Early Onset Alzheimer's - Encourage, Inspire, and Inform

Inspired By a Coincidence

2012-01-18T11:14:00.000-08:00

Today I was cleaning out a file that I had forgotten existed. It was simply marked “Alzheimer’s” which covers a lot of territory. This particular file contained an assortment of national and chapter newsletters, various newspaper clippings, brochures, notes and letters from Mid-Missouri staff, and miscellaneous odds, ends, and memorabilia. The file had been untouched for the past five years.

It was a letter I had written to our family physician that transported me back in time. I had no recollection of writing the letter and read it with fresh eyes.

The letter began with “I have made arrangement with…Guest Home to provide daycare for Jim two days a week beginning in February. For some time I have not wanted to leave Jim by himself during the day while I work. His mother has been keeping an eye on him and preparing his meals for him. Jim no longer has a driver’s license and cannot dial a telephone. It is really hard to know what he will be able to do from day to day as his dementia progresses.”

To this point, I’m wondering why I wrote his doctor this letter.

“If I can get him to cooperate, daycare will be good for him. He doesn’t really do anything during the day besides watch TV. I think the stimulation of being around other people would be good for Jim. I also worry about his mom being so tied down with him and not being able to do a lot of things she likes to do. I also need a backup plan in case his mom would be unable to watch him. I am hoping that daycare will provide us with enough relief that we can keep Jim at home as long as possible.”

As I read on, the purpose of the letter came to light.

“I think if you suggest that he go somewhere during the day to get out of the house and be around other people, he will do it. I don’t know if I will be able to convince him that it would be for his own benefit, but I think he will listen to you.”

With the doctor’s help, we convinced Jim to give eldercare a try. The place I chose was on my way to work and I could just drop him off. After the first day, he didn’t want to go back. I remember pleading with him to go and he balked, but eventually I loaded him into the van. I felt much like a parent dropping off a child at the babysitters. Jim took his guitar with him and spent the day in an out-of-the-way spot playing the same song over and over. He didn’t socialize with anyone or participate in any of the bingo or card games the elderly residents played.

After a few short weeks at daycare, the Guest Home called me and told me they were terminating his care. It seems he picked up his guitar and walked out the door. He had made it to the highway before a staff member missed him and went after him. They just couldn’t be responsible for someone who wandered off.

I had already decided that the daycare arrangement wasn’t working for Jim or me. He was stubbornly insisting he didn’t want to go “today” every time I tried to take him. It just wasn’t working out the way I had envisioned.

The next step was in-home care. That presented a new set of problems due to a high turnover with the service and the last minute calls with excuses why the designated caregiver couldn’t come that particular day. Some days no one showed up and the service didn’t know why. It seemed that they never had a substitute available.

A little over a year after I wrote the letter, I placed Jim in long-term care. We had run out of options, and he needed twenty-four hour supervision.

The letter brought back a rush of emotions. For a few short minutes, I relived the depression, frustration, and responsibility of being a primary caregiver searching for solutions to an ever-shifting kaleidoscope of problems.

I put the letter away with the other memories in the file folder that I couldn’t toss into the trash. As I replaced the letter I noticed the date at the top: January 18, 1999. The letter was written thirteen years ago today. It seems more like another lifetime, another me.

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Focus on the Positive: Notice the Red Cars

2012-01-07T08:23:00.000-08:00

I started the New Year out right by attending a Jennifer Yazell presentation. Jennifer, CEO of Golden Egg Communication, is a dynamic speaker capable of motivating a die-hard pessimist.

Jennifer teaches that you get more of whatever you focus on. It is logical that if you focus on the positive, you become more motivated.

One of the tools she used to drive home the point was a film clip called “Red Cars.” As the driver of a red Chevy Malibu, I understood this video perfectly. When I bought a red car, I began to notice other red cars. Every time I drove into a Walmart parking lot, it seemed like everyone was driving a red car. Sometimes I had to push my horn-honking button to figure out which red car was mine.

One day I walked out of Walmart carrying a bag of groceries and pushed the unlock button as I approached my red car. I opened the door and started to put my groceries in the back seat, but a vacuum sweeper was in my way. I immediately realized that either the vacuum fairy had visited my vehicle, or I was trying to put my groceries in the wrong red Malibu. Apparently, I was a little too focused on red cars in general and not my car in particular.

Of course, red cars aren’t the most important focus in my life. I firmly believe focusing on the positive gave me inner peace that became my lifeline when Jim developed dementia.

Some chunks of time are so challenging that even Polly Anna would pop anti-depressants. If your loved one has Alzheimer’s, you may wake up each morning with the sense that something is out of balance and dread facing the day. Alzheimer’s is most assuredly a depressing and sad disease over which you have no control. Either your doctor tells you the prognosis or a few Google searches later, you learn the eventual outcome.

Alzheimer’s takes years or even decades to run its course. It’s hard to retain optimism, but if you become overwhelmed by the negative implications of an Alzheimer’s prognosis, the disease has claimed two victims.

When the doctor diagnosed Jim with dementia of the Alzheimer’s type, it was the most crushing moment in our lives. Once we got past the initial shock, we survived on denial for a while. Eventually, we recognized that the disease was progressively taking over our lives.

As we adjusted to our new reality, the darkness lifted. We began to focus on activities we could still enjoy together and not on the disease. Because of that change in focus, we made the most of the reprieve given to us during the early stages.

I won’t try to convince you that suddenly everything was okay. Dementia is a series of losses and the grieving process is ongoing. The key to survival is to focus on the positive, and find ways to take control of your attitude.

The diagnosis was a turning point in our lives, but it wasn’t all negative. Before Jim was diagnosed, my life consisted of getting up in the mornings, going to work, coming home at night preparing dinner, watching TV or reading a book, going to bed and start all over the next day.

After the diagnosis, I contacted the Alzheimer’s Association. Before I knew it, I joined a support group, coordinated the Memory Walk in our town, became a local and national Alzheimer’s advocate, and gave presentations to civic groups.

My circle of friends grew exponentially. Instead of feeling sorry for myself, volunteering became my “red car.” By focusing on others, I received the gifts of friendship and purpose.

I’m not saying I wake up each day and jump out of bed with enthusiasm. Sometimes I can be a grump until I’ve had my morning coffee. I do normally wake up with a mental list of events, activities, or potential accomplishments for the day. In fact, often my To-Do list cannot be completed in one day, one week, or one month. That doesn’t discourage me. After all, it is a New Year and I predict that every item I focus on will be finished before the end of the year.

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When a Holiday Heart Isn’t a Good Thing

2011-12-24T03:12:00.000-08:00

During the holidays, news abounds about those generous people who have holiday hearts and give away donations to complete strangers. Secret Santas pop up all over the place, and we hear heartwarming stories about them giving away $100 bills.

I witnessed a Secret Santa type of moment at Cracker Barrel a few weeks ago. An elderly gentleman tried to pay for his dinner and the waitress said, “You don’t owe anything.”

“What?” he said. “Where’s my bill?”

“It’s already paid,” she said loudly as she leaned closer so he could hear. “The couple sitting at that table,” she pointed to show him, “paid for your meal. They are already gone.”

The elderly man seemed a little puzzled, but he sat and leisurely drank another cup of coffee. I thought he might have taken the extra time to assure himself that he really didn’t owe anything. The couple that paid for his meals had holiday hearts—the good kind.

I would like to alert caregivers to a different type of holiday heart that physicians nationwide are talking about on television. It seems that a combination of overeating, the stress of the holidays, and partying can create havoc with your heart.

People who don’t normally drink tend to overindulge during the holidays. My son refers to New Year’s Eve as “amateur night” in reference to people who don’t know their alcohol consumption limit.

After the chaos of planning and pulling off a holiday party, it may seem like the perfect way to relax and enjoy. For some, the consequences can be frightening and life threatening.

The symptoms of holiday heart syndrome:

You feel lightheaded and dizzy.
You are short of breath.
Your heart beats faster than normal and you have an irregular heartbeat.

If you experience these symptoms, cardiac specialists recommend that you stop drinking alcohol and drink cold water to rehydrate yourself. Coughing also helps to reset the heart’s rhythm.

If these symptoms don’t go away within ten to fifteen minutes, it is time to call 911. You may think this seems overdramatic for a little drinking and overeating, but the holidays are primetime for a heart attack. Five percent more people die from heart-related deaths during the holidays especially on Christmas Day, the day after Christmas, and New Year’s Day.

Drinking is not the only problem. Overeating causes its own set of heart threatening risk factors for those who may have underlying heart disease. An increase in fat and sodium can put a strain on the heart that can lead to a heart attack.

Moderation in food and drink will keep your holidays merrier, not to mention healthier. It will also make that New Year’s resolution to lose weight more attainable if you don’t gain that extra five or ten pounds during the holiday season.

Here’s a non-alcoholic toast that your holiday heart is healthy and filled with joy and generosity.

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Why Is the Sky Blue?

2011-12-19T12:36:00.000-08:00

My mom and I sat at the kitchen table drinking coffee, and I had just finished relating the strangest of many dreams I had the night before. My granddaughter sat in a chair between us reading a book.

“I wonder why I have such strange dreams,” I said.

“I can tell you, Grandma Linda,” my granddaughter said. She flipped the pages of the Why? book she was reading and proceeded to answer my question. “Scientists think that you dream as your brain tries to make sense of all the things you’ve done and felt during the day.”

“Sounds right to me,” I said. “I do and feel a lot each day and half the time I can’t make sense of it.”

The Why? book has been around my house for years and has passed down from grandchild to grandchild. It answers a lot of the “why” questions that kids ask and adults can’t answer.

The book even answers the question my oldest grandson asked me many years ago. I picked him up from the babysitters and from the backseat he asked, “Grandma Linda, why is the sky blue?” I was stumped for an answer.

That was before I bought the Why? book. It has Bathtime Questions, Supermarket Questions, Nighttime Questions, Kitchen Questions, Farm Animal Questions, and Outdoor Questions, including “Why is the sky blue?”

The book doesn’t have any Health Questions, and doesn’t answer why a person develops Alzheimer’s or a related dementia. I guess you can’t expect a children’s book to answer questions that dedicated researchers cannot answer.

Sure, in some cases, early onset Alzheimer’s can be attributed to a genetic cause. Later onset Alzheimer’s is usually blamed on a risk factor such as age.

I guess the biggest “why” question that plagues me is why did Jim develop dementia at forty-nine? Why was his life cut short by a disease so rare that I had never heard of it until the neurologist read the autopsy report? The answers to these questions stump me more that my grandson’s question about the color of the sky.

Our lives were on track headed in the right direction until dementia derailed the train. We had made it through the hard times and were looking forward to traveling, spending time with family, spoiling our grandkids, and sitting on the front porch drinking coffee.

The house was filled with noise and laughter once again when our family was here for the annual Christmas get-together. I was reminiscing about how rarely this happens now, but we used to have a full house on a regular basis. I never knew when Jim would come home and say he was having a jam session, and oh-by-the-way they’ll all be eating dinner with us. Times were certainly different then.

Life changes. People pass though my life, and I lose touch with beloved family and friends. Years can pass without seeing people I once saw on a daily basis. New friends enter my life to renew hope and soothe my spirit. I am fortunate, indeed, to be a member of a loving and supportive family.

Through it all, I sometimes wonder why life turns out the way it does, and how certain events fit into the master plan. When I look at my sons and grandchildren, I know that flight to Hawaii exactly forty-two years ago to marry Jim was part of my life's master plan.

The “why” questions of life may have more than one correct answer. The sky may be blue because clear light is made up of all the colors of the rainbow and the blue light waves that bounce back are the ones you see. Or, the answer might be the one I gave my grandson to the question he asked just as I drove past Hopewell Church. “I’m sure there’s a scientific reason, but I don’t remember what it is. Maybe it is blue because God made it that way.”

Some of the “why” questions of life cannot be found in any book and can only be answered through divine inspiration.

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Tis the Season to be Joyful—or Stressed

2011-12-13T10:54:00.000-08:00

Holiday Lights in Branson

We all hold tightly to traditions that lift our spirits. Some holidays are so special they create golden glows in our memories. It may be challenging to remain joyful about the holidays if you are a primary caregiver for a loved one with dementia.

Much of the season may be spent running interference between your loved one and relatives, friends, or neighbors that just don’t get it. You may need to make adjustments to protect your loved one and your sanity. With careful planning, even these difficult times may seem like small miracles on your own street.

After spending ten holiday seasons as a primary caregiver, I had time to learn how to survive the holidays. I would like to share a few tips I learned—mostly from trial and error.

Keep it Simple. Less is better in all things holiday. Just because you have a thousand points of light, don’t string them everywhere. Avoid going overboard with decorations, food, and celebrations.
Don’t Shop Till You Drop. Slash your gift list to immediate family. Consider the advantages of shopping online or purchasing gift cards. If you enjoy shopping, find someone to stay with your loved one and plan a weekend away. Shop. Relax. Shop. Relax. Repeat the relaxing as often as necessary.
Strive for Peace and Joy. Go back to the basics and the reason for the season. Read inspiring holiday stories. You can enjoy a tin of popcorn and watch a movie on TV. If your loved one can’t make it to the grandchildren’s holiday program, have mom or dad record it and watch it at home.
Jingle Bells. Enjoy traditional Christmas music with your loved one. You may love the Trans-Siberian Orchestra, but your loved one will more likely enjoy “White Christmas” or even “Frosty the Snowman.” Music can trigger happy memories.
Keep Traditions You Love. Only you know which traditions you keep because you enjoy them. If you spend hours baking or making candy just because everyone expects you to do it—stop!
Allow More Time. When you are a caregiver, it just takes more time to get things done. You will want to avoid getting frazzled and cranky because you ran out of time. Plan ahead and let your loved one with dementia help you. How about letting her slather icing on sugar cookies? Does it really matter if they are perfect? Maybe he would like to stick bows or nametags on packages for the grandkids.
Give the Gift of Love. If you are so stressed out trying to make the holidays perfect for everyone, you forget the most important thing. Slow down, take a deep breath, laugh and find happiness in the moment. Remember the greatest gift of all is love.

In the early stages, I would drive Jim around town to look at the holiday lights. In the late stages, Jim would spend hours looking at the little fiber optic tree I put in his room at the nursing home. Feeding him on Christmas day is, believe it or not, a memory I cherish. I remember holding his hand while we watched the little tree whirl round and round and listened to the same Christmas songs we sang in elementary school. Even the most poignant times have turn into precious memories.

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Hard to Swallow

2011-12-05T11:58:00.000-08:00

Don’t you just hate it when you go to the doctor and he tells your problem is because you are getting old? Well, he most likely will use a euphemism like, “As we get older…” and then fill in the blank with whatever has gone wrong now.

The health issue that took me to the doctor a few weeks ago—just at the end of the year when I had not used one penny of my high deductible insurance—was a problem with swallowing. For quite some time, I had noticed that my food felt like it was caught in my esophagus, but I was doing a great job of convincing myself that it was only a minor problem until a bite of bagel hurt so much going down that it brought tears to my eyes.

I knew this was not going to be an easy or cheap fix. We went down this road with Jim when he developed problems swallowing because of his dementia. It was something we struggled with throughout his disease. In the later stages, Jim was put on mechanically softened foods and then eventually on pureed food. I think by that time, it distressed me more than it did him. I hated that he couldn’t eat the things that he had always loved.

So, I knew a little bit about swallowing problems, not my own, but Jim’s. After contemplating the situation, I just felt like this wasn’t a problem that was going away on its own.

I had barely walked into the doctor’s office when they told me step on the scales. After seeing those numbers, it reminded me that I need a new battery for my scales so I can keep a closer eye on the pounds I’m packing on. After my blood pressure check, the doctor listened to lungs and my latest complaint.

He explained how “when we get older” the esophagus narrows, which makes it hard to swallow food and move it to the stomach where it belongs. It’s a fairly easy fix. After explaining that they just stretched the esophagus, my family doctor ordered an endoscopy.

Between my other commitments and vacation, the doctor that was to perform the scope and I couldn’t easily find a date that worked for both of us. Three weeks passed before the day our schedules meshed. The endoscopy didn’t require any prep, just lay off the food and drink after midnight. I would sleep through the whole procedure or at least be so loopy that I just wouldn’t care.

The procedure took about seven minutes—everything else took about two hours. I could hear them talking while they worked and I heard the word “ulcers,” and something about biopsies, another scope, and then things got a little fuzzy.

Later, I learned that I had ulcers in my esophagus, and a hiatal hernia. I still haven’t had my follow-up appointment with my family doctor, but I’m trying to eat things that go down easy. In the meantime, I’m trying to follow a recommended diet that says you should eat enough food to get nutrition, but not a lot at one time. It has lists of what to eat (oatmeal, applesauce, yogurt, fish, chicken, etc. along with low-fat everything) and what to avoid (cabbage, broccoli, corn, tomatoes and tomato products—and worse yet chocolate and caffeine).

I’m working on changing some of my eating habits, but I can’t bring myself to cancel my morning coffee and pray the doctor doesn’t tell me to quit chocolate. I’ve decided not to panic until I hear the details tomorrow about the doctor recommended diet. Hopefully, it won’t be as strict as the one I found on the Internet and won’t last forever.

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Nontraditional Holidays

2011-11-24T08:12:00.000-08:00

The best holidays are a marriage of tradition and new tradition. A traditional holiday can cause unnecessary grief and stress when a loved one has dementia. The family get-together that used to the highlight of the year can become the most depressing day of the year.

Our holidays were always split between Jim’s family and mine. Thanksgiving was the time my family gathered at the old home place for turkey, dressing, gravy, pumpkin pie, and all the side dishes and trimmings. After dinner, the kids (big and small) would go outside to mill around and maybe play a game of touch football. One year, Jim videotaped the game. Ever the showoff with his video skills, he brought it inside and played it on my mom and dad’s TV. We were all laughing at the game until my dad yelled, “Oh, my god! That’s my new tree,” when a couple of kids scuffled over the ball taking the spindly sapling to the ground.

The old home place groaned when filled with eight of us “kids” and our families, Mom and Dad, and the invitees that didn’t have a family dinner of their own. We felt sorry for those folks and thought that with the size of our family, it would never happen to us. Even the most distant cousin was a welcome guest at our traditional dinner

The first time I went to the dinner alone was when the reality set in that Thanksgiving dinner would never be the same. Jim was in the nursing home, and I knew the more than hour drive and crowd of rowdy family would no longer be a pleasant experience for him. It was a long lonely drive but once I arrived, the family time was worth the change in tradition

Eventually, my family decided to rotate homes for the annual get-together and changed the time to September. We were on our own for Thanksgiving for the first time in decades. After my mother-in-law passed, my other home for the holidays was gone. My kids, in the meantime, had both developed their own traditions.

The past few years, I’ve enjoyed a traditional thanksgiving with my friend who was on his own after his mom passed away. The holiday has been different, but with the Macy’s Thanksgiving Day parade, some of it seemed the same. It was still Turkey Day—for days on end. More like Turkey Week. How much turkey can two people eat?

Isn’t it time for a new tradition? You bet. This year we are grilling steak. Sometimes, a nontraditional holiday can take on a life of its own and possibly become a new tradition. We can enjoy the meal without the aftermath of enough food to feed an army. Cleanup will be easy and we will have more time to be thankful for all the blessings life has brought our way.

A little non-tradition may be the pumpkin pie spice of life you need to bring joy back into your holidays. Maybe a little less reflection on what used to be and more hopeful thought to new possibilities. I hope you find peace and happiness during the holidays regardless of how you celebrate.

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Time Management

2011-11-11T06:26:00.000-08:00

I’ve attended a couple of great seminars lately on time management. Both presenters touted organization as a key to save search time and increase leisure time. Well, organization does help, I suppose. It really irks me to have to figure out where I put something so that it will be “easy to find” when I need it.

One of Jim’s favorite sayings was “Right here, but I can’t find it.” Sometimes he referred to not being able to find the correct words to say what he meant, or he could be looking for an object. I helped him look for a lot of items even when he wasn’t able to tell me exactly what he wanted to find.

In my job, I have a spacious office, but I have to handle a vast amount of paper. My two file cabinets are jam-packed and with several different projects going at the same time, I have stacks of paper. Most of the time, if I’m looking for a particular piece of paper, I know which stack to search. I’m starting to think that when I go home at night, my papers play musical stacks. When searching for a particularly slippery piece of paper, I might feel like it’s right here, but I can’t find it.

Another time management tool I learned lately was to organize a To-Do list by priority. If something has to be done that day, you place an “A” next to it. A task that doesn’t have an urgent deadline, but must be done soon, is put on the “B” list. Anything else is put on a different list that you check from time to time when you catch up on your “A” and “B” lists, or if you are just totally freaked, and need something less stressful to do.

I’ve always been a believer in a To-Do list, especially if I can find time to list the things I need to do. Lately, I’ve graduated to a To-Do book for my personal life. I’m not joking about that either. I have a small, but thick, notebook that with the words “To-Do” marked boldly on the outside. Now, if I’d only remember to look at it every day. Should I put that reminder on the To-Do list?

One of the suggestions I came away with from the last seminar is to take a few minutes of quiet time at the end of the day and list the “A” and “B” tasks for the next day. Some days this works well and I leave work confident that I’m in control of my own work destiny. Other times, total chaos rules and, just like yesterday, I’m frantically pushing against a deadline—everything goes wrong, and at the end of the day I’m trying to finish up just one or two more important “A” items that I didn’t have time to list.

With today a holiday and Monday my day off, my Tuesday “A” list consists of two folders and three pieces of paper in the middle of my desk weighted down with a stapler. Actually, that might be my “A+” list since I have to be prepared for the monthly board meeting by nine o’clock.

With my involvement in three organizations, writing, publishing, and a day job, my goal is to squeeze in some recreational time and, more importantly, family time. While my head is spinning with all that I have to do, I am shocked that my grandson is graduating from high school and filling out scholarship applications. Where has the time gone? It seems like only yesterday that his Grandpa Jim sang cowboy songs to him while I held him on my lap.

I realize now that I don’t manage time; time manages me.

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A Vietnam Veterans Tribute

2011-10-31T19:56:00.000-07:00

The Sedalia Democrat hosted a Tribute in honor of the 50^th Anniversary of the Vietnam War. Leading up to the event, Latisha Koetting tracked down family member to tell the stories of the men whose names are inscribed on the Vietnam Memorial on the courthouse lawn. I’ve been saving the newspaper stories because the stories of these young men tug at my heart.

During the course of the event, three local veterans told their stories. James “Smitty” Smith told about adopting a daughter while serving in Vietnam. He spoke of his struggles to go though different embassies and how surprised he was that he had to take the baby out of the orphanage. He found a place for them to live until eventually he sent the baby home with another soldier. His daughter Teresa, who works for homeland security, was present and spoke about how she owed her existence to the Vietnam War and how grateful she was to her mom and dad.

Jim Clark told a humorous account of his time in Vietnam although he had serious injuries. He said that he liked to tell tall tales sometimes so he told a friend one time about the day he was injured. He was in a field without cover and he spoke of trying to hide behind a watermelon. His story was that he took out his knife and cut the buttons off his shirt. “Why did you do that,” he said his friend asked. Clark’s answer, “So I could get lower to the ground.”

The final speaker, Gregg Davis, spoke of living through the loss of his legs and other injuries. He told of how his men ripped up their shirts to make tourniquets for him and another wounded Marine. Gregg was vocal about the damage caused by Agent Orange and the government’s lack of response. He spoke of the name-calling and how the Vietnam Veteran’s were treated after they came home.

It was Gregg’s story that made me think of Jim. I’m sure Jim would have agreed with Gregg’s views a hundred percent. I can’t remember who said it, but one of the speakers said a veteran told him, “I died in Vietnam; I just didn’t know it.” I believe that is true for a lot of the Veterans. I know the war was a big transition for Jim, and he was a different person when he came back.

Jim’s picture was included in a tribute video along with more than sixty Vietnam Veterans who have died since the war. Latisha Koetting made an observation that it seems like the Vietnam Veterans are dying at a younger age that previous veterans. This agrees with my own thinking. I’m afraid we aren’t going to see many old Vietnam Veterans. I can’t help but wonder what part Agent Orange had to do with Jim’s physical problems, and I know that PSTD had everything to do with his depression and emotional problems. It only leaves the question as to whether the war had anything to do with the rare form of early-onset dementia that Jim had.

These thoughts and the tribute must have been the reason I had a dream about Jim last night. I dreamed Jim wore a brown sweater that was much too big for him. He pulled the sweater across his chest one side over the other. “I don’t feel like me in here,” he said, with his hands over his heart. I straightened the sweater and buttoned it for him. I put my arms around him and held him close to me. “Now do you feel like yourself?” I asked. He smiled and said, “Yes, I do.”

When I awakened from the dream, I felt like I had been holding Jim while he slipped into the world of dementia. The feeling of loss was as strong as ever, but the unbearable thought was his loss of self.

The tribute was sad, but it was also long overdue. Jim would have appreciated the tribute, but he would have left before “Taps.” The sad tune always made him think of funeral duty during the year after he returned from his tour of duty in Vietnam. The war changed everything for Jim and for our family. I think he died there, but just didn’t know it.

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Alzheimer's puts stresses on caregivers, but these strategies can help | alzheimer, parent, puts - Sedalia Democrat

2011-10-27T18:53:00.000-07:00

Alzheimer's puts stresses on caregivers, but these strategies can help | alzheimer, parent, puts - Sedalia Democrat

Life Through the Rearview Mirror

2011-10-20T19:05:00.000-07:00

During my lifetime, I’ve gone on many road trips for various reasons. Of course, my favorite trips were those taken during those golden weeks of the year known as vacation. On those trips, life looked great through the windshield.

.I can’t remember many trips that I didn’t travel with someone else. Traveling with others makes life’s little adventures more fun. It also increases the need for flexibility and bargaining. “I’ll go to the amusement park with you today, if we stop at a museum tomorrow.”

When we are on a fun trip, we wake up each morning filled with anticipation. On a long trip, each day brings us closer to our destination—the ocean, the mountains, an exciting city, or maybe the breathtaking beauty of a national park.

If we are lucky, the sky is blue, the sun shines, birds sing and every event, place, and day exceeds our expectations. Other journey don’t measure up to our expectations, and we feel disappointed. Sometimes it’s just something way beyond our control—the weather, illness, car trouble, an emergency at home, or various combinations of disasters. We may even regret wasting our time and vow we will not return to that particular destination.

Some journeys we plan, others just happen. Some we move ahead with confidence and other times, we look back and wonder why we are even on this trip.

Throughout the Alzheimer’s journey, we often find ourselves taking our eyes off the road ahead and looking at life through the rearview mirror. This holds true for both the caregiver and the person with the disease.

The person with the disease becomes more dependent on the familiarity of the road already traveled. As the ability to process new information becomes more difficult, the more important the rearview mirror becomes.

The caregiver may worry about the dangers of the journey ahead and believe that if they look into the rearview mirror they will feel safer. They have managed to navigate the road so far, and the road ahead may have hairpin curves, tedious detours, drop-offs without guardrails, and maybe even a bridge out.

When I travel, I know that the rearview mirror has it place. I like to check the rearview mirror to see how the traffic behind me is flowing. Is that car going to pass me on a curve? Okay, I need to change lanes and although I don’t see anyone now, I know a car was behind me a few minutes ago and they haven’t exited or passed—yeah, there they are in my blind spot. Oops, is that highway patrol officer flashing his lights at me? When you pass another vehicle, it is more certain you have cleared the vehicle when you see it in your rearview mirror rather than in side mirrors that plainly say, “Objects are closer than they appear.”

So what can it hurt to look at where you’ve been more than where you are going? You never want to become so distracted looking at what is behind you that you miss important signs of what may lay ahead.

Not everyone wants to be a trailblazer, and you don’t have to be when you are traveling the Alzheimer’s Journey. Others have been down the road you are traveling and they are willing to share their knowledge and help you chart your journey. Any journey is easier with a map and an itinerary. If you know which route you are going to take and what you will be doing along the way, the trip runs smoother and is much less stressful.

http://earlyonset.blogspot.com

The Colors of Autumn

2011-10-06T11:03:00.000-07:00

On a drive last weekend, I had my first glimpse of autumn colors. No other time of year is as beautiful as autumn with its hues of blazing orange, yellow, red, purple, and rust. Between the colors and the brisk morning air, I was inspired to begin my autumn decorating. Not satisfied with pulling out my Halloween decorations, I was compelled to go ahead and decorate for that seemingly forgotten holiday—Thanksgiving.

The two holidays blend well together with their autumn tones. I learned a long time ago that when you turn jack o’lanterns to the wall, they look just like Thanksgiving pumpkins. I guess my pilgrims can be Halloween costumes, but I don’t think many kids dress as pilgrims. It just seems to me that the two holidays are related—not as closely as brother and sister—more like first cousins.

With the holidays ahead and the temptation to go overboard on decorations, it may be time to consider whether decorations are in the best interests of a person with Alzheimer’s. If your loved one is in the early stages of the disease, she may be more enthusiastic about holiday decorating than she ever was. He may enjoy handing out candy to trick-or-treaters.

As the disease progresses, decorations and all the hubbub of the holidays may become more of an ordeal than a pleasure. One of the best ways to make life more pleasant for a person with dementia is to avoid change. Holiday decorations can change the look of a familiar place—home.

When Jim was in the later stages of the disease he became agitated and distressed when I started putting away pictures and other decorations that normally sat on end tables and on the bookshelf. One year, he followed along behind me removing the pictures from the storage box and putting them back on the shelf.

It taught me a lesson. Just because it was what I wanted to do did not mean that it was the best decision for that particular time. When he was living at home, it was better to simplify the holidays and rethink traditions that no longer worked with our situation.

And, guess what? I never felt the least bit guilty about it and it never ruined the holidays. Throughout life, traditions have to be adjusted to each particular era. If a tradition makes someone unhappy, it is time to create new ones.

There’s something about autumn harvest that says it is time to benefit from the hard work that came before. It is time to store up for the frigid weather ahead when winter brings the beauty of the snow and glistening ice tinged with the dangers of wind chills and treacherous roads. Aw, time marches on, and we always have the unique beauty, and excitement, of the seasons ahead.

Copyright © October 2011 L. S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s Journey – Alzheimer’s Resource

2011-09-27T19:46:00.000-07:00

On Alzheimer’s Action Day, “Alzheimer’s Journey” was launched as a new section to my www.lsfisher.com website. Journey is written for caregivers, those with dementia, or for others who want basic information about Alzheimer’s. Knowledge is key to coping with Alzheimer’s.

When my husband, Jim, was diagnosed with dementia, we were at the bottom of the Alzheimer’s learning curve. Neither of us had a close relative with Alzheimer’s and really knew nothing about the disease.

I thought Alzheimer’s was forgetfulness that developed in old age, and couldn’t really understand why my forty-nine-year-old husband was being told he had this condition. Still, the rudest awakening for us was to learn that although medications were available, they did not slow the progression of the disease. Yes, medication could help with symptoms, but the inevitable decline could not be avoided.

I began to learn everything I could about Alzheimer’s by exploring every resource I could find. I read every book I could find on Alzheimer’s, watched documentaries, visited countless websites, attended caregiver training (for professionals and family caregivers), forums, conferences, support groups, workshops, educational symposiums, and various other learning environments.

Every scrap of information helped me cope with a disease that wreaked havoc on life as I knew it. Once Jim and I began the Alzheimer’s Journey nothing was the same.

An Alzheimer’s diagnosis is like any other crushing blow in life. Once I worked through the stages of grieving for what should-have could-have been, I decided that I just didn’t have the personality to give up and say, “Okay, Grim Reaper, you win.” My time was much better spent with living than with dying. After all, we are captive to the human body we inhabit and perfect health is the exception, not the rule.

My plan of action: (1) Learn as much as I could about Alzheimers, (2) Test for any treatable conditions that might cause dementia symptoms, (3) Treat any other health problems to maintain quality of life, (4) Accept the personal responsibility to ensure that Jim received the best care whether he was at home or in long-term care, and (5) Love him for the person he was at that particular time without mourning the loss of the man he had been or worrying too much about the man he would become.

It helps to take one day at a time, or as one caregiver said, “Sometimes I have to take one minute at a time.” Talking to other caregivers kept me from feeling all alone. I learned from their mistakes, and they learned from mine. By supporting each other, we became stronger spiritually, and made much better caregivers. Sometimes, it’s hard to attend a support group meeting, and the group may not have a meeting scheduled when a crisis occurs. Between group meetings, I found it easier to go online and post my questions, frustrations, and fears to a forum.

Alzheimer’s Journey will have a forum where people who have been touched by Alzheimer’s can communicate with each other. It will be a virtual support group. You will be able to view the forum without joining. If you want to join in the conversation or want input on a problem, create a user name and register.

Alzheimer’s Journey will be an Alzheimer’s resource with articles, news updates, and a forum. Everything will be in an easy to find format and you won’t have annoying advertisements blocking your view of the screen. I also won’t take you in endless loops trying to build “clicks” to increase advertising revenue. This site is for you, not for profit.

Copyright © September 2011 L. S. Fisher

http://earlyonset.blogspot.com

www.lsfisher.com

Alzheimer’s Action Day – September 21

2011-09-19T20:06:00.000-07:00

September 21 was known as World Alzheimer’s Day for many years. This year, September was designated World Alzheimer’s Month and the 21^st took on a new role—Alzheimer’s Action Day.

Alzheimer’s disease is a world problem with 35.6 million affected. It is a national crisis affecting 5.4 million in the U.S. It is an issue in every state—Missouri has 110,000 residents living with Alzheimer’s. Once Alzheimer’s deals us a devastating blow on a personal level, we learn the harsh reality behind the statistics. When Alzheimer’s claims a close friend, a cherished spouse, a beloved parent or grandparent, or sibling, we find ourselves in a battle with a formidable enemy.

In this country, more than 15 million caregivers provide comfort for loved ones who have Alzheimer’s disease. Few family caregivers have professional training. Most learn by doing the job with a loving heart, compassion, and forbearance.

A primary caregiver doesn’t sacrifice a few hours here and there. Caregiving is a day in, day out job. The duties go on, and on, and on. Just when the caregiver thinks he or she has a handle on the situation, something will change. Or the solution for a problem yesterday, might work again today, and tomorrow it may make things worse instead of better.

No one ever said life was easy, but most of you don’t expect life to be a constant uphill battle without any rest. Life shouldn’t be a tug of war where you are in danger of being dragged into the mud pit no matter how deep you dig in our heels or how hard you try.

Caregiving can seem to be a thankless job. Sometimes the people you expect to support you, instead let you down. They may wish you good luck—but want to be left out of it.

Probably, one of the most difficult aspects of being a caregiver is to realize that not everyone is cut out to be one. Caregiving is only for the strong at heart, and it sure isn’t for sissies. You can’t shame or “guilt” someone into being a caregiver. Anyone who provides care grudgingly will do a lousy job of it.

It is best to let those who can’t go the caregiver route help in other ways. So maybe your brother can’t help mom with her bath, but what if he will mow the grass instead? Maybe your sister can’t tolerate your dad’s repetitive questions, but if she loves to cook, maybe she can provide dinner a few nights a week. Let people help at the levels they can. Accept any offers of help that come your way! Never, ever turn anyone down and have a list ready for those who really want to help, but don’t know what you need. It won’t take long to separate the sincere offers from vague platitudes.

Why do caregivers hang in there day after day? Is it out of a sense of duty? Sometimes. Is it because caregivers love being martyrs? Not often. The most common reason is love for the person with dementia—and to keep him or her as productive, happy, and physically healthy for as long as possible.

Whether you are a caregiver, or play a supporting role, have you thought about what you will do Wednesday to raise awareness? At the Alzheimer’s Action Summit last spring, we brainstormed some ideas to create awareness, so I’ve had some time to think about it.

At the beginning of September, I changed my Facebook photo to the "End Alz" icon. I will be on a local radio station (KSIS) at 9:30 Wednesday morning to talk about the human and economic cost of Alzheimer’s. In the afternoon I’ll be at Sedalia Book and Toy for a signing of my four Alzheimer’s Books. In honor of “Go Purple Day,” I’ll be giving a discount for anyone wearing purple. All my royalties will be donated to the Alzheimer’s Association Mid-Missouri Chapter.

On September 21, I hope you wear purple to show you are in the battle against Alzheimer’s. The bigger the army, the better our chances are of someday living in a world without Alzheimer’s.

http://earlyonset.blogspot.com

Voices, Pain, and Hope

2011-09-12T11:32:00.000-07:00

“Hey, Sheila, just touching base,” my call had gone to voice mail, as I pulled out onto the highway early Saturday morning on my way to the Walk to End Alzheimer’s. “It’s a beautiful day and I don’t think it is going to r-a-i-n.” I spelled the word rather than say it aloud. All week the forecast had been for a beautiful day, and two days ago, it changed to a 40 percent chance of rain.

At the fairgrounds, Bobby and Kim had arrived with tables and chairs. Since this was my thirteenth walk and their first, I showed them where we needed tables. A year’s worth of planning has gone into making this day special for the people who know the pain this disease leaves in its wake.

Banners flew high, balloons were delivered, and my books lay on the table ready to sign. As I signed books, I heard their stories.

“I used to walk for Jimmy,” my husband’s cousin Shirley told me. “Now, I walk for my mom too. She doesn’t know me anymore.” I heard sorrow in her voice and saw pain in her eyes.

“I just lost my husband,” an elderly lady said as I signed her book. “He had Alzheimer’s.” Her family was one of our new teams.

“I’m so sorry,” I said. Our eyes met and we connected—person to person, woman to woman, widow to widow. We shared through silent communication the knowledge of watching a loved one change, and oh, so slowly, fade away.

“You are Lynne’s sister,” I said as I looked up and saw a woman holding a small dog in her arms. Lynne, my friend, had early-onset Alzheimer’s. “I wrote about her on my blog, but it will be in next year’s book.”

The stories lay on my heart. I heard about grandparents, sisters, brothers, uncles, spouses, friends, co-workers… Voices shared special memories and snippets of lives lost to a disease whose only survivors are family members like those standing in front of me.

Oddly, enough, the day was festive. The sorrow pushed aside as we do what we can—support the Alzheimer’s Association and wear our purple to create awareness that Alzheimer’s is a formidable enemy and we are going into battle. The music was upbeat and the teams lined up to begin the walk.

Sheila and I carried the banner through the arbor and as we headed out onto the fairgrounds, her son Phillip took over for her, and Phillip and I led everyone onto the route. We passed signs with Alzheimer’s information: Every 69 seconds a person develops Alzheimer’s. How many minutes does this walk take?

As we looped past the midway area of the fairgrounds, Phillip said, “People are just now coming out.” He was right. This had to be a record-breaking crowd.

A few people passed us up. My nieces Taylor and Alex decided they wanted to run and moved ahead of us. Everyone was greeted with applause and “Chariots of Fire” music at the finish line.

While we were gone, numbers were tallied. Sheila announced that we had more than 350 walkers and raised more than $23,000, surpassing all our goals.

We gathered in a grassy area to release the balloons. Sheila brought began a countdown. Purple balloons sailed toward heaven with names, messages, and prayers written on them. Through my own tear-blurred eyes, I noticed a young couple holding each other tight as they both cried.

Through the pain, I heard whispers of hope. We want this cruel disease to end. This vicious cycle of disease, loss, and certain death needs to be stopped. We are families and friends of 5.4 million Davids fighting a formidable giant.

The walk ended, goodbye hugs shared, the cleanup finished, and we went our separate ways. On the drive home, I felt like pinching myself. Was the day really over and as successful as I thought, or was I just dreaming again?

My elation with the success of the day, so perfect, was replaced with other more sobering thoughts. I couldn’t call my friend Ted to tell him the great news. His numbers are still programmed into my cell phone, but he is gone. The stress of caring for a loved one with Alzheimer’s can be deadly for the primary caregiver.

For a crushing moment, I’m overwhelmed with a vivid image of Jim and painful loss. Then my phone rang and brought me back to the present. Life goes on, and I have much, much more work to do. This battle isn’t over yet!

As I unloaded my car, I heard the distant rumble of thunder. Droplets felt cool on my skin and refreshing to my spirit. It was a perfect time for r-a-i-n to begin a new cycle of life.

http://earlyonset.blogspot.com
Photo courtesy of Randy Kirby, Sedalia MO

Sedalia Walk Exceeds Goals!

2011-09-12T05:55:00.000-07:00

Follow the link below to hear my interview with KMZU radio. I'm sure they only aired a small segment of the interview. You will notice I used the word "awesome" several times, but then it WAS awesome!

Just follow the link and click on my name to hear the interview: http://www.kmzu.com/2011/09/walk-to-end-alzheimers-surpasses-goal/

Sedalia, MO: Organizers prepare for Saturday's Walk to End Alzheimer's |

2011-09-07T20:00:00.000-07:00

Organizers prepare for Saturday's 'Walk to End Alzheimer's' | fisher, linda, organizers - Sedalia Democrat

The Power of Purple! The End of Alzheimer’s Starts With Me—and You!

2011-09-03T14:54:00.000-07:00

Aren’t we all getting tired of the years that have passed without finding the elusive cure for Alzheimer’s? It is time to take up the banner and proclaim we want to end Alzheimer’s NOW.

Alzheimer’s has no cure or prevention and according to the CDC nearly 75,000 die each year from the disease. More than five million people in the U.S. have Alzheimer’s, and worldwide 35 million have the disease. Alzheimer’s Disease International estimates that 115 million people worldwide will have Alzheimer’s by 2050.

At one time, I knew nothing about Alzheimer’s and certainly didn’t think it affected anyone but the elderly. When the doctor told my 49-year-old husband he had dementia, most likely Alzheimer’s, my first reaction was, “They have medication for that now, don’t they?”

After our ten-year journey, I learned many harsh truths about Alzheimer’s. I know that I don’t want to have the disease, not now, not ever. I want to always recognize the people I love and continue to enjoy the talents and skills I’ve accumulated during my lifetime.

I don’t want anyone in my family to develop Alzheimer’s. I love visiting with my mom and discussing practical and philosophical matters with her—trivial details, or sweeping generalities. If she were to develop dementia, I would miss that important relationship. Not only do I wish that no one close to me has Alzheimer’s, I wouldn’t wish it on my worst enemy.

September is World Alzheimer’s Month and a perfect time to continue your support of the Alzheimer’s mission if, like me, you are a longtime volunteer. It is also an opportune time for newbies to learn about Alzheimer’s and become advocates.

Those of us who know Alzheimer’s from personal experience can show our support of this special month by wearing purple. After looking up information about purple, I believe it is a great choice for the fight against Alzheimer’s.

The color purple symbolizes mystery, and Alzheimer’s is indeed a mysterious disease. Researchers have learned much about the disease, but cannot solve the mystery of how to cure or prevent the disease. Purple represents magic, and we are ready for that magical moment when we live in a world without Alzheimer’s.

Purple is a combination of red (the warmest color) and blue (the coolest color). The color spectrum extremes could be compared to the emotional turmoil Alzheimer’s takes on the family of a person with Alzheimer’s.

It is only the second day of the month and I’ve polished my nails with an X-treme shade of purple. That way I’m sure that I’m wearing purple every day of World Alzheimer’s Month.

For many years, the 21st day of September was known as World Alzheimer’s Day, but since we now have an entire month, this day is known as Alzheimer’s Action Day. I have already changed my Facebook icon to END ALZ and encouraging everyone to do the same if they are ready to take the power of purple to the X-treme.

Why don’t we really make September 21 an action day? When you put on purple that day, take a few minutes to call your senator and representative to let them know Alzheimer’s research is a priority for you. Alzheimer’s research has always been underfunded and in this time of budgetary crisis, the belt may be tightened to the point of drying up Alzheimer’s research funding.

It will take millions of advocates to convince our legislators that Alzheimer’s isn’t going to go away on its own. The cost of Alzheimer’s disease is staggering. It is an expensive disease and a devastating disease for individuals with Alzheimer’s and for their families.

September 21 is Go Purple day! Wear your purple and share your personal story. The End of Alzheimer’s Starts With Me—And You. Individually, and collectively, we can take the POWER of PURPLE to a whole new level.

http://earlyonset.blogspot.com

Women of Courage Facing Early Onset Dementia

2011-08-28T19:04:00.000-07:00

The sports world was shocked by news that 59-year old Coach Pat Summitt, Tennessee Women’s basketball coach, has an Alzheimer’s type of dementia. The news wasn’t uncovered through investigative reporting—the coach made the announcement herself.

Coach Summitt has met her Alzheimer’s challenge head on and fighting back. She knows this disease is not a game and nothing short of a miracle will allow her to win. Still, she has faced the disease with courage and announced that she will continue to coach as long as she can.

With a staff of veteran coaches and a supportive administration, Coach Summitt may be in the game for a long time. Remaining active and involved is the coach’s way of focusing on what she can do rather than what she can’t.

While the coach made national news, on a more personal level I heard from a friend of mine has always shown remarkable courage and faith. She developed frontotemporal dementia (FTD) while she was in her 30s.

After our initial polite greetings, I asked her how things were going.

“Taking it one day at a time,” she wrote on Facebook.

She went on to tell me that she and her husband had separated. This was sad and surprising news because he had always been so supportive and loving toward her. She goes on to tell me that her teenage son feels responsible for making sure she is all right.

Times are tough for them, and she had tried to find a part-time job to give her something to do and to supplement their income. She had already been fired from two jobs. She couldn’t remember all the steps to putting hamburgers together at the fast food place. She worked as a night clerk at a hotel but couldn’t keep anything straight so she was fired from that job too. She has an interview for a third job on Monday.

My friend had her life turned upside down when she was diagnosed with FTD and now with her husband leaving, her world has flipped again. Unfortunately, rather than making the world right side up for her, it is even more out of kilter.

I think about how her husband must have felt to walk away from her. It would be easy to say what he did was unforgivable and let it go at that. But diseases like Alzheimer’s or FTD do not just affect the person with the disease. Relationships are collateral damage. I do not condone what he did, but I do understand how year after year of caregiving takes its toll. I’ve seen caregivers who sacrificed any semblance of a normal life for a decade or more, and some who sacrificed life itself and died before the person with dementia.

Even the best of us are only human. Loving caregivers do what they can for as long as they can. It takes determination and courage to hang in there day after day until the job is done. No one except a primary caregiver knows how hard that is, and I suspect that those caregivers would be the most adamant that my friend’s husband deserves to be eternally punished for his neglect. After all, he abandoned his wife in her time of need, and abdicated his responsibility to a teenager.

As for my friend, she faces the future with optimism and courage. For now, she will be satisfied with a part-time job. She has her faith and a son who loves her.

I don’t understand why life has dealt Pat Summitt and my friend these terrible blows, but I know they are women of courage, an inspiration, and an example for all of us.

Copyright © August 2011 L. S. Fisher
http://earlyonset.blogspot.com

Planet of the Apes: Alzheimer’s Cure Gone Wild

2011-08-19T14:18:00.000-07:00

Every now and then, I just have to go see a movie. A few weeks ago I saw The Smurfs with my grandchildren and daughter-in-law. I can relate to that show because I used to watch The Smurfs on TV with my kids when they were little. Jim and I even used the “Not far now” description when we were traveling, although sometimes our destination was still far, far away.

I really wanted to see something that wasn’t animated and thought Rise of the Planet of the Apes looked interesting. My memories of the Planet of the Apes original movie were fuzzy, but I remembered the story was intriguing and that the apes were more human than humans.

It didn’t take long to realize Alzheimer’s played a key role in the Rise of the Planet of the Apes. Will, a researcher, discovered a cure for Alzheimer’s and the apes it was tested on became highly intelligent. Like too many miracle drugs, the fictional ALZ112 had deadly side effects. Apes became highly intelligent and human died from a virus.

The science fiction movie reflects how much our fears today have changed since the 60s when the original Planet of the Apes aired. In the new story, human holocaust is caused by a pandemic rather than a nuclear war. We are all afraid of getting a terrible disease without a cure.

Oh, wait. Isn’t that what Alzheimer’s is today? More than five million Americans are living with a disease that has no cure or effective treatment.

Although the apes were the focus of the movie, Will’s dad was a key part too. His dad was the compelling reason Will sought a cure for Alzheimer’s.

I imagine some people who would never go to see an “Alzheimer’s” movie might have seen their first glimpse of some of the challenges caregiver’s face. Will’s loving exasperation with his dad is part of daily life for caregivers as they do what they can to care for loved ones.

The one thing that happened in this movie that hasn’t happened yet in real life was the interlude when the drug temporarily “cured” Alzheimer’s. What would it be like to wake up one morning and find your loved one had returned to normal? That would indeed be a day for celebration!

Will we ever see that day? Dedicated scientists have found miracle cures for other diseases. I carry a scar on my arm from a smallpox immunization. My children don’t have the scar because by the time they were old enough, it was no longer necessary. Smallpox was virtually unheard of during their childhood. Polio was another disease I remember being warned about when I was young.

Both of these diseases were challenging, but cures were found. That is what we need for Alzheimer’s—and the sooner the better. Too many people have journeyed down a road with a dead end. The warning signs are there, but with no way to go except forward, the destination is the same for everyone.

I understand Will’s desperation to stop the disease from taking his dad. I’ve felt that desperation, and I’ve seen it in the eyes of other family members when they hear the diagnosis is Alzheimer’s. Finding a cure seems to be moving in slow motion while we fast forward to the scary parts, and all we really want is a happier ending than we’ve been given. With all the medical advances of the past twenty years, or even the past five years, why can’t Alzheimer’s be cured?

It’s like the key to unlock the mystery of Alzheimer’s is buried in a mountain of keys that all look alike. It seems an impossible task to find the correct key and insert it into the lock. But when that perfect key is found, the lock will spring open.

The cure for Alzheimer’s isn’t just possible in a science fiction movie. The right key is there, it’s just waiting to be found.

Copyright © August 2011 L. S. Fisher
http://earlyonset.blospot.com/

Snapshot

2011-08-13T20:11:00.000-07:00

I worked at the Missouri State Fair this year taking pictures in the Cooperative building. I’ve had this job before and always enjoyed handing over this personal souvenir of the fair. The pictures are taken in front of a backdrop with the year, a life-sized Buddy Bear, and the words “Fun at the Fair.” I snapped the pictures as soon as the babies stopped crying and the adults quit scowling. Another cooperative employee pulled them up on a computer screen and sent them to the printer.

Part of the fun is seeing the priceless expression on a newbie’s faces when he realizes the picture is free. “You aren’t going to get my phone number or email account number to pressure me to buy something else?” one man asked.

“No, we aren’t even going to ask your name,” I replied. “We just take a picture and give it to you.”

Having their picture taken is on some people’s “must do at the fair” list. They walk through the door and immediately get in line to have their picture taken. One man said, “We have fifteen of these on our refrigerator—one taken each year.” Another man said, “This is our annual family picture.” A woman said with surprise in her voice when she looked at the picture of her daughter, “She’s taller than Buddy Bear now!”

A lot of us have annual events that mark the passage of time. It may be a family reunion, a holiday, or the State Fair. It’s amazing to compare snapshots year-to-year and see how we have changed. It’s always a little bittersweet when you look at your children, or grandchildren, and visually time travel the distance from one year to the next in a veritable blink of an eye.

Pictures used to be harder to take and people my age didn’t grow up in front of digital cameras and cell phones that send pictures to the Internet in a few clicks. We had to buy rolls of film with 12 or 24 pictures on them. We snapped away and then sent the film off to be developed. So we paid for film, paid for photo development, and then threw away about half of the pictures because they didn’t “take.” The good thing about the old-fashioned way is we ended up with print photos. Now, I take hundreds of pictures and store them on my computer, and seldom have print copies of them.

Snapshots are a pictorial history of our lives. They can help us retrieve memories that are filed within the deepest recesses of our brains. Sometimes a picture can remind us of how the sun felt on our skin, or how the breeze smelled. Snapshots are a way of time travel without using any mythical machine.

When Jim went into the nursing home, we surrounded him with photos of family. He had several small photo albums to remind him of better times. Occasionally, he would look at a photo and say the names of the people in the pictures.

I brought pictures of Jim on my advocacy trips to Washington DC. The first picture in my small album was of Jim dressed in his western shirt, Levis, and cowboy hat before dementia changed him. The second picture was of the early stages, what I called his eccentric stage, when he wore a denim jacket decorated with pins and his battered nametag from Branson. In the middle stages, the picture was taken at the park and he wore a Kansas City Chief’s shirt and sweatpants. His eyes have a blank look. Then in the later stages, the picture showed Jim in the nursing home hallway sitting in his merry walker.

Now, most of the snapshots are put away, and I only look at them occasionally with smiles and, sometimes, tears. The pictures are a one-dimensional view of a full and rich lifetime of memories.

Special events roll around annually and in the meantime, we will snap away to fill our computers and photo albums with people we love and places we visit. Life goes on and we continue to take pictures and record today for tomorrow’s history.

Copyright © L. S. Fisher August 2011
http://earlyonset.blogspot.com/

Look Into My Eyes

2011-07-31T14:35:00.000-07:00

I used to play a game with my grandson where I put my forehead against his and said, “Look into my eyes!” For some reason he always thought that was funny. It might have been my goofy tone of voice, or else he could see something in my eyes no one else could.

Recently I found out just how deeply an optometrist can look into my eyes. While I was on vacation, I saw some flashes of light in my left peripheral vision and a few quick Internet searches later discovered that it could mean a detached retina. Knowing that doing something soon was the key, I tried to find someone to look at my eye on a weekend in a tiny town in Maine. Well, that just didn’t happen so I made an appointment as soon as I got home.

After dilating my eyes, the optometrist used a powerful scope to examine them. His verdict was that my retinas were in fine shape, and I didn’t have any eye disease. That was the best kind of news for me to hear. After all, my vision is horrible and I didn’t need anything to make it worse.

Now it seems that eyes may be a way to detect Alzheimer’s. Anyone who has been through the diagnostic process, especially with younger-onset dementia, knows just how painstakingly slow, and expensive, getting a diagnosis can be. It is no wonder that some people skip the testing and just assume they have Alzheimer’s.

Researchers have found a couple of different biomarkers in eyes that would indicate Alzheimer’s disease or the risk of getting Alzheimer’s disease. A new study from Australia discovered that blood vessels in the eyes of people with Alzheimer’s were a different width than those who did not have the disease.

Several years ago, researchers at Boston University found amyloid (the substance in Alzheimer’s plaques) in the eyes of people with Alzheimer’s. Some of the original researchers have been working several years on a laser scanner for early detection of Down’s and Alzheimer’s.

It takes years for research to be put into common use and the eye test for Alzheimer’s is no exception. So it doesn’t look like easy detection will happen soon.

You may be wondering why researchers would be trying to detect Alzheimer’s early when there isn’t a cure available and all current medication does is delay the symptoms, not the disease. One of the most compelling arguments for early diagnosis is to make sure you have Alzheimer’s and not a treatable condition.

It took us nearly two years to get a diagnosis for Jim. At first, we thought his symptoms might be from depression. When treating the depression didn’t help, he was checked for vitamin deficiencies, diabetes, AIDS, and other conditions that we probably didn’t even know they were ruling out.

After psychological testing, we learned that Jim had dementia—and the most likely cause was Alzheimer’s. This brought about a new series of tests. One scan indicated damage from a stroke, but a more sensitive scan showed general brain atrophy rather than stroke damage. A few specialists later, the Alzheimer’s type of dementia diagnosis seemed most likely.

So how would earlier detection have helped? If Jim had been able to take the Alzheimer’s drugs, they would have been more effective during the early stages of the disease. More important to us, we didn’t ignore a treatable condition with the assumption that he had Alzheimer’s.

I had good insurance, or we could not have afforded to explore all the possible reasons for Jim’s problems. Not everyone is fortunate enough to have insurance to pay for the endless testing to rule out reversible conditions.

If an eye exam could be used as a screening tool, it would be an inexpensive way to monitor your health. Looking into your eyes could mean you would know if your symptoms are from Alzheimer’s, or whether you need to keep searching for a different, and possibly treatable, cause.

Copyright © July 2011 L. S. Fisher
http://earlyonset.blogspot.com/

Never a Dull Moment

2011-07-22T11:14:00.000-07:00

Last Friday, I visited Four Season Living Center to deliver a packet to the Walk to End Alzheimer’s team captain. I parked my car in my usual spot. My eyes automatically settled on a certain window; I swallowed hard and blinked back the tears. Jim lived in that room for four years, and we spent a lot of time there. Each day when I visited him, I didn’t know what to expect, but it seemed like there weren’t too many dull moments.

I didn’t recognize the lady behind the reception desk, but while I was talking to her, Danna walked up behind me. She greeted me with a smile and a hug.

“The lobby looks different than it did when the deer came crashing through and jumped into Jim’s room,” I said. For the benefit of the new worker, I briefed her on the deer story.

“It’s strange that you walked in here today,” Danna said. “I just got off the phone with Gwyn’s family. They wanted to know if we had a copy of the newspaper article about the deer. Gwyn passed away last week. Suddenly. She was only 46.”

I was shocked, and it took a minute for it to soak in. Gwyn, gone, when all I could think about was her sense of humor and how she was so full of life.

Danna called Gwyn’s family back and I talked to them. It seems that Gwyn had often told the story about the day the deer came to visit the nursing home. I promised to send them the “deer” story from my journal. Here is an excerpt from the story.

Oh, Deer!

When I arrived at Four Seasons, I saw broken glass in the lobby and the admissions office.

“Linda, did you hear what happened?” Richard, the administrator asked me.

“Yes, they called me, but I can’t visualize how it happened.”

“The deer broke through that window over there,” he said pointing to a gaping hole in the south wall. “Then he ran across the lobby and into Pat’s office...”

“And I was talking on the phone,” Pat said, “this deer came charging into my office. I was just petrified. I just hung the phone up. I can’t even remember who I was talking to. The deer crashed out my window and ran across the lawn. Then we saw him leap through a resident’s window.”

“Then Lois ran down the hall and into Jim’s room and jumped on the deer,” Richard said.

“What? You jumped on the deer?” I asked, looking at the director of nursing. It was hard to believe that someone would do such a thing. “Where was Fred when all this was going on?” Fred was the nursing home’s adopted greyhound.

“He was right here, but he seemed to be as surprised as we were,” Richard said.

I walked rapidly down the hallway, hit the button to disarm the alarm and pushed the door open to the Alzheimer’s unit. Jim’s room was a shambles, with fragments of glass still in his air conditioning unit. Smears of blood on the floor, and deer hair stuck in the cracks and crevices made Jim’s room look like a crime scene.

Gwyn and Mary started filling me in on the morning’s events: When the six-point buck made his unexpected entry through the window, most of the residents were in the dining room eating breakfast, except Jim, who was wandering the halls.

Mary was just getting ready to take Jim to his room to feed him when the deer careened into the room, glass and blood flying everywhere. Lois arrived on the scene, pinning the thrashing deer to the floor with her best wrestling hold. Gwyn grabbed a blanket and told Lois she should get off the deer. Gwyn threw the blanket over the wounded animal, then decided to sit on the deer to make sure it didn’t get up and run down the hall.

“I was sitting on the deer, hanging onto both antlers, and he started bleeding out of his mouth. I said awwwwwwww, and let go and started petting him. Someone said ‘what are you doing!’ and I grabbed hold of both antlers again.”

Conservation agents responded to the 911 call and cut the wounded deer’s throat. The agent asked Gwyn if she had a hunting permit.

“No, why?” Gwyn asked him. She was alarmed, wondering why she needed a hunting permit when all she did was sit on the deer.

The agent started writing. “Oh, no!” Gwyn was thinking, “I’m going to get a ticket!” Instead, the conservation agent wrote out a permit allowing Gwyn to keep the deer.

“I’m from Arizona,” Gwyn told me, “where the deer stay in the woods where they belong! I had never even seen a deer up close. I don’t know what I was thinking, other than I couldn’t let that deer get to my residents!”

Like I said—never a dull moment. I can still hear Gwyn’s husky voice and her laughter.

http://earlyonset.blogspot.com

My Recollections, Our Memories

2011-07-11T21:43:00.000-07:00

“Mom and I went to the Mennonite restaurant to eat, and there was a hearse parked right in front of it,” I said to my brother, Donnie. I had stopped by the nursing home to visit him while I was in town. “I couldn’t help but wonder if a coffin was in the back—in this sweltering heat! Mom said, ‘Even hearse drivers have to eat.’” I told Donnie about my covert glance into the hearse, and we shared a laugh about my concern.

Donnie’s speech is slurred from strokes, and I have to listen closely to hear what he has to say. The hearse story reminded him of a memory. “Do you remember when Butch Gardner bought that old hearse? He thought he was really going to get the girls to go out with him, but none of them would ride in the hearse.”

I laughed at the memory of the hearse. “That wasn’t Butch that owned that hearse,” I said, delving into my own memory. “It was a guy named Bruce—he was Claude and Leroy’s cousin. He was a good-looking guy, and I did go out with him in the hearse. Mom and dad disagreed on whether I could go or not, but they finally let me. The date turned out to be the two of us and a whole carload of kids in the back.”

“Yeah, I remember riding in the back,” Donnie said. “I thought it was Butch.”

“Remember, we went to a creek and went swimming. That was my ‘date’ in the hearse.”

“I think that was our club that went to the creek in the hearse,” Donnie said.

“I believe it was too,” I said. A big group of us country kids formed a club and went on different activities together. Butch was in that club, so that’s probably why Donnie thought the hearse belonged to him.

“Do you remember the skating party?” I asked. “That was the second time I ever saw Jim. I told Jim our club was going to be at the skating rink and he met us there. He wore a shirt with the sleeves ripped off.”

Donnie nodded and I knew that he too was remembering Jim. After Jim and I greeted each other, he went to get his skates. I sat on a bench next to Claude to lace up my skates. “Is that guy bothering you?” Claude asked. I’m sure he thought Jim was some kind of local punk. “If he is, just say the word and I’ll straighten him out!”

I reassured Claude that I knew Jim and had invited him to the skating party. I was touched since Claude was a mild mannered kid and Jim was a former Golden Gloves boxer.

Donnie and I laughed over our shared memories.

In a serious moment, Donnie said, “I think I know more people that have died that I know who are alive.”

“I know what you mean,” I said. The memories I had just shared about Claude and Jim, once a shared memory between the three of us, is now mine alone. Both of them are gone.

I kissed Donnie on the cheek, feeling good about our visit. Some days he is depressed or upset, but today we had found a happy place in our shared memories.

Our visit made me remember how vivid Jim’s memories were before dementia erased them. Before dementia, little slices of life lived in Jim’s memories long after I had forgotten them. I thought about how sad it was when our memories were gone, and how lonely I felt when Jim couldn’t remember our special times together.

Our memories are flawed because we each see life from an individualized perspective. Certain moments in life are etched into our brains with clarity, while others are fuzzy and out of focus. The older we get, the more memories become so buried that we may never retrieve them again.

Memories may be distorted by time or disease, but if we voice our recollections, those reminiscences are a way to reconnect to a shared past. After stories are erased from our brains, they can linger forever in our hearts.

Copyright © July 2011 L.S. Fisher
http://earlyonset.blogspot.com

This Amazing Country

2011-07-05T18:05:00.000-07:00

Around Independence Day, we often examine our reasons for being proud of our country and count our blessings for living in America. To celebrate this holiday, we eat ourselves silly at picnics and backyard barbeques, take advantage of sidewalk sales, listen to patriotic music, have fun in the sun, drag out all things red, white, and blue, and set off thousands of dollars worth of fireworks. We fairly explode with pride in our country.

I went to the lake to see the magnificent fireworks shooting into the sky over the dam. The display was rivaled by nature’s thunder and lightning. I overheard a woman talking about her plans to watch a pyrotechnical display in a nearby town the next night. She said the best vantage point was the nursing home parking lot. I thought of how Jim hated the sounds of fireworks because they sounded like war to him. I tried to keep him away from the sights and sounds of the holiday. Do you know what an impossible task that is? I wonder if other people with dementia might not understand why the night is full of loud booms and bright lights.

No doubt, we live in an amazing country with opportunity for all. This doesn’t mean everyone appreciates the wide-wonderful country we call home. We find a lot to complain about on a regular basis—the price of a gallon of gas, the government (especially when our political party is not in power), the weather, taxes, and all those immigrants—illegal or not.

This country was built on immigration. Other than Native Americans, we are in this wonderful country because our ancestors pulled up roots and transplanted themselves in America. I cannot imagine how a person could leave his homeland and start over in a new land, or in a new world, as it was known. They came here knowing they would never go home again. To me, this is as attractive as it would be to move to a different planet.

Our newspaper ran a contest for local people to write about why they were proud to be an American in fifty words or less. Since Saturday morning was a more laidback day than normal, I read the short, short essays written by proud Americans. One really caught my eye. Vietnam veteran, Larry D. Stevenson, wrote: “Drafted into the Army, served a tour in Vietnam where I was involved in heavy combat. Received this nation’s second highest combat award, the Silver Star. Came home to a country in turmoil over the conflict. What makes me proud of that? The rights we, as Americans, have to voice our opinions for or against our government’s actions.”

When we can be proudest of the freedoms that hurt us most, we have achieved a higher level. I’ve often noticed that the men and women who have sacrificed the most for this country understand this more than others.

We aren’t proud of our country because everything is perfect. Part of the amazing part about our country is the way we embrace the imperfect, contrary to our own personal preferences, and our tolerance for the melting pot of nationalities and personalities that make up the citizens of this country.

We can bellyache about what is wrong in this country fully confident that although others might not like it, they can’t stop us. Before we label a practice or person as “un-American” it is time to give serious thought to want makes America special. Could it be that the very things we think are un-American are, indeed, the embodiment of why this is a great country?

Copyright © L. S. Fisher July 2011
http://earlyonset.blogspot.com/

Glen Campbell Shows True Grit After Alzheimer’s Diagnosis

2011-06-27T20:39:00.000-07:00

During a People magazine interview, Glen Campbell and his wife, Kim, revealed that he has Alzheimer’s. Seventy-five year old Campbell plans a Goodbye Tour when his new album is released this summer. It takes courage and grit, true grit, to make this announcement to his fans before the tour.

How forgiving will fans be? Some fans are going to notice the mistakes, as will the critics. David Lindquist’s titled his June 5 review of Campbell’s performance at the Palladium concert hall, Carmel, IN, “Glen Campbell gives mystifyingly bad show.” In his review Lindquist said, “Facing a sold-out audience nestled in a world-class room, Campbell came across as unprepared at best and disoriented at worst.”

Perhaps this concert was the wake-up call for Glen and Kim Campbell to set the record straight. Kim said, “Glen is still an awesome guitar player and singer, but if he flubs a lyric or gets confused on stage, I wouldn’t want people to think, ‘What’s the matter with him? Is he drunk?’”

I’m sure Alzheimer’s caregivers know what Kim is feeling. Each person has talents that are lost in the labyrinth of Alzheimer’s. Dementia is relentless and unforgiving as it takes away a lifetime of talent and achievement.

Glen Campbell has played the guitar since he was four years old. His talent was his ticket out of poverty to stardom. He has accomplished heights that most musicians just dream about—Gold, Platinum, double-Platinum albums, CMA Male Vocalist of the Year and Entertainer of the Year, four Grammys, and induction into the Country Music Hall of Fame. Campbell’s music crossed over to top both country and pop charts. “Rhinestone Cowboy and “Southern Nights” were both No. 1 hits. Campbell co-starred in True Grit with John Wayne and Kim Darby, and he sang the title song.

Lindquist goes on to describe Campbell’s performance, “He mangled lyrics (despite unabashed use of video prompts on three onstage monitors), clanged countless off-key guitar notes and generated zero rapport with the crowd.”

I can imagine how Kim’s heart must have sunk. I remember sitting at a family reunion watching Jim struggle to play music with his relatives and some family friends while he was still in the early stages. I remember a mediocre guitar player (one of the invited “friends”) telling Jim he was in the wrong key. This man who had no talent kept criticizing Jim’s playing. Jim just seemed to be in his own little world, but it made me angry. Jim wasn’t playing a concert hall where people had paid dearly for tickets—he was playing at a small park for people that loved him and were forgiving of the occasional mistake. Sometimes Jim forgot lyrics to songs he had sung hundreds of times, or he might play the wrong song in response to a request. Other times, he would play “Buckaroo” from beginning to end without an error. It was always worth the false starts to hear our favorites.

“Campbell struggled to even communicate with long-running band leader T. J. Keunster,” Linquist wrote. “‘What key? . . . Who wrote it? . . . I like this song,” served as an evening-long mantra . . .’”

These are classic communication mistakes of people with Alzheimer’s. These phrases are familiar to Glen from his years of playing music. When words failed him, he fell back on them.

Will Glen Campbell go through with the Goodbye Tour? If he does, will it be successful? Now that people know why he did not perform to his usual standards, will they be forgiving?

Jayling, a fan who attended the concert, posted a response on the Lindquist review: “It was a flawed show, yes. But overall I enjoyed the show.”

To perform this Goodbye Tour, both Glen and Kim Campbell will need to show more True Grit than Rooster Cogburn had in the movie. Glenn’s witty repartee may be gone and he may stumble on the words to some of his own top 10 hits, but for those who love him these flashes of brilliance that made Glen Campbell a legend in his lifetime will be worth the wait. Those fans will listen with love and applaud Campbell for what he can do, and forgive what he can’t.

Copyright L. S. Fisher, June 2011
http://earlyonset.blogspot.com/

The Call I Never Made

2011-06-23T10:37:00.000-07:00

Have you ever had someone on your mind and think, I’ll call tomorrow, or next week? Then, you don’t get around to making that call—you just put it off one more day, and then another.

A few weeks ago, my caller ID was so full that I decided to delete some of the calls. As I was clicking delete, I saw a call from my friend Ted from more than a year ago. That reminded me that I should give him a call and see how things were going—see how his beloved wife Norma was doing. Ted was a devoted caregiver for Norma, who had been in a nursing home for many years.

“You ever see that movie The Notebook?” Ted asked me a few years back. He had invited me to Cracker Barrel, and he was digging in to chicken and dumplings.

“Yes, I saw it,” I said. “It was a beautiful story, but it made me cry.” Most stories about Alzheimer’s do make me cry, even if they are fiction.

“Me too,” he admitted. “What did you think of the ending?”

“It was a sad ending, but it brought the story full circle.” I wasn’t sure where Ted was going with this. I thought the ending was a bit of a stretch as far as believability. The odds are against an old couple dying at the same time.

“That’s how I want it to be for Norma and me. I know it won’t happen, but I wish we could just go at the same time.” Ted took a drink and I could see the wistful look on his face.

“You have to go on living, Ted. You can’t just die to make the ending come out to suit yourself.”

“I know that,” he said. He smiled and his eyes glistened with mischief, and he launched into a funny story.

Ted and I met at a Memory Walk awards luncheon about twelve years ago. I don’t think the Alzheimer’s Association really knew what to think about us. We tormented each other about how much money we could raise and whether Ted in Jefferson City or me in Sedalia could have the most successful walk. Outwardly, we were rivals, but it wasn’t long before we discovered that our friendship was much more important than the competition. That was saying something for two people as competitive as we were.

We ran into each other from time to time—I attended his chicken dinners and Ted drove to Sedalia to come to our Night to Remember dances. We not only spent money at the other’s auction, we would bring items to be auctioned off.

Occasionally, we would “meet in the middle” for breakfast. It was at one of our breakfasts that Ted told me his story for Alzheimer’s Anthology of Unconditional Love. I took notes, typed the story, and dropped it into the mail to him. He called me as soon as he received the story. “Linda Fisher,” he said, “I can’t stop crying long enough to read this story.”

We talked often on the phone, but days turned into weeks, weeks into months, until a year passed. I really felt a strong urge to talk to Ted. I had his home number and cell number programmed into my phone. But it seemed that I was always going to finish a report, answer an email, or edit just one more story first. Another week passed without making the call.

Then, on Tuesday as I finished a few things at work before my trip to Maine, I picked up the phone in response to hearing my name paged.

It was Joetta from the Alzheimer’s Association. “Linda, I wanted to let you know that Ted Distler passed away.” I was just stunned. “He was a recluse for about the last year. He never left his home and never let anyone in to see him.” She went on to tell me about the changes in Ted, a friend who somehow sank into depression, and I never did anything to help. I felt like I had let him down at the time he needed me the most.

Then, I was filled with regret that I had never made that phone call—hadn’t reached out to my friend. Now he was gone, and I could never make it right. There would be no more moments to laugh and joke with Ted.

“Is Norma still living?” I asked Joetta.

“Yes, but she is fading fast and they don’t expect her to last long.”

I thought about chicken and dumplings at Cracker Barrel, a football game, breakfast, auctions, dances, chicken dinners, sitting on a park bench while I interviewed him for a research paper, a hug and kiss on the cheek—my friend, Ted. So many images and good memories of a dear friend. Lastly, I thought of The Notebook and wondered if maybe Ted didn’t get his happy ending after all.

Copyright © L. S. Fisher, June 2011
http://earlyonset.blogspot.com/

Cicada Ice Cream, Really?

2011-06-13T11:22:00.000-07:00

Those pesky thirteen-year cicadas are about to drive everyone crazy with their incessant mating call. Is it any wonder that someone came up with the bright idea of sugar coating cicadas and mixing them up into ice cream? Cicada ice cream, really?

Sparky’s Homemade Ice Cream sent employees to scavenge in their backyards to find the perfect texture for a popular new flavor. What’s not to love about getting the final revenge for the critters making that irritating noise?

The national news picked up the story—because, let’s face it—Columbia isn’t the only place putting up with the bumper crop of cicadas. Cicadas are setting up shop everywhere. The national news reported that the health department ordered Sparky’s to stop selling cicada ice cream. That, according to the original reporter was an exaggeration. Actually, the health department admitted that consumption of cicadas were not addressed in the health code, but they thought the “eww” factor was not to be ignored. Of course, they put it in more official language than admitting it was totally gross and tossed around words like “could not recommend” instead.

That news was probably well received by whoever had the job of de-winging the cicadas before they were boiled and coated with brown sugar and milk chocolate. Hmmm. Rumor has it that they taste a lot like peanuts. I’m supplying these details for the homemade ice cream experts.

So, even though Sparky’s pulled their most popular flavor of the season, this is definitely ice cream weather. Today in Columbia, I heard this strange music. “What the heck is that?” I asked.

“It’s an ice cream truck,” my friend said.

“Think we can catch it?” My mouth watered as I thought of how good ice cream is on a June day.

I’ve always loved ice cream. When Jim and I lived in Manhattan, Kansas, while he finished out his obligation to the U.S. Army, we stopped by the 50 flavors place on a nightly basis. It was a hot summer in Kansas, and I was a hugely pregnant woman with a craving for blueberry ice cream.

We lived in a one-room apartment—two rooms, if you count the bathroom. Of course, we had no air-conditioning. We cooled the room with a box fan in the window. It didn’t exactly cool the room since the outside air was more than 100 degrees throughout the entire month of July.

One day, Jim and I had a spat and rather than argue with a cranky woman on the verge of heatstroke, so he jumped in the car and left me. Now, wasn’t I in a fix? No telephone, barefoot (who could stand shoes?) and pregnant, and my husband just drove away in our only car.

He wasn’t gone long, and soon he came back with a peace offering—a banana split. I never cared much for banana splits because the toppings made it sickening sweet. But, Jim brought it to me, so I sat down at the table with my back to him and tackled the enormous banana split, while he rested on our only other piece of furniture, the twin bed.

I will not gag, I told myself, pumping myself up with a psychological pep talk. I will eat every bite, even if I have to throw up afterward. This is the tastiest ice cream ever—it’s just the syrupy topping I don’t like, and all that whipped cream, and nuts, and that plastic tasting cherry on top. And even the good ice cream is melting faster than the Wicked Witch of the West.

I finally scraped up the last spoonful of the soupy ice cream, and Jim said, “I really thought you would offer me some of the banana split.”

Oh, now, that was just too much! My back was still turned to him, but he saw my shoulders shaking and rushed to throw his arms around me. “Oh, honey,” he said, “I didn’t mean to make you cry.” Yes, the tears were running down my face, but it was from laughter.

“It almost made me sick to eat the whole thing, but I didn’t want to hurt your feelings,” I finally managed to say when my laughter calmed down to uncontrollable giggles.

Later this month, on June 25, I can eat ice cream for a great cause at our second annual “Let’s Cream Alzheimer’s” Ice Cream Social. The Ice Cream Social and silent auction are team fundraisers for the September Walk to End Alzheimer’s.

We will be serving vanilla and chocolate with yummy chocolate chip cookies. We will not be serving cicada ice cream—Really!

Copyright © L. S. Fisher
http://earlyonset.blogspot.com/

A Glass Half-Full Kind of Day

2011-06-06T11:57:00.000-07:00

Last Friday, I ate at Arby’s and when I went to fill my drink cup, I noticed the slogan on the side—“It’s gonna be a glass half-full kind of day.” Well, after all, it was Friday, and I had to agree with the slogan 100%.

If it had been a Monday, I might have thought a little harder about whether it was a glass half-full, or half-empty, kind of day. I don’t do Mondays well since it’s hard for me to get back into the grind after a weekend. Whether I’ve slept late each day of the weekend, or awakened early, it seems the week always begins out of kilter. I’m changing routines and suffer brain lag from the transition from weekend standard time to daylight rise-and-shine workday time. So, Mondays, in general, are a half-empty kind of day—at least until I’m caffeined up and ready to go.

Last Saturday was definitely a half-full kind of day. My mom came to my house and we were able to spend the day together. I’ve learned to appreciate a day with family. It seems that during our growing up years, we don’t fully appreciate family. Parents tell you what to do and when to do it (how dare they?) and siblings like to argue (they are always wrong!). Cousins are easier to like than siblings when you are growing up because you don’t have to live with them. Love them or want to strangle them, spending time with family fills the glass.

Optimists look at a glass and see it as half full. We all know that no matter how thirsty you are, a half glass is most assuredly better than none. The optimist feels blessed to have a half glass of cold, fresh water.

A dry-mouthed pessimist might look at the same glass and go, “Oh, golly gee, that half glass just isn’t enough water to moisten my parched tongue.” He begins to feel sorry for himself. “If I don’t get enough water, then my tongue will be so dry I may never speak again . . .” and so on until he breaks out in a sweat. He may question whether the water is fresh or if the glass is clean. He has high expectations and a mere half glass falls short.

After we marry and have children, we have some half-empty days when the budget is straining at the seams, the car breaks down, the dog dies, or heaven forbid, a loved one is diagnosed with Alzheimer’s.

When Jim was diagnosed with dementia of the Alzheimer’s type, we couldn’t even see the glass, much less determine whether it was half empty or half full. If we could have seen the glass, I believe it would have been empty—at first. Alzheimer’s is a slow process, and if you let the news ruin your life, you might as well throw the glass on the floor and stomp it. But you know what that means? A shattered glass will never hold liquid again. If the glass is broken, even a half-empty glass is an improvement. That is when you move from depression to pessimism, and with a little gratitude for winning small battles, it’s not that difficult to see the glass as half-full. A half-glass kind of attitude might be all that helps you through the tough times. If you let your inner strength kick in, you move forward with determination that better days are ahead.

In life, attitude and the happiness factor may vary from day-to-day, so a goal for a happy life is to have more half-full kinds of days than half-empty ones. Having a few down days shouldn’t affect a glass half-full attitude about life. Who knows, with an optimistic attitude adjustment, the glass may overflow with possibilities.

Copyright © June 2011 by Linda Fisher
http://earlyonset.blogspot.com

Storms Never Last, Do They?

2011-05-28T12:23:00.000-07:00

Missouri has really been slammed by storms—first Joplin and then my hometown, Sedalia. When the tornado sirens sounded in Sedalia and the ominous words, “Tornado on the ground!” were broadcast on the radio, my mind immediately visualized Joplin. The Joplin tornado hit Sunday and like most people, I watched the story unfold on TV. In Joplin, an F-5 tornado splintered lives and left behind a scene from a horror movie.

I knew people in Joplin through Missouri Writers Guild and Business Women of Missouri, and I worried about their safety. At the BWM Conference in late April, two of the women from Joplin told me they had seen the announcement of the presentation I was making at the June 24 Alzheimer’s Caregiver Conference in Joplin.

My friends were safe, but more than 130 people lost their lives. Among the dead were ten residents of Greenbriar nursing home. One of the dead at the nursing home, 70-year-old Richard Elmore had Alzheimer’s disease according to his stepdaughter. The Greenbriar staff was praised for moving the residents to a hallway in the few minutes warning they had.

I’ve seen nursing home staff in action during tornado warnings. One night while I was at the nursing home where Jim lived, the sirens sounded and staff in the dementia unit led people into the hallway and seated them. I pushed Jim into the hallway in his recliner. He seemed unconcerned about the chaos around him as other residents moved up and down the hall and tried to get back into their rooms. Our town had been hit hard by tornados in the 1970s and those of us who remembered those storms were a little nervous. The staff passed out ice cream and the residents settled down to enjoy their treat. The storm passed over without any damage.

Jim had never been scared of storms and had a ringside seat to the 1977 tornado that hit Sedalia. Jim worked at Memorial Park Cemetery and rather that go into the metal building, he parked his truck in the cemetery. His reasoning was that if the tornado got close, he would be safer in the open grave he had prepared for an afternoon funeral. He was too close to the tornado to see the funnel, but he could see the houses across the street exploding. “Okay,” I questioned him later, “just what did you consider bad enough to get into the grave if you didn’t do it when the tornado was just across the street from you?”

“You know, after Vietnam, I just can’t get too excited about storms,” he said. Sedalia looked like it had been bombed, but no lives were lost.

The tornado that hit Sedalia on Wednesday, May 25, destroyed 65 homes, wiped out businesses along 65 Highway, and severely businesses on the south side of town. So much debris rained down on the city and surrounding farmland that lost-and-found centers have been set up to reunite people with belongings swept up in the tornado.

My first glimpse of the damage was on my computer screen at work where I viewed a video taken from the Channel 9 helicopter. My co-workers and I tried to identify businesses and mobile home parks that were in shambles. Semis were tossed onto their sides, highline poles snapped with transformers on the ground, trees broken and flung onto cars, the school bus barn collapsed, and homes were dissected exposing furniture and insulation.

Storm stories have been shared through interviews and social media. Hundreds of photos and videos are available on Facebook and YouTube. I don’t recall ever seeing so many people I personally know on the news. Considering the path of destruction, we were fortunate—no deaths and, thankfully, only minor injuries.

This morning I thought about a Waylon Jennings/Jessi Coulter song Jim used to sing— “Storms Never Last Do They Baby?” The song is a love song about a stormy relationship compared to the storms that disrupt life. Those storms can be tornados or other severe storms, or they can be the turbulence that creates a bumpy ride along life’s journey. The truth of the song is that storms do not last. Storms swoop into our lives, and in a heartbeat, can forever change our familiar landscape. Just when we think it will bring us to our knees in defeat, a rainbow promises that life continues after the storm has passed.

Copyright May 2011 by L. S. Fisher
http://earlyonset.blogspot.com/

Alzheimer’s Action Summit

2011-05-22T19:36:00.000-07:00

For the eleventh time, I made the trip to Washington DC to add my voice to other Alzheimer’s advocates. For the second time my granddaughter went with me.

We were at the airport Saturday morning for our 6:30 AM flight and arrived in DC mid-morning. While we waited for our room to get ready, we rode the Old Town Trolley down to the mall and toured the Museum of Natural History. Sunday, we visited the national zoo to admire the pandas, elephants, apes, and reptiles. Considering the forecast, the weather turned out to be fantastic.

Sunday evening the Summit began with the roll call of the states and a representative from each state told about their accomplishments in the past year. After the roll call, we learned a storm was coming in and the candlelight rally would be held at the hotel.

During the rally, several people spoke, but one that stood out the most for me was twenty-two-year-old Keri Roaten, caregiver for the grandmother that raised her. Just like caregivers twice her age, or even four times her age, Keri’s life has been put on hold. While each caregiver sacrifices many other events in life, it seemed particularly poignant to me that Keri missed activities that most teenagers take for granted. She missed her prom and her college dreams were put on hold. We held our candles high in remembrance and tribute for Keri’s grandmother and for loved ones living with the disease and for those whose journeys have ended.

The first time I lit a candle at the vigil, I had just placed Jim in a nursing home. I was plagued with doubts, fears, and anxiety. Five years later in 2005, I lit my candle only a few short weeks after our journey ended. This year, my heart ached and my eyes burned at the raw emotion of those were at an emotional crossroads.

Monday was a full day that began at 7 AM and ended at 10 PM. We heard Newt Gingrich, a longtime supporter, share his concern about the economic future of this country when, without effective treatment or a cure, Alzheimer’s will cost the American Government $20 trillion between now and 2050. Gingrich is optimistic that the scientific community will have a breakthrough if we invest in Alzheimer’s research. During lunch, Melody Barnes, domestic policy advisor to the President, spoke of President Obama’s serious attention to the fight against Alzheimer’s. She considers the National Alzheimer’s Project Act a step to further research and awareness.

The Summit culminates with legislative visits. We met with the health aides for our senators and our representative to discuss our legislative issues. Senator Blunt dropped by for a photo op.

This year we had a two-fold mission: the Alzheimer’s Breakthrough Act and the HOPE for Alzheimer’s Act. We used a new approach on the Alzheimer’s Breakthrough Act. Rather than asking for a dollar amount for research, we asked for research funding to be driven by what the scientific community deemed necessary to make significant progress. The HOPE for Alzheimer’s Act covers three areas: (1) Early and Accurate Diagnosis, (2) Care Planning that ensures caregivers know all available resources, and (3) Medical Record Documentation.

My granddaughter and I were tired by the time we headed to the airport for our trip home. I hope that someday we can make the trip to Washington, DC, just to sightsee. My wish is for the day Alzheimer’s is one of those diseases that people “used to have” but has been wiped from the face of the earth. Until then, I’ll pack my bags once a year to become a VOICE for those with Alzheimer’s and their caregivers.

Copyright © May 2021 by L. S. Fisher
http://earlyonset.blogspot.com/

Photo of My Mom—What Does It Say?

2011-05-07T10:56:00.000-07:00

The black and white photo of my mom, Lula Capps, is worth a thousand words, but a million words remain unsaid. The picture doesn’t show the color of the rich auburn hair that she always called red. It doesn’t show it pulled back into the ponytail that I remember her wearing on a regular basis. You can’t see that she looked so youthful that she was often mistaken as a sister to her eight children.

The picture doesn’t show her talent as songwriter, singer, and musician. It merely hints of the intelligence of a woman who worked her way up from a sewing machine to management without a high-school diploma. She always taught us to believe in ourselves and that we could do anything we set our minds to do. She wanted her children to grow up to be independent adults with a good education and to have a better life.

She was not the typical mother of the 50s. She didn’t wear housedresses, cook and clean all day, or grow potted plants. She worked at a factory, wore blue jeans, read novels, played her guitar, and drank lots of coffee. On a Saturday night, you would usually find her at Grandma and Grandpa Whittle’s house jamming with her brothers.

The picture does not show the wonderful, complex woman that gave life to the eight Capps kids. It doesn’t show the struggles and triumphs of a lifetime. It doesn’t show the love she has given and received from her family. You see no hint of sadness for the future when she outlived every member of her birth family or the heartache of a woman who held a son in her arms only one time before he died. The picture doesn’t show her beautiful soul, only her lovely face and smile.

My mom was there for me when Jim developed dementia. She drove more than an hour each way to stay with Jim while I worked. She didn’t do this because she had to, but out of love for Jim and me.

To this day, my mom is my role model. She is full of life, healthy and active. She and my Aunt Labetta are always plotting something to add fun to their lives. They sing at nursing homes, plan vacations, and frequent jaunts to the casino.

Mom is spiritual without being overly religious. She talks about God as if she has a direct line to heaven, and won’t take a bite of her meal until she has asked a blessing.

I feel so lucky that God gave me to her and gave her to me, and I want to wish a happy Mother’s Day to the best mom in the world.

Copyright © May 2011 by L. S. Fisher
http://earlyonset.blogspot.com/

Long Term Care Decision

2011-05-07T09:45:00.000-07:00

One of the most difficult decisions a family has to make is determining when it is time to place their loved one in a long-term care facility. The decision is emotionally charged and financially draining.

Our first choice is to keep our loved ones at home and, in fact, 70% of people with dementia are cared for at home. In the early stages of the disease, this is the most appropriate care. As the disease progresses, the primary caregiver must remain vigilant to changes that could make homecare unsafe.

Many times family members will ask me how I knew it was time to place Jim in long-term care. My final decision was complicated, but at crunch time, two important aspects became the deciding factors.

First, Jim only slept about four hours a night, and I was physically exhausted. During his waking hours, it became imperative to be watchful. Providing twenty-four hour a day care for an adult is different than watching over children. As Jim’s reasoning process deteriorated, each day brought new challenges as I coped with escalating situations about driving, wandering off, relentless pacing, anger issues, and depression. He became the telemarketers’ best friend as he agreed to purchases for products we didn’t need or want.

The second deciding factor involved his safety. Even though I hired caregivers, installed an alarm on the front door, and felt like I sometimes had the proverbial eyes in the back of my head, he still managed to wander off from time to time. I took him to a facility for day care only to have them call to tell me they couldn’t keep track of him. He had picked up his guitar and headed off down the road toward the highway.

Eventually, I realized that if Jim wandered off in extreme weather and I didn’t find him in time, we wouldn’t have to make a nursing home decision. I didn’t want my husband to be lost and alone without the ability to find his way to safety.

It was a heartbreaking moment when I admitted defeat. I always knew that Jim couldn’t help being the way he was, but dementia had become the victor. It was time to do what was best for both of us—his safety and my sanity.

My sons and my mother-in-law knew the time had come to find a safe environment for Jim. Other than those three, I didn’t seek or want anyone else’s input. The more people involved in the decision making process, the more complicated it becomes. Too often it is the family members who haven’t helped in the day-in-day-out caregiving that least understand why long-term care has become necessary.

My friend, Ted, kept his wife at home until the stress sent him to the hospital for open-heart surgery. The doctor told Ted to either find a home for his wife or start making his funeral arrangements. That may seem a little extreme, but often the caregiver is the one who dies and then someone else has to make the long-term care decision.

The only people who truly understand how hard it is to be a primary caregiver are those who have been one. Visiting a person with dementia for a few hours or even a few days does not create true understanding. Sometimes our love for the person with dementia throws us into denial.

A diagnosis of Alzheimer’s is hard to accept and if you haven’t seen the day-to-day changes, it is easier to believe the physician has made a mistake. One visitor told me, “I don’t think there’s anything wrong with his memory. He talked about his childhood friends and remembered every detail about Oregon.” Short-term memory goes first, and yes, at that time Jim could remember things that happened thirty years ago, but sometimes couldn’t remember our sons’ names.

The only way to know if it is time to place your loved one in long-term care is to look at the day-in-day-out situation and base the decision on what is best for the person with dementia and the primary caregiver.

Stay fully engaged with your loved one once he or she is placed in a home. Rather than second-guessing the long-term care decision, use smiles, hugs, and thoughtful gifts or treats to make your visits a joyful occasion for both of you.

Copyright © May 2011 by L. S. Fisher
http://earlyonset.blogspot.com/

Predicting the Outcome

2011-04-24T14:30:00.000-07:00

One of my favorite shows, The Mentalist, is centered on a man with an extraordinary ability to predict human behavior. In his job as a consultant, Patrick Jayne the mentalist, always downplays his extraordinary ability as being based on observation. Jayne denies that he has any psychic abilities and maintains they do not exist in the real world. His uncanny abilities often leave others shaking their heads and wondering how he really does it.

A lot of people, in general, and psychics in particular claim to have the inside track on predictions. Most psychic predictions are so general that many events can be interpreted as fulfilling the prophecy.

One of my favorite psychic predictions involved Dolly Parton. The prediction was that she would fall in love with a 300-pound professional wrestler, write a song called “Headlock on My Heart,” and feature her sweetheart in a music video. This is a detailed and specific prediction that set the psychic up for failure. Well, Dolly Parton has a sense of humor and when she read this wild prediction, she wrote the song and asked Hulk Hogan to star in the video—complete with fake wedding between Dolly and “Starlight Starbright.”

Most of us listen to predictions on a daily basis. Predictions may be minor, but we may plan our wardrobe based on the weather forecast, how far we are willing to travel on vacation based on the price of gasoline, whether to change our retirement fund investments based on the stock market, or whether we want to watch reality TV if our favorite is voted off.

Most important predictions concern our health. Through no fault of our own, we may be susceptible to certain diseases based on our genetic makeup. Science has made it possible to predict accurately a person’s health outcome of certain diseases through genetic testing.

The APOE gene has long been connected to Alzheimer’s. Which version you have of the APOE gene can mean that you are twenty times more likely to develop Alzheimer’s (2 copies of APOE-4) or less likely to develop Alzheimer’s (2 copies of APOE-2). Of course, any person may have any combination of APOE genes and most people do not know their genetic makeup and cannot predict whether they are more likely, or less likely, to develop Alzheimer’s. The APOE gene is one of the genes that breaks down plaques.

The hallmarks of Alzheimer’s are two proteins—amyloid beta (causes plaques ) and tau (which causes tangles). Science is beginning to come together to get to the cause of the plaques and tangles.

• Chris Dobson, Cambridge University, discovered that slight genetic adjustments to amyloid beta protein could make it more soluble. Insoluble proteins cause plaques.
• Researchers at Brown University have found that the cell process works in diseased brains but is overwhelmed by misfolded amyloid beta proteins.
• Dr. Jeffrey Kelly, Scripps Research Institute, announced the discovery of several genetic mutations that make people more susceptible to Alzheimer’s disease. These genes are more commonly associated with cholesterol metabolism and inflammation.

As the research comes together, the University of California announced a more accurate method of using MRIs and a neuropsychological assessment to predict whether a person will develop Alzheimer’s. The goal of the research is develop a method to diagnose Alzheimer’s disease in an early stage before symptoms appear.

When we develop a disease, the crucial prediction is the prognosis. Without a breakthrough, predicting the outcome of an Alzheimer’s diagnosis is unfortunately accurate.

Early detection makes a difference in a hopeful outcome for most diseases. With scientific breakthroughs from many different sources, Alzheimer’s may someday be a disease where early detection means successful treatment.

Copyright © L. S. Fisher April 2011
http://earlyonset.blogspot.com

Sources:
Ridley, Matt, Connecting the Pieces of the Alzheimer’s Puzzle. April 2011.
http://online.wsj.com/article/SB10001424052748703806304576242781646480162.html

http://esciencenews.com/articles/2011/04/11/mri.may.contribute.early.detection.alzheimers

The Power of Failure and Rejection

2011-04-18T09:08:00.000-07:00

Last week I attended the Missouri Writers’ Guild Just Write Conference and coordinated the pitch sessions. For those of you who are not writers, pitch sessions are when authors try to sign with an agent or editor who can sell their books to major publishers. Ten agents listened to seven minute pitches from 9 AM to 4 PM.

Some of the authors had worked on their novels for years and in seven minutes tried to convince a professional that their book could be a success. This process is so important to the authors that they are understandably nervous.

“My goal is to not throw up on my shoes,” one author said. I’m happy to report she came out of the session with clean feet and a smile on her face.

Many just came out shaking their heads no. “She didn’t like it,” or “She doesn’t know where she can sell the book,” were some of the remarks. These authors have a chance of success because they did not let the fear of failure, or rejection, keep them from pursuing their dreams.

One young author, Christine Karsh, pitched to four different agents and three requested the first thirty to fifty pages of her young adult novel. She was ecstatic! Taking a chance on rejected may have landed her a New York agent.

Some of the best authors are never published because they are afraid of rejection. Every time I submit a story, I realize it may be rejected. Recently, my local writers’ guild announced the stories to be published in this year’s anthology. Of course, some of the stories and poetry had been rejected. Some authors were angry, one poet said she felt “broken,” and another author just laughed and said, “It’s hard to know what the judge is going to like.”

At our writers’ guild, we use a positive attitude about successes and failures. Often, the same people report both.

“One of my stories won a prize,” I’ll sometimes say when we report our successes.

“Any failures to report?” the president asked at our last meeting.

“I do,” I said. “The story I submitted to Mysteries of the Ozarks was gently rejected.”

I’ve been rejected many times as a writer. If I didn’t take a chance on being rejected, I would never have been published or won any prizes. I have had stories rejected by a publication and resubmitted them to contests and won more in prizes than the publication paid.

Sometimes our fear of failure can hold us back from meeting our most basic needs in life. During this time of high unemployment, some people have their job applications rejected so many times that they have become so discouraged they quit looking. When I was out of work in the early 80s, the situation was the much the same as it is now. I went on job interview after job interview until I successfully landed a job at an electric cooperative. I wound up getting a much better job than had I been hired at one of the places that rejected me.

When I became Jim’s caregiver, I worried about failure. I was plagued with doubts. Would I be able to take care of him? Could I make the best decisions for him? Would I be able to handle years of overwhelming responsibility? I battled with a sense of failure when I finally had to place Jim in long-term care. I felt like it was my fault when Jim was kicked out of the nursing home. If I hadn’t let icy roads keep me away, would I have been able to ward off the dark mood that led up to the incident? My biggest doubts were on this date six years ago when Jim died. Did I fail to find some treatment that would have made a difference?

In my heart I know that everything was done for Jim that could be done, and I’m glad that I didn’t let fear of failure make me give up. Realistically, I knew we were not going to successfully stave off the ultimate destiny of our dementia journey, but it didn’t keep me from wanting to make that journey as happy as it could be.

Every morning when we wake up, we can decide whether we want to play it safe and not take any chances, or we can make the most of our God given talents. If we do not let fear of rejection and failure hold us back, we have unleashed the ultimate power tool for success.

Copyright © April 2011 by L.S. Fisher
http://earlyonset.blogspot.com

The World is Blossoming!

2011-04-11T19:58:00.000-07:00

Apparently, there’s nothing quite like a ninety degree day in April to make the blossoms burst out in full glory. Looking out my patio doors just beyond the indestructible artificial plant on the patio table, redbuds provide a splash of color against the shades of springtime green.

Going to pick up my paper, I first noticed tiny delicate flowers on my lawn, right beside the wild garlic that has popped up since the last mowing. And, oh, yes, the dandelions are in their brilliant yellow stage pretending to be a normal flower. The Shasta daisies in my flower garden have opened up. The scent from the two lilac trees wafts along the breeze and I couldn’t resist stopping and leaning in for whiff of their fragrance.

It’s easier to be optimistic when butterflies flit from blossom to blossom and when birdsongs fill the air. Blustery winds and bone chilling cold seem like only a shadow left from a bad dream. God pauses to smile from fluffy clouds against a cerulean sky.

No season is perfect. Spring is a time of thunderstorms, tornadoes, pesky insects, and reptiles. April is a time of sad anniversaries, those dates that are firmly ingrained in my mind as a time of nearly unbearable loss. In a week, I will pause and remember Jim on the six-year anniversary of our journey’s end. Marking the day I knew he would never again sit on the front porch with a cup of coffee and smell lilacs on a sunny April morning.

I have not been too ambitious today, in fact, I’m resting up from my weekend at the Missouri Writers’ Guild conference. I would have slept later this morning, but before she left for work, Shawna had taken pity on my cat and let her come upstairs. By seven o’clock, Katrina could no longer contain herself, jumped up into my bed, and immediately tried to lie down on my head.

I had spent the morning catching up on email and Facebook. About noon, I decided to relax with my library book. Reading made me sleepy, so rather than take a nap, I decided to go outside for a while.

When I walked around the yard, it was easy to feel the essence of family that used to live here—Jim, his mom and dad. My brother-in-law, Terry, was outside and we looked over the garden spot and talked about the plants that he would plant in the garden.

“Just let me know what you would like me to plant,” he said.

“Well, I really liked those peppers last year, and you know I love tomatoes. Oh, and cucumbers, and zucchini,” I said. My taste buds were singing louder than the birds while I talked about fresh garden vegetables.

“And I’ll plant some lettuce,” Terry said, “for salads and wilted lettuce.”

“I’m thinking about planting some herbs,” I said, “in a container.” I can’t quite see me weeding and tilling in the evenings after I get home from work.

“We planted herbs here,” he said, pointing to the outer edge of the garden. “A few of them are coming up from last year. Here’s fennel, garlic, and chives. I don’t know if any of the other herbs will come up again this year.” We turned over a few dirty, faded plastic markers from last year. Terry had left the markers because, like me, he wasn’t sure if he could identify the herbs without them being in little plastic bottles plainly labeled.

While we walked around the yard, we talked about the mulberry tree, gooseberry vines and blackberry vines, and then I noticed the big may apples. “Hey, I bet mushrooms are up,” I said.

“Ginger didn’t find any yesterday,” he said.

As I walked back through the door to finish my inside work, I was smiling. This would be a great day to just sit outside on the porch and look at all the blooms, butterflies, and signs of spring. Sure, I still miss Jim, but I know in my heart Jim would not have wanted me to waste a minute of this gorgeous day thinking sad thoughts.

Copyright © April 2011 by L. S. Fisher
http://earlyonset.blogspot.com/

VA REACHing out to Caregivers

2011-04-07T11:24:00.000-07:00

The Department of Veterans Affairs is pleased with the success of their REACH VA pilot program to help caregivers of veterans with Alzheimer’s and plans to expand the program nationally. By relieving caregiver stress, the veterans receive better care at home.

The REACH program provided caregivers:

• Twelve in-home visits and telephone counseling sessions
• Five telephone support group sessions
• A Caregiver Guide with forty-eight behavioral and stress topics
• Safety and behavior management education
• Training for health and well being

The caregivers who had the benefit of these program reported they were less depressed, not as frustrated, and were less burdened on a daily basis with caregiving duties. Caregivers also reported fewer dementia-related behaviors with the veteran under their care.

I applaud the VA for recognizing the benefits of taking care of the caregiver. If your loved one with dementia is a veteran, you should check into the REACH VA program.

If your loved one is not a veteran, please contact your local Alzheimer’s Association chapter. They, too, provide training and support for caregivers.

The five core services of an Alzheimer’s Association chapter:

1. Information and Referral
2. Care consultation
3. Support Groups
4. Safety Services
5. Education

Details on these services can be found at http://www.alz.org/we_can_help_local_chapters_wch.asp

As a caregiver, my lifeline was the partnership I formed with my local chapter. Through their educational programs I gained confidence as a caregiver, knowing I had the benefit of expert knowledge. I received respite funds to help defray the cost of in-home care. At support group I learned from the facilitators and from the experiences of other caregivers. Through my local chapter I registered Jim with Safe Return. I pored over every newsletter the chapter sent out to learn about new treatments and just to find out what was going on with other caregivers.

The VA has taken a giant step in the right direction to REACH out to caregivers. Visit www.caregiver.va.gov to learn more about this program.

Caring for a person with dementia can be overwhelming. The health and wellbeing of the caregiver is crucial to keep our loved ones at home as long as possible. By knowing and using the resources available in your community, you will be a better caregiver.

Copyright © April 2011 L. S. Fisher
http://earlyonset.blogspot.com

For Every Action, There Is a Reaction

2011-03-26T15:45:00.000-07:00

The last few weeks have reminded me that for every action there is a reaction. I’m not talking about Newton’s Third Law or even writing advice I’ve received over the years. No, I’m talking about everyday common occurrences.

Since I live in the country, I may be a little closer to nature than my city-dwelling friends. Last Saturday, I looked outside to see five cows grazing in my yard. I’m not afraid of cows, but noticed one of the “cows” was actually a bull so I stayed inside until the bull decided to butt my satellite dish. I reacted by yelling in my no-nonsense voice, “Get out of here!” The big guy turned toward me and gave me a look that indicated he wasn’t scared of me at all and didn't budge until my brother-in-law chased them away.

A few days and a few cattle visits later, one-half of my satellite programming quit working. It seems that half my programming is on one satellite and the other half is on a different one. My luck, the half that was working had C-Span and info TV, and the half that was out of commission carried American Idol.

For $98, they would look at my dish or I could purchase a service contract for $6 per month with a five-month obligation. I agreed to the service agreement. My daughter-in-law walked in while I was finishing my conversation. She went outside and looked the dish over, tightened up a few loose screws and the TV came back on. “I don’t know how long it will last,” she said.

I couldn’t see cancelling the appointment so I asked about upgrading to DVR. I had wanted to do this for months, but hadn’t done it. The technician not only upgraded my system, he programmed in American Idol so that I didn’t have to miss it while I was at the Alzheimer’s Walk meeting that night.

He planned to come back Wednesday to bury the cable and mount the dish on a pole. Wednesday morning, I turned on the water to take a shower and the lukewarm water quickly turned cold. The water heater had quit. I called my service provider and they said they could come Monday. Monday? No hot water until Monday?

A friend of mine came over and pushed the reset button for the water heater, which was all it needed the last time, and sure enough, it started working again. In fact, the water was boiling hot. Apparently, the service company reacts more swiftly to boiling water than cold water. They agreed to come the next day.

The dish man hadn’t showed up by almost ten, so I called the 800 number to see what was going on. While I talked on the phone, I headed down the hallway and almost stepped on a snake. It didn’t matter to me that it was a harmless, ring neck snake—a snake is a snake. My reaction: I screamed, backtracked, and started telling the guy on the phone and my friend that a snake was IN MY HOUSE. If I’d been by myself, I might have just moved out until the snake was removed. The way it was, my friend put his foot on the snake to keep it out of the nearby bedroom, and I brought him an oven mitt to pick it up.

“How did he get in here?” I asked.

“Probably that little crack under your storm door.” I had left the entry door open. Oh, yeah, Jim installed that storm door after he had dementia. He wanted to angle it slightly, but couldn’t understand that he was angling the bottom of the door the wrong direction. I finally convinced him to leave it straight so that we had a small crack instead of big gap.

It’s been quite a week, this week. A lot of action and reaction going on, for sure. Today, I’m relaxing and watching the snow come down. It’s hard to believe I was wearing summer clothes earlier this week. My reaction to the snow? At least a snake won’t be out in this kind of weather.

Copyright © March 2011 by L. S. Fisher
http://earlyonset.blogspot.com

Set My Heart on It

2011-03-20T13:52:00.000-07:00

With only twenty-four hours in a day, I don’t get nearly enough done. I move from project to project trying to keep one step ahead of the next deadline. I have so many things that I have my heart set on, that sometimes, I just mentally flip a coin to see which project can wait—or be cancelled.

This weekend, I hustled to get a bundle of stories to the post office, and headed to the lake to watch my youngest granddaughter cheer at a basketball game. It was fun to watch her shake her pom-poms and chant cheers through a megaphone. My grandson played with his cars on the bleachers where the grownups watched the game and, of course, the cheerleaders.

After lunch at a Mexican restaurant, I decided that while I was in the neighborhood, so to speak, I’d drop in on my brother at the nursing home and see my mom at her nearby apartment. I called my mom since she doesn’t just sit at home, in case someone wants to drop by. She assured me that she would be home soon. Rather than wait at her house, I decided to make use of the time to visit my brother, Donnie.

“My roommate needs help,” Donnie said when I walked through the door. His strokes have interfered with his speech, but he was sitting in his wheelchair, bright eyed. He certainly looked much better than he did a few weeks ago when I visited him in the hospital. At the hospital, he was so miserable that he just kept saying he wanted to die.

“Okay, I’ll go get someone,” I told him.

When I returned to the room, he looked at me and said, “Who are you?”

“I’m your sister, Linda,” I said. Donnie is nearly blind so I knew it wasn’t that he didn’t know who I was, he simply could not see me well enough.

“Oh,” he said. When the aide came in, she mentioned that Donnie’s light wasn’t working. This started him on a rant about everything that wasn’t working in his room: the nightlight, the door that wouldn’t shut on his closet, and his opinion of housekeeping for not fixing everything.

“I’ll tell them,” the aide said, making her exit when she realized Donnie was past teasing and had become angry.

“I can’t walk, can’t move my arms, and can’t fix the things that are wrong. They haven’t even turned my calendar,” he said. Sure enough, the calendar with giant numbers was still on February. I flipped the calendar and sat down on his bed.

Now that he was a little calmer, I told him how much better he looked. I asked him if he was eating and he started telling me about refusing to eat the “pre-chewed” food as he called it.

I knew what Donnie was talking about because Jim’s food was eventually “mechanically softened” and later pureed. It never looked appetizing, and I told Donnie how my niece referred to Jim’s “mystery meat” when we couldn’t determine what kind of meat it was.

“Are they giving you regular water now too?” I asked.

“Hell, yes,” he said. “I told them to leave that thickening out. That stuff just made me thirstier.”

That reminded me of when Jim strangled and choked too easily and his liquids were thickened. I always thought that his thirst could not be quenched and felt bad that he couldn’t have his big travel cup filled with ice water.

After our visit, I hugged Donnie and told him I wouldn’t stay away so long next time. “I want to spend more time with my family,” I said.

“Family is the most important thing,” he told me. “If it wasn’t for mom and my brothers and sisters, I would just give up.” He wiped tears from his eyes with his left hand, the one he uses the best.

By the time I left the nursing home, the soft rain had changed to a torrential downpour. I didn’t let the rain delay me from visiting my mom and merrily splashed through the puddles of water on her walkway. When I set my heart on it, a thunderstorm and downpour won’t even slow me down.

Copyright © March 2011 by Linda Fisher
http://earlyonset.blogspot.com/

SuperMoon – Will it Be a Full Moon on Overdrive?

2011-03-13T18:55:00.000-07:00

I remember having a discussion with a friend who thought I was crazy when I mentioned the full moon caused chaos at the nursing home.

“That’s an old wives’ tale,” he said. And he laughed at me.

“Hey, if you don’t believe me, just ask anyone who works in a nursing home,” I said. I’ve always been a skeptic about the moon’s influence on human behavior until Jim was a resident at a nursing home. No one had to tell me when the moon was full—it was obvious from the behavior. Residents were restless and agitated at a complete different level.

Okay, so I’ve done a lot of internet research and the scientific sites tend to scoff at the idea that the moon, full or otherwise, would influence behavior. As one site points out, the moon is there all the time whether the sun reflects off it or not.

Astrologers, not astronomers, think the March 19 SuperMoon may cause an increase in natural disasters. In fact, some think the influence of the approaching SuperMoon may have had something to do with the disaster in Japan. I’m not one to align myself with astrologists, so I’m not going to propose that the SuperMoon has anything to do with earthquakes, but I wonder if it will affect human behavior.

Life sometimes teaches us things that science can’t prove. While trolling around the internet, I came across something that makes sense to my practical side. It started with one person who posted that her sleep was disturbed during the full moon. She slept fine the rest of the month, but during the full moon, she could not sleep. Several other people reported the same problem.

Doesn’t this make sense? Scientific studies show that our sleep is disturbed when we have lights on in our bedrooms from TVs, clocks, cell phones, and all other electronic equipment. The less light, the higher quality our sleep is. At the nursing home, every room had a window. On full moon nights, moonlight would make the outside brighter than any other time of the month and disturb sleep. Maybe it was a cumulative effect on sleep building up to the full moon.

I don’t know about you, but I tend toward, well, a little lunacy when I’m sleep deprived. My reasoning skills are not as sharp, and I certainly lean toward my cranky side. If anyone scientifically charted my behavior, it might well ebb and flow with the moon’s fullness.

The moon will be closer than it has been in eighteen years. I know it’s going to disturb my sleep because it is supposed to be spectacular to see, and I want to see it.

You may be like my friend and most scientists, but before you scoff make note of the behavior of those around you. If nothing else, they may react to the weird looks you are giving them.

I can’t help but speculate that the SuperMoon might be like a full moon on overdrive. I believe people’s behavior will be—interesting. The SuperMoon will be something to behold for believers in the power of moon—and for people watchers everywhere.

Copyright © March 2011 by L. S. Fisher
http://earlyonset.blogspot.com/

Nasal Spray Vaccine

2011-03-07T07:35:00.000-08:00

Those of us who have been following Alzheimer’s research have learned to listen to any news with optimistic caution. The latest research at Tel Aviv University shows promise for a nasal spray that will work on stroke as well as Alzheimer’s.

Is this a case of everything old is new again? When Jim first developed dementia, I read every piece of information I could about research. I checked out drug trials and tried to get him enrolled in an Alzheimer’s vaccine study. I remember reading that best way to introduce a vaccine into the brain was through nasal spray. No, I don’t remember exactly what year it was, but Jim was living at home so it must have been at least eleven years ago.

Don’t get me wrong, I’m excited about this study. Using animal models, researchers discovered that the drug introduced through nasal spray stimulated the body’s own immune system to repair brain damage caused by Alzheimer’s and strokes related to Alzheimer’s. The numbers being thrown around are that this research drug could help 80% of people with Alzheimer’s. This news would be more exciting if the drug was not so far from being available at the local pharmacy. In fact, the drug has not been used on humans.

Can this be the breakthrough to unlock the mystery of Alzheimer’s? I certainly hope it is. Just like the vaccine studies I tried to get Jim into more than a dozen years ago, this drug shows promise of reversing the damage caused by the disease.

Does anyone else find it a strange coincident that the acronym for the Tel Aviv University is TAU? It first caught my eye when I saw a report that began “TAU researchers develop a vaccine…” The hallmarks of Alzheimer’s are the plaques and tangles that form in the brain. Most research targets removing the beta-amyloid plaques. At first, I thought the statement meant these researchers were concentrating on the tangles which are made up of twisted fibers of tau.

With the woeful funding the USA provides for Alzheimer’s research, it is not surprising that the most exciting news to come along in several years was from Israel. The lack of funding for Alzheimer’s research means that many of the best and brightest USA researchers concentrate on better-funded studies.

Only time will tell whether the vaccine will be the long awaited Alzheimer’s cure, or whether it will be another disappointment to the millions who wait, and wait, and wait. What are they waiting for? They are waiting for that very first Alzheimer’s survivor.

No disease should be without hope. I know that I desperately searched for a ray of hope for the bleak prognosis Jim was given. Why have researchers found effective treatments for AIDS, many types of cancer, heart disease and other diseases, but come up empty with Alzheimer’s? A lot has to do with the priorities and a serious commitment to stopping a killer disease.

Alzheimer’s has a reputation of being a disease for the elderly, and we all know that no one is going to live forever. Early onset Alzheimer’s and related dementias affect people younger than age sixty-five—sometimes decades younger. Regardless of age, Alzheimer’s is a life-altering disease that requires a serious commitment to caregiving and palliative care that can stretch over twenty years.

Today, Alzheimer’s is a fatal, irreversible brain disease. The 5.3 million Americans with Alzheimer’s and 79 million boomers at risk should be encouraged by the TAU study. I believe that eventually a study is going to come along that can stop Alzheimer’s in its insidious tracks. Is it this one? Maybe, maybe not.

Alzheimer’s is a worldwide problem, and every country in the world, including the USA, should participate in finding a solution. At a time when our National Institute of Health funding is on the budget chopping block, we must insist that Alzheimer’s research move forward.

Copyright © March 2011 L. S. Fisher
http://earlyonset.blogspot.com

Change of Scenery

2011-02-28T09:21:00.000-08:00

Life can become so routine that a simple change of scenery can help us gain a new perspective. The change doesn’t have to be drastic; it can be subtle.

I usually work on my netbook in the living room. I have a desk that sits near the patio doors and it is an inspiring place to sit in the summertime. Or, I might use my lap desk and work from the comfort of my couch. This weekend, I decided to work in the kitchen, which has a view of the house next door (people watching), the road (car/tractor watching), a field (cow watching), and my sister-in-law’s bird feeders (bird watching). Geeze, it sure seems like I’m doing a lot of watching, doesn’t it?

So why would you care about my change of scenery? It makes a difference only as it applies to you. If you are a caregiver, a change of scenery is probably something you crave—like a tropical isle far away from your responsibilities. Doesn’t that sound good? Although it may sound like paradise, it most likely seems impossible.

Maybe a complete getaway isn’t on your possibility radar, whether it’s because of your responsibilities or an economic issue. What you can do is something a little simpler to provide a change of scenery. As a caregiver, you need respite. You need time to regroup and refresh so that you can continue to be a good caregiver.

Sometimes, just an afternoon getaway with friends and family, or to just have some alone time can give you a new perspective. A fresh view can revitalized your thinking and make you a better caregiver.

I visited with a caregiver who said she wanted to watch her dad so her mother could have some time away. She had offered, even pleaded with her mom, to let her help. Her mother insisted that she hire a caregiver, but couldn’t find one she trusted.

“What can we do?” the woman asked me. “She just won’t let us help, but I think she’s about to collapse.”

“Try a different angle,” I suggested. “Tell her you want to spend some alone time with your dad. Let her know this is something that would make you happy. Does he like to ride in the car?”

"Oh, yes,” she said. “He loves to go for drives.”

“Take him for a drive and stop at a park for a picnic. It will make him happier, and will give your mom some time to do something she likes to do.”

Had I talked to the mother, I would have encouraged her to take help when it is offered. If a caregiver keeps a list handy, it is easy to find something for family and friends to do. Do you need something from the grocery store? Would your neighbor like to mow the grass? People really do want to help, but they don’t know what to do.

If you are the person offering help to a caregiver, who don’t ever accept—look around to see how you can help. Can you help with some chores? Do you know of an activity that fits the interests of the person with dementia? Did he like to fish? Maybe you could take him fishing to give the caregiver a break. Did she like to cook? Bring the ingredients and make cookies together while you shoo the caregiver away.

I was healthy and in my forties when Jim developed dementia. Our children were grown and my employer allowed me some flexibility so that I was able to keep on working. I had a lot of family support from both Jim’s family and mine. When I needed to hire professionals, I used respite funds from my local Alzheimer’s Association chapter to help offset the expense.

At times, caregiver responsibilities were overwhelming for me, and I couldn’t even imagine how someone in his or her eighties could take care of a spouse. Alzheimer’s can last for years and too often the caregiver gives out before the person with dementia. This is especially true of the selfless caregiver who never takes a break. Being on duty 24/7 can break anyone, no matter how strong.

If you are a caregiver who never takes a break or enjoys a change of scenery from time to time, ask yourself this important question, “Who will take care of my loved one if my health fails?” In this situation, caregiving is all or nothing. If you do it all, you could very easily get to the point where you can’t do any of it. You are headed for a personal mental health crisis if you become mired down with responsibility and give up the activities you love. If you are in crisis, what good are you to your loved one who depends on you?

Copyright © Feb 2011 L. S. Fisher
http://earlyonset.blogspot.com

Backyard BBQ Beneath the Stars

2011-02-22T10:50:00.000-08:00

The thing about an almost 70 degree day in February, the barbeque grills come out from hiding. Football season may be over and there’s no excuse to tailgate, so we just tailgate in our own backyards.

This kind of day is a gift of a summer day in the dead of winter. Smoke drifts to the sky, the odor of hot and spicy, tangy sauce, sizzling hot meat, or grilled vegetables brings the scent of summer.

“It’s like a summer night,” I said.

“Yeah, except there aren’t any bugs,” my friend observed.

“I can’t argue with that,” I said. I walked to the edge of the deck to gaze up at the full moon and twinkling stars. “I’ve heard that city lights can keep people from seeing the stars.” As I stood there looking up at the sky, I thought about how seldom I take time to admire the beauty of a night sky.

With all the things that change in our lives, people coming and going, days filled with work, evenings filled with commitments, and nights that seem way too short for sleeping, the night sky remains unchanged. Some of the beauty twinkling above could have burned out a million years ago, but their light and essence can still be admired on a February night in 2011. Looking at the sky is like looking at history—theirs and mine.

The sky looks the same as it did when I was a child lying on one of my grandma’s quilts thrown on the front yard of my grandparent’s little house north of Stover. The sounds of music filled the air as my uncles played their guitars and sang country songs to blend with a backdrop of cicadas, bullfrogs and whippoorwills.

Those were simple days. As a child, I never knew the pain of loss or the taste of failure. I didn’t know what I didn’t know. I had never known anyone that had died. I guess I just thought we would live forever and the days of summer would stretch to the edges of the earth to infinity. Sickness, pain, and sorrow seemed as many light years away as a distant star.

When I drove home after the backyard barbeque, I turned up the volume on my XM Radio. My son had driven my car and left it on Channel 10 which plays old time country music. I was just considering turning it to a different channel but couldn’t resist listening to the Grand Ole Opry staring Hank Williams, Senior, not Junior. I just caught the very end of the show and listening to the hillbilly twang, reminded me of how everyone spoke when I was a child.

The program went back to other old time country music. One thing about country music—it’s usually tells a sad story or laments lost love. Too often the songs on Channel 10, are ones that Jim sang.

Merle Haggard sang the lyrics, “always wanting you, but never having you” and I had an ah-ha moment. Although I always assumed the song was about unrequited love, I suddenly realized it could be about lost love. How many of us know the empty ache of realization that we will never, ever be able to hold a loved one in our arms again?

We can feel that sense of loss when changes brought about by dementia have erased the person we knew. We feel the emptiness of knowing he is still there in some ways, but vanished in others. Jim’s music had always been such a part of him that when he lost his ability to play his guitar, we both lost a chunk of our lives. It was a change we didn’t want.

Maybe when too much has changed, we should look to the sky to remind ourselves that our lives are only a small speck compared to eternity. The sky looks the same to me as it did when I was a kid and looks the same as when my grandparents were kids. When everything changes around us, we need to take a deep breath of fresh air and take comfort in watching the same moon glide across the heavens and knowing that we can’t count the stars.

Copyright © February 2011 by L.S. Fisher
http://earlyonset.blogspot.com

February: The Longest Shortest Month

2011-02-12T10:37:00.000-08:00

According to the calendar, February is the shortest month. Based on my experience, I consider it to be the longest shortest month of the year.

There’s something about the winter that makes it easier to have a bad day, or even a bad week. Slick roads, snow piled to the sky, and frozen water pipes become the rule instead of the exception. I have a lot of company when I say that February has not been good for me.

Last weekend was great with some good family time. I started the workweek with my day off—sounds good so far doesn’t it? Everything was going great until I washed a load of clothes and the water backed up into the basement. I figured something was frozen up and the forecast was for a week of freezing weather.

The week went downhill from there. I was behind at work because of last week’s blizzard and to top it all off, computer programming glitches stalled my progress and our annual audit fractured my concentration. I spent a week battling a constant headache, nerves and depression. I was behind schedule and no matter how hard I struggled, I could not catch up. For the first time in thirty years, I didn’t meet my deadline.

Somewhere in the back of my mind I knew that my tough week was only a hiccup compared to the months and years of trying times when I was a primary caregiver. When I remembered February 2001, I felt like mentally slapping my own face for being so downhearted over the past week.

A decade ago, Jim had been kicked out of the nursing home and spent the entire month of February in a hospital for “regenerations” while we scrambled to find a new home for him. The hospital changed Jim’s medication and he was not doing well. Medicine that was supposed to level out his moods sent him into a constant state of agitation and he took his hostility out on anyone around him. My sons and I made the two hour (each way) trip nearly every day to check on him.

It was hard to convince the doctors that Jim wasn’t normally a violent person and that he had changed drastically since they had prescribed an antipsychotic drug. We knew that as long as Jim stalked the halls in a mean mood, we would never find a nursing home to take him. I even checked into “behavior units” and didn’t like what I saw at all.

I can honestly say that February 2001 was a bad, bad month. It was a time of uncertainty and constant worry that I wouldn’t be able to find a safe environment for Jim.

One day after a particularly harrowing outing, my oldest son and I insisted that the doctor take Jim off the antipsychotic drug. Jim steadily improved after the medication change and as February came to a close, a local nursing home gave him a second chance. It was months before I conquered my fear that some kind of incident would happen, and we would have to find another place for him.

After putting things in perspective, I realize that although the last week was challenging, it was not overwhelming in the scheme of things. Five days later, life is looking much better. My son fixed the drainage problem and today is supposed to be a balmy forty degrees. Snow is melting so fast I can hear it dripping off the roof. I’m back to my optimistic self and confident that everything is going to be okay.

I can surely conquer this month. After all, February is the shortest month and this year isn’t even a leap year. With Monday being Valentine’s Day, I’m pretty sure I’ll have enough chocolate to make it doable.

Copyright © L. S. Fisher, February 2011
http://earlyonset.blogspot.com/,

A Blizzard and Early Spring

2011-02-07T11:21:00.000-08:00

On Tuesday the blizzard brought the Midwest to a screeching halt. We were warned and most of us worked on our severe storm plans, but others remained clueless. When the blizzard came to town, businesses closed down and sent their workers scurrying to the shelter of their homes, or to the homes of family and friends to wait out the storm which surely would not be as bad as predicted.

Only it was, and then some. Instead of falling like a normal snow, the wind blew it sideways. And it snowed without respite through whiteout conditions, and before you know it, we had a real old-fashioned blizzard. It was certainly a good time to be indoors looking out the window at the snow that seemed to be on a mission. It was quickly dubbed Snow-maggaden, Snowpocalypse, and my personal favorite—Snownami.

After the blizzard raged all day and throughout most of the night, the world was covered with snow dunes. Ripples cascaded across yards and small objects collected drifts that stood several feet tall. The snowscape greeted the day with an in-your-face claim on the land. The world lay silent in awe of the volume of snow that dared snowplows to find the roads buried beneath its pristine covering.

Interstate 70 was closed from Kansas City to St. Louis, and the rest of the state’s roadways lay impassable. Snowplows plugged away at clearing main highways first. Other roads were cleared by farmers on their tractors. Even most state roads had tractor plowed single lanes, but no traffic during the morning hours because vehicles were snow covered lumps in driveways and alongside the roads.

People were snowed out, people were snowed in. It brought out the best of people with neighbors helping neighbors and the worst in people who couldn’t understand why stores were still closed in the aftermath.

Then began the slow, tedious process of digging out. Newspapers and television stations posted pictures of good Samarians wielding shovels and using tractors or trucks with blades to clear driveways and walks for others. By Friday, my country road had been cleared the width of a car. I was at work when I received the good news that my son, grandson, and a friend had spent hours clearing snow from my driveway and the walk to my door.

Locally, an elderly man died Friday when he got stuck on a side road and tried to walk home. His body was found in a snowdrift. Nationally, an eighty-eight year old Louisiana man with Alzheimer’s wandered from his home in search of the bathroom to change his clothes. His jeans and shirt were found outside the door, and a few hours later his body was discovered. Perhaps one of the most disturbing parts of the story is that although the man had been in a nursing home a few years ago, he seemed to get “better” and was moved back home. Inclement weather is dangerous for anyone, but for confused people it can be deadly.

Here we are a week later and snow is still piled up along driveways and roadways. The only bright spot in this entire scenario is that Punxsutawney Phil did not see his shadow which means an early spring.

I hope that Phil’s prediction isn’t just true for Pennsylvania since the sun was shining bright in Missouri the day after the blizzard—Ground Hogs Day, of course. Spring cannot be too early for me! I’m tired of the snow and the cold weather, but it seems like the snow and cold aren’t ready to move on just yet. The forecast is for more snow and cold this week before a warming trend next weekend.

The calendar, like life, has its seasons and some are more challenging than others. One thing that can be said for the blizzard, it reinforced how blessed I am to be surrounded by family and friends. Thanks to them, I’ve come through the snownami unscathed, although, I admit it wouldn’t hurt my feelings if another “fifty year storm” holds off for at least that long.

The Boomer Report: Grim Reading

2011-01-30T19:11:00.000-08:00

I woke up at 3 a.m. this morning with my mind spinning about another storm on the horizon, something important I should have done Friday, and my escalating To-Do List. Today should be a fun day for my sisters and me to celebrate Mom’s 84th birthday. My alarm was set for 7 a.m.—late enough to catch up on my sleep, but early enough to meet up with my family. I tossed and turned for about an hour and decided to just get up.

Might as well go for the middle of the night awakening whole heartedly, so I put on a pot of coffee and sat down to catch up on some reading. I read the latest Missouri Conservation Magazine cover-to-cover. Then, as the first streaks of dawn lit up the sky, I turned on my netbook to read the Alzheimer’s Association’s Boomer Report I had downloaded a few days ago.

As a longtime advocate, the information in the report was familiar to me. Each year we get an advocates guide that tells us that Alzheimer’s is the 6th leading cause of death, and that it is the only disease in the top 10 without prevention, treatment, or hope of a cure. As an advocate, I also knew that the government’s research investment in Alzheimer’s is $480 million per year compared to $3 billion for HIV/AIDS, $4 billion for heart disease and $6 billion for cancer.

This report is written for boomers. We boomers are the pragmatic generation that never wanted the truth sugarcoated. We grew up with the threat of nuclear annihilation and bought the records to make Barry McGuire’s “Eve of Destruction” a #1 Billboard hit.

It takes a lot to scare a boomer, but the title of this report—Generation Alzheimer’s: the defining disease of the baby boomers—seems pretty scary to me. I find the statistics alarming now, but when you see what they will become without a cure it offers up a bleak future to 10 million of us boomers.

Caring for a person with Alzheimer’s is exhausting, emotionally draining, and expensive. For every $100 the government spends on Alzheimer’s research, they spend $25,000 on care.

With the economy, $172 billion spent on caring for people with Alzheimer’s seems like a strain on the budget, but it comes breaking apart at the seams with a projected $1 trillion cost by 2050. A person with Alzheimer’s costs Medicare three times more and Medicaid six times more. Only 4% of 80-year-old Americans need long term care, but when a person of that age group has Alzheimer’s, 75% of them will require nursing home care.

Yes, I knew all the statistics so I’m not sure why I found the report so depressing today. Maybe it’s because as a boomer I know how we learned to overcome our fears and tended to think ourselves invincible. At least we always thought that maybe bad things happened to other people while we continue to cruise through life on a wish and a prayer.

Maybe my depression comes from the thought that although millions of us know how life changing Alzheimer’s is for the person with the disease and their family circle, we cannot motivate enough advocates to get an increase in research dollars. We boomers have made an impact on the world throughout our entire lives. We strained the education system, we flooded the job market, and now we threaten to bring on an economic and emotional crisis as we age.

Rather than being the generation defined by Alzheimer’s, we could be the generation that defeats Alzheimer’s. It isn’t going to happen through protest songs. It’s going to happen only if we have enough advocates to take up the banner and deliver the message to congress as often as it takes. We boomers need to take advantage of our numbers to brighten the future. We have to pool our stubbornness and stick-to-itiveness until we get the job done.

Copyright © Jan 2011 L. S. Fisher
http://earlyonset.blogspot.com

Jan’s Story: Embrace Life

2011-01-23T08:31:00.000-08:00

On this snowy Sunday morning, I sat in my pajamas watching the CBS News Sunday Morning when Barry Petersen began to tell Jan’s story. They showed archived clips of beautiful, vivacious Jan reporting the news both in the studio and on location. Now at fifty-five, Jan has advanced Alzheimer’s and lives in assisted living.

Jan’s speech is hesitant, and her words travel in a circular pattern of incomplete thoughts and repetitive phrases. She talks to the woman in the mirror and wants her to go to lunch with her. When she realizes the woman isn’t invited, she says goodbye to her and walks away.

Seeing the human story of Jan makes the statistics come to life. Approximately 250,000 families have a loved one with early onset Alzheimer’s. When the onset of the disease occurs before a person is sixty-five years old, it is considered early or younger onset.

Barry interviewed another woman with early onset Alzheimer’s. Pat, fifty-two, was diagnosed six years ago. “My time’s getting shorter,” she said. She is determined to enjoy life while she can. She is adamant that when she enters into the late stages she doesn’t want her beloved granddaughters to visit her. She wants to spare her grandchildren the heartbreak of visiting a grandmother who does not recognize them.

The disease changes family dynamics, and children and spouses begin to feel like parents to their loved ones. Caregivers learn the meaning of unconditional love when their loved ones become mired in a disease that erases memories of closest family members.

Barry explains why Jan’s story is so personal to him. He and Jan were married in 1985 while she was a reporter. “She embraced each new city as an adventure,” he said. Jan sits on the patio and when Barry arrives, she hugs him. They sit and Barry asks her about her husband. “I do love him,” Jan says in halting words. She continues to speak of her husband in third person not recognizing Barry as the husband she vaguely remembers. When Barry asks Jan for her husband’s name, she stammers and then pronounces that he is “Mr. Happy.”

Barry went through the steps of thousands of caregivers before him—he took care of his wife at home, then hired caregivers to help, and finally placed her in assisted living.

The story concludes with Barry introducing Mary Nell, a widow that has become his companion. Mary Nell knew a relationship with Barry encompassed a relationship with Jan and said she could not love Barry without loving Jan. They have become a family of three.

Jan was a person who loved life and lived it to the fullest. Barry has written Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s to honor the woman he has shared his life with, and who has been his life, for more than twenty-five years.

Barry realizes that many people will not understand his relationship with Mary Nell and how loving her does not diminish his love for Jan. “To embrace life, I must go on,” Barry said at the conclusion of the segment.

Copyright © Jan. 2011 L. S. Fisher
http://earlyonset.blogspot.com/

Memory Care: Welcome to the Neighborhood

2011-01-18T20:20:00.000-08:00

One of the hardest decisions a caregiver will ever have to make is when to seek professional care for a loved one. The next big decision is where to find that care and what options are available. The only way to decide which option is best for you is to tour the available facilities and get a feel for how well your loved one will fit into the environment.

I remember taking those tours. It was pretty much like interviewing for a job I didn’t want. It was much easier to see what was wrong rather than what was right. Even places that had good recommendations didn’t fare well under my jaded examination.

When I found places I thought might be acceptable, I put Jim on a waiting list. In 1999, Sylvia G. Thompson Residential Center was considering a new concept in Alzheimer’s care based on small groups of residents in a homelike setting. I looked at the plans and put Jim on that waiting list too. It so happened that the timing wasn’t right for the proposed unit at Sylvia G. Thompson and their project would be on hold for another decade.

Thursday night I went to an open house for the Memory Care unit at Sylvia G. Thompson Residence Center and the finished product is stunning. An atrium, complete with a sky-lights in a high ceiling, is the centerpiece of the Memory Care wing. The indoor gardens have water features and an abundance of plants that include an orange tree, a pea bush, and lush greenery to give the area an outdoor feeling. The walking track eclipses the atrium and is designed to give a wandering resident plenty of room to stretch his or her legs.

Wicker furniture is arranged in a separate sun porch area. On the night of the open house the view from the large windows looked like a scene from a winter wonderland.

Between the gardens comfortable arm chairs await those who just want to sit and relax. Tables are set up with games—checkers, dominos, and a jigsaw puzzle. The four corners are staked out as separate neighborhoods. Five residents will have their homes in each neighborhood. These five neighbors will live in rooms surrounding their living area, kitchen and dining room. The table seats six because a caregiver will be assigned to each neighborhood and will eat with the residents.

The common areas are decorated with photography by Faith Bemiss, a local artist. Her beautiful photographs serve practical function by helping residents find their rooms. A resident might live in the pelican room—a small framed photograph of pelicans is beside the door and a larger pelican picture decorates the room. Each of the twenty rooms has a different photographical theme.

We may not be able to find a home with all the features of Memory Care at Sylvia G. Thompson, but we can choose a home that meets our loved ones needs at the time. As the disease progresses, those needs may change. In our case, Jim was in the first home for less than a year. Then, we found a long-term care facility in our hometown which made it easier for me to see him each day. We decorated Jim’s room with NASCAR and Kansas City Chief’s posters and bedspreads to reflect his interests. Jim lived at the second home for a little over four years until his death in 2005.

Jim was in an Alzheimer’s unit at both facilities. Both of these units became his home and his neighborhood while he was living there. I remember one stay in the hospital, Jim told me he wanted to “go home.” Since Jim was mostly silent, I knew he was good and tired of being in an unfamiliar place. When he was dismissed I took him back to the Alzheimer’s unit. He was satisfied to be on familiar turf, and to be back in his own neighborhood.

Copyright © Jan. 2011, L. S. Fisher
http://earlyonset.blogspot.com/

President Signs National Alzheimer’s Project Act

2011-01-09T09:45:00.000-08:00

Alzheimer’s Advocates have cause to celebrate with the presidential endorsement of the National Alzheimer’s Project Act (NAPA). Why is this Act so important and why have advocates put so much effort into a national coordinated effort to staunch the Alzheimer’s tsunami headed our way?

Aging baby boomers. Age is the No. 1 risk factor of Alzheimer’s and statically speaking the aging baby boomers drastically increase those at risk for Alzheimer’s. For the next 19 years, Boomers turn 65 at the rate of 10,000 per day! By 2050 the care cost of Americans with Alzheimer’s will skyrocket from the current $172 billion to $1 trillion.

What is the purpose of NAPA? According to my 2010 Alzheimer’s Action Summit Advocate’s Guide, NAPA will—

• Launch a campaign within the federal government to overcome Alzheimer’s disease.

• Establish an inter-agency Advocacy Council to create a coordinated National Alzheimer’s Disease Plan

• Comprehensively address the federal government’s efforts on Alzheimer’s research, care, institutional services, and home- and community-based programs.

• Accelerate the development of treatments that would prevent, halt or reverse the course of Alzheimer’s disease.

• Decrease health disparities by ensuring ethnic and racial populations at higher risk for Alzheimer’s receive much-needed care and services

In a time when we worry about the national debt, finding effective treatment or a cure for Alzheimer’s disease is more important than ever. For each person with Alzheimer’s, Medicaid costs are 9 times higher and Medicare payments are 3 times higher.

I have been an advocate for more than a decade. I don’t suppose I would have ever bothered to put so much time, effort, money, and passion into such a cause if I hadn’t personally seen the destruction caused by dementia. When Jim was diagnosed with an Alzheimer’s type of dementia, it changed both our lives, and the lives of our extended family and network of friends. Living with dementia is something our minds cannot comprehend if we don’t have that personal involvement.

The thought of having a 50/50 chance of developing Alzheimer’s for those who live to be 85 should be cause for concern for anyone who hopes to live a long, healthy life. Other rarer types of dementia show up in much younger people. Jim was 49 when he developed corticobasal degeneration. Younger people develop frontotemporal dementia and can develop Alzheimer’s, especially the hereditary form.

Alzheimer’s should concern all of us. It’s not just a disease of the elderly that involves some forgetfulness. It’s not a joke for late-night TV. It is a devastating, fatal brain disorder that is financially and emotionally draining for the entire family. It is a time of ongoing loss and sadness and a disease I wouldn’t wish on my worst enemy.

NAPA means this country has finally recognized that Alzheimer’s needs aggressive action tempered by a comprehensive plan. Unless we use adequate resources to find a cure for Alzheimer’s, we face our future with trepidation.

The Alzheimer’s Association credits 300,000 advocates for passing NAPA. More than five million Americans have Alzheimer’s. Think how much more progress we could make if each person with Alzheimer’s had one family member who became an advocate. If that were the case, the tsunami would be millions of people concentrating their efforts on finding a cure for Alzheimer’s now, not at some unforeseeable time in the future.

Copyright Jan. 2011, L. S. Fisher
http://earlyonset.blogspot.com/
sources: www.alz.org
Alzheimer’s Action Summit 2010 “My Experience, Our Voice” Advocate’s Guide

Reflections, or Through the Looking Glass?

2010-12-31T10:58:00.000-08:00

The year end and the New Year are like a two-sided mirror, and I stand in front of it. In one side I see my own reflection, to see the other side I have to step through the looking glass. The decision is mine, do I continue to look at a reflection of the familiar, or take a leap of faith and step through to a new world?

What’s on the other side? Maybe it is just more of the same, but it could be a strange new world where nothing is familiar. It could mean that someone raised the stakes when I wasn’t looking, or it could be a wondrous land unlike anything I’ve ever known. Either way, through the looking glass means excitement and adventure—the reflection is security and safety.

But does the mirror reflect only the familiar? I’m reminded of an exercise in my Train the Trainer: Building Creative Caregivers workbook. The "Mirror Exercise" is designed to sensitize participants to how hard it is for a person with dementia do perform simple tasks.
The Mirror Exercise (from Building Creative Caregivers):

• You need a hand mirror, pen and paper
• Hold the pen in one hand and the mirror in the other, reflecting side out slightly above your shoulder
• Locate your hand and pen in the mirror
• Looking only in the mirror, draw a house on the paper
• After you draw your picture write your name on the paper

Try the exercise and you learn that sometimes you are in unfamiliar territory even when you don’t take a chance. The reflection may not be as safe as stepping through the looking glass.

Life changes and evolves every day. Sometimes the changes are internal as we struggle with meeting our daily emotional needs. We face external changes as we wake up each day to find our world has changed. Sometimes the changes are upheavals—the test results came back positive, a loved one passes away, a home is destroyed by fire or tornado; while other changes are subtle—another gray hair, bad dreams, indigestion, gained another two pounds.

The only thing we can really count on is that today will not be exactly like yesterday or the same as tomorrow. We cannot stand still while everything moves around us. Instead, we are swept along life’s journey at breakneck speed.

So back to the original question—look at the reflection or step through the looking glass? Maybe it doesn’t make any difference. It depends on what we see in the reflection and whether we can look at it from a little different perspective to keep it interesting.

If I step through the looking glass, the world may change drastically—for better or worse. If my choice is through the looking glass, I must be sure the entire goal is not to find my way back. This choice doesn’t have to be made on New Year’s Day, it needs to be made when the time is right. I’ve stepped through the looking glass before, and when I can do it without regrets, I’ll step through it again. For now, I’m happy looking at the reflection in a different way. That’s enough excitement and adventure for me.

Copyright © December 2010 L. S. Fisher
http://earlyonset.blogspot.com

The Day After Christmas

2010-12-26T09:57:00.000-08:00

Ever thought about how the day after Christmas is so different from the night before our biggest holiday? Before is filled with anticipation, excitement, and preparation. The day after is clean up the mess time, work on leftovers, procrastinate about undecking the halls (sounds like a New Year’s Day project), and maybe a twinge of depression that the big day is over.

This year, the day after fell on Sunday, so the normal “day after” seems to me like it’s on overdrive. The house is quiet—holiday music seems so “yesterday” and I just couldn’t Face the Nation this morning. Why would anyone want to hear that squabbling on the day after Christmas?

Overnight, more snow fell—okay, we already had a white Christmas so I’m ready for it to stop. I decided to stay home instead of braving the slick roads to go to church this morning. Instead, I watched Joel Osteen on TV.

Joel’s message this morning, “Enjoy the Journey,” really hit home with me. The gist of his message was how we get too busy to enjoy the simple things in life. He talked about how we rush through life in anticipation of the big events and don’t have time to savor the small moments that make the memories. We need to squeeze time in our busy schedules to spend with family and loved ones, instead of zapping our energy with work and obligations.

I guess if a busy man like Joel Osteen can take time to savor the moment, it should be easy for me. When I examine my life, it seems to be mostly hectic, and too often hectic turns to frantic. I’ve just kept piling on obligations until they’ve taken on a life of their own. For the past week, I haven’t worried about all the things I should be doing, but have pretty much just shoved them aside. For once, my holiday has been respite from responsibilities.

Holidays were especially hard during the ten years of Jim’s dementia. Christmas activities pretty much confused him and he didn’t like the house being changed with decorations. When he was in the nursing home, he enjoyed the small Christmas tree I put in his room.

Each year is different in some way. If nothing else, the kids or grandkids are getting older. After our family get-together this year, my oldest grandson got behind the wheel of the family vehicle to drive them home. It doesn’t seem that long ago that we bought him Woody and Buzz Lightyear for Christmas.

While some really relate to the ho-ho-ho and jolly part of Christmas, others are filled with dread as they struggle to establish new traditions, or wonder how they will put on a happy face for everyone else. There’s a lot of internal and external pressure to be merry at Christmas. It’s expected.

As far as Christmas, I think I’ll just go with Joel Osteen’s idea to “Enjoy the Journey.” Each Christmas is different, but that doesn’t mean it is necessarily better or worse. The Christmases that may have seemed the most challenging at the time yield happy moments that turn into cherished memories. I can still see Jim wearing his Kansas City Chief’s shirt, mesmerized by the fiber optic tree. When I walked into his room, sometimes he would turn to me and his eyes would light up.

Life’s journey seems to be flying by and Christmas is a mile marker. Christmas is over, again. Now, it’s time to think about how to make the most of the 365 days of 2011. No one but me can put the “happy” in my New Year, but I might as well start with this day after Christmas. No time like the present to make a memory.

Copyright © December 2010 by L. S. Fisher
http://earlyonset.blogspot.com

A Letter to the President: Sign the National Alzheimer’s Project Act

2010-12-20T12:53:00.000-08:00

For the first time, I wrote a letter to the President of the United States! I asked him to sign the National Alzheimer’s Project Act (NAPA). It’s not that I never had anything to say to the President before, but no issue ever motivated me enough to actually write. Besides, you always know he isn’t going to read his letters anyway. I’m sure he isn’t too concerned about one person’s opinion, but if he gets a million emails sent to him, they will be a nudge in the right direction.

This Act has been in the works since 2007. During our legislative visits at the 2010 Alzheimer’s Advocacy Forum my granddaughter, my friend Cindy, and I talked to our representatives and senators to ask them to support NAPA. After 1,000 advocate meetings, 50,000 emails, 10,000 phone calls, and 110,000 signatures gathered during the Alzheimer’s Breakthrough Ride, both the Senate and House of Representatives passed the bill establishing NAPA.

NAPA will be a coordinated effort to use our resources on research for a cure and effective treatment, provide appropriate home, clinical, and institutional care for the 5.3 million persons with Alzheimer’s, improve community based programs, and support for families. In my opinion, NAPA is the most important legislative act for families who are struggling with an Alzheimer’s diagnosis.

After a series of tests, a doctor told my forty-nine-year-old husband that he had early-onset dementia.

“What would cause that?” I asked.

"Most likely Alzheimer’s,” the doctor said.

We didn’t know much about Alzheimer’s at the time, but I can tell you from personal experience that it is a devastating diagnosis. There are no words to describe the heartbreak of knowing your loved one has an incurable brain disease that will rob him of his abilities, personality, memories, and eventually his life.

By 2050, without a cure for Alzheimer’s, an estimated 16 million Americans can hear the same bleak diagnosis. Age is the No. 1 risk factor for Alzheimer’s and as the Baby Boomers age, more people will be at risk than ever. NAPA does not guarantee a cure, but it is definitely a step in the right direction. Alzheimer’s has never received the attention of diseases like AIDS or cancer. What good will it do to cure other diseases to find ourselves at a 50% chance of developing Alzheimer’s once we reach 85 years old? I don’t know about you, but I hope to be able to recognize my children, grandchildren, and great-grandchildren as long as I live.

Jim died in 2005 at fifty-nine years old after ten years with corticobasal degeneration, an Alzheimer’s type of dementia. Today would have been our 41st wedding anniversary had dementia not cut his life short.

I wrote my letter to the President because of Jim, and I’m sure your loved ones are worth the few minutes it takes to go to www.alz.org and send a letter to the President in support of NAPA.

Copyright © December 2010, L. S. Fisher
http://earlyonset.blogspot.com

The Big Chill: Keeping Loved Ones Safe

2010-12-14T19:27:00.000-08:00

Winter hasn’t officially begun and I’m already tired of the frigid weather. Single digits and thirty-mile-an-hour winds make me want to burrow in and not make an appearance until springtime.

I started out bundled up in my winter coat and wearing a hat on a mission to finish my Christmas shopping. After a few miserable trips from car to store, I purchased a heavy sweatshirt and put it on beneath my coat. I pulled the hood up and spent the rest of the day with hair that was crushed to my head in places while static lifted the rest of it in wisps high above my head. Not a good hair day!

Hair is not the biggest challenge on a cold, windy winter day. The danger lies in being exposed to the elements for any length of time—especially without protective clothing.

Winter is especially dangerous when a family member has Alzheimer’s. A person with Alzheimer’s may not remember to dress appropriately for the weather and a trip across the yard to check the mail could turn into a tragedy.

About 60% of those with Alzheimer’s wander. Wandering is especially dangerous in inclement weather when every minute counts. Snow can change the look of the terrain and familiar surroundings may become unrecognizable to someone with dementia. Slippery sidewalks and snow filled ditches become an obstacle course fraught with danger.

In the early stages, Jim walked our two big dogs every day. One day, a neighbor became concerned about Jim when she saw him trudging through a deep snow walking the dogs. He was wearing his winter coat, but had neglected to zip it up. She met him at the end of her drive and convinced him to turn around and head toward home.

After Jim began to wander, I tried different types of safeguards. I tried a device on the doorknobs that made them hard to open, but they didn’t slow Jim down when he decided to open the door. Eventually, I installed an alarm on the door so he couldn’t go outside undetected. I registered Jim with Safe Return which gave me some peace of mind.

When a person is lost, it is critical to find him within the first 24 hours to increase the chances of having a good outcome. In cold winter weather, like we have now, the safety zone is further reduced.

Cold weather is dangerous for everyone, but when reasoning is impaired it is important for family members to be vigilant. If your loved one must go outside, make sure he or she is dressed warmly and limit outdoor activities to short period of times. Do not let a person with dementia go outside alone in inclement weather especially if they have been known to get lost.

Winter officially begins next week so we have plenty of time to experience the big chill. Let’s keep our loved ones warm and safe throughout the cold days ahead.

Copyright © December 2010 L. S. Fisher
http://earlyonset.blogspot.com/

Frontotemporal Dementia (FTD)

2010-12-06T19:36:00.000-08:00

I found an Alzheimer’s Weekly in my inbox that gave me hope that scientists may be on track to find effective treatment for the rare type of dementia Jim had. While Jim was living, we didn’t know exactly what disease he had, only that it was an Alzheimer’s type of dementia. Early on, the neurologist suspected Jim might have Pick’s disease, or a disease that didn’t even have a name.

When the autopsy report came in, I sent it to the neurologist to find out exactly what disease Jim had. All I knew for sure after reading the report was that Jim had no evidence of Alzheimer’s. The neurologist called me back in a few minutes and gave me the name of a disease I had never heard of: corticobasal degeneration, sometimes called corticobasal ganglionic degeneration.

The 7th Annual International Conference on Frontotemporal Dementia focused on a disease that so rare it affects only about 20,000 people.

Frontotemporal Dementia Facts:

Accounts for 2 – 10% of dementia
The onset is usually between 40 and 65 years of age
The expected lifespan is 5-10 years
Can run in families
Familial FTD is linked to the “tau” gene, chromosome 17

The Frontotemporal Family of diseases affects behavior and causes problems with language. Jim developed dementia at 49 years old and died at 59. His personality changed and his behavior became childlike at time. One of Jim’s first symptoms was problems with language—spoken and written. Jim could write letters and sometimes even have the correct letters in a word, but they might be jumbled. I had him write a grocery list for me once and he wrote “taper powels.” He later looked at the list and said, “Why did I write it like that?” He spoke in familiar phrases for a long time and was almost totally silent the last two years of his life.

The FTD diseases include:

Pick’s Disease
Primary Progressive Aphasia
Semantic Dementia

Some doctors propose adding other diseases to the FTD classification and call the group Pick’s Complex. The diseases that may soon be included in FTD beneath the umbrella of Pick’s Complex are corticobasal degeneration and progressive supranuclear palsy.

I’ve never understood why corticobasal degeneration was not included in the various Alzheimer’s type of dementia. Jim's diagnosis after the mental exam was “dementia of the Alzheimer’s type.” And corticobasal is definitely that.

One of the differences between FTD and Alzheimer’s is that FTD usually begins with behavior and communication problems, where Alzheimer’s begins with memory loss.

FTD Symptoms:

Personality and behavior changes
Lack of empathy and impaired social interactions
Language difficulty
Compulsive behavior and repetitive actions
As the disease progresses—impaired motor skills, speech, and movement

Corticobasal degeneration is considered a movement disorder. Late in the disease, Jim kept falling and used a device that looked much like a giant baby walker to keep him in an upright position. He also had what is known as “alien limb” and didn’t seem to know what to do with his right arm. He clinched his right hand so hard for so long that he developed a pressure sore and had to have his little finger amputated.

People with FTD cannot stop or control their behavior—the frontal and temporal lobes are the first part of the brain to sustain damaged. Since FTD is typically a younger onset dementia it is often mistaken for a mental disease rather than a degenerative brain disorder. Out of control behavior, personality changes, and poor financial judgment are some of the symptoms that create strained relationships with loved ones. Caregivers are only human and although logically we know our loved one is not deliberately being difficult, sometimes feelings are hurt, or the caregiver feels unappreciated, unloved, and becomes depressed.

My experience is that it is best to take one day at a time—or even one hour at a time. I accepted Jim for the person he became, knowing that he would never again be the man he had been. It helps to know that some of the behavior can be controlled with medication and from time-to-time you see a fleeting glimpse of a familiar expression, or a genuine smile.

I always cherished the moments when I said, “I love you” and Jim replied, “I love you too”--especially, when he said it like he meant it.

To read more about frontotemporal dementia:

http://alzheimersweekly.com/content/frontotemporal-dementia-2010-roundup

http://www.nia.nih.gov/NR/rdonlyres/97ABF1CB-8913-4877-B816-F35CAF126837/0/conv09n4.pdf

The Brighter the Light, the Deeper the Shadows

2010-11-28T11:13:00.000-08:00

This morning Pastor Jim talked about how God’s light chases away the darkness, and as usual, his message gave me food for thought. In a flash of light, the phrase came to my mind—the brighter the light, the deeper the shadows.

Our lives are made up of bright light and dark shadows. Some mornings we awaken with joy in our hearts, confident the day will shine bright upon us. Other days begin with a sense of something out of kilter, and as we orient ourselves to meet the day, a shadow may envelop us in gloom.

People surrounded by the brightest lights often plummet to the deepest shadows. Do we expect more from those who live in the limelight? Stars who flame the brightest fall from the sky and become lost in the shadows. Often we are envious of famous people and believe they lead charmed lives. Often it isn’t until their deaths that we learn about their dark sides, the demons of drugs, insecurity, or physical abuse they hid behind their bright smiles. Could we have seen the pain in their eyes if only we had looked closer? Could we tell that Marilyn stood in the shadow of Norma Jean? Could we have known that satisfying the public’s insatiable curiosity about Princess Diana cast a shadow over her that contributed to her death?

When a loved one has Alzheimer’s, we may spend many days living in the shadow of the life we used to have. I recently talked to a woman whose husband has a type of dementia that drastically changed his personality. For more than sixty years, their days were filled with travel, love, and laughter. Now, he is making her life miserable. He accuses her of cheating on him, calls her obscene names, says he hates her (and always has), that he wants a divorce, and on and on. Her heart is broken. She doesn’t want to put him in a nursing home, and she worries about him constantly even during the time we spent drinking coffee at a local restaurant.

Now, his doctor is trying to control his rage with medication, but so far nothing has worked. “I still love him,” she said with tears in her eyes, “but I don’t like him anymore.” Her life has moved into deepest shadows. The bright light that shone upon them seems like a distant memory, a lifetime ago, extinguished and vanished from her world.

If we can only remember that during the darkest times of our lives, the brightest light shines on us. The light is always there. It just happens to be shining at our backs while all we see is the shadow in front of us. As we move forward, the shadow moves with us, and we think it will never go away. During the most troubled times, we may be afraid that the shadow is a black hole and one more step will cause us to tumble into the abyss. From time to time, we must turn around and look over our shoulder to see the bright light, still there, steadfast.

Without light, there are no shadows. Do you remember making shadow puppets when you were younger? You place your hand in front of a bright light and form your hand into a shape. Your hand displaces the light, making a fun shadow on the wall. If you make a solid fist, the light won’t shine through your hand—you must actively make it happen.

The only way a shadow remains solid is if we do nothing to allow light to shine through. The slivers of brilliant light blazing through the shadows reaffirms our faith that the deeper the shadows, the brighter the light.

Copyright © November 2010 L. S. Fisher
http://earlyonset.blogspot.com

Early Onset Blog Book Wins Book of the Year Award

2010-11-22T08:31:00.000-08:00

I went to the Ozarks Writers League (OWL) Awards banquet hoping, but not expecting, to win an award for my contest entries. After winning third place in the Gene Andereck short story contest, and third in the Dan Saults essay contest, I felt good about the recognition. Sixty-six of OWL’s 263 accomplished authors submitted more than 200 entries in nine categories, and though I was elated to win, I calmly walked forward to receive my checks and certificates.

One of the last awards was for the Book of the Year. When President Delois called out my name and announced that Early Onset Blog: Essays from an Online Journal was the Best Book of the Year Award winner, I hopped and skipped toward the front to accept. I bounded forward propelled by a mixture of excitement and the urge to get to the front of the room before they changed their minds.

The blog book didn’t win Book of the Year because it has an outstanding plot or colorful fiction characters. The characters are real people, with fear, anxiety, hope, and humor weaving us together as we share the bond of life with dementia. My blog isn’t flowery prose or a literary masterpiece. Each idea, phrase, or observation comes from my heart or it doesn’t hit the page.

For the past five years, I’ve wanted to write a memoir about Jim’s life. Although, I’ve never pared down my copious journal, I have shared many of my memories through the blog. The blog has become a memoir of our ten-year journey through dementia. Our story is the thread that binds the essays together that make up two books: Essays from an Online Journal and The Friendship Connection. Now, the third book is almost finished.

The books are not bestsellers, and were never intended to be. I give them to legislators during our Capitol Hill visits at the Advocacy Forum in Washington, DC. I hand them out during Memory Day at the state capital. Then, I distribute them free of charge at our Sedalia Memory Walk. The worth of the books is not based on sales, and the rewards I receive are not monetary. I am more like the old time vendors who receive something of value in exchange. No, please don’t send me a chicken or side of beef—my rewards are finding out I wrote something that helped or encouraged you. I prefer emails, comments, or a hug when we meet in person.

Readers have many different views of bloggers and bloggers have different goals, or agendas. My goals are simple: Encourage, Inspire, and Inform. I know how alone a caregiver can feel, and I understand those middle-of-the-night moments when you need to be encouraged. No matter how much family, friend, or church support you have, your inner strength occasionally needs to be shored up. You need to be reminded that the days may be dark, but moments of joy will break through the clouds, and you will once again walk in sunshine.

I don’t write this blog to win awards. Yes, it is great to be recognized and it validates the time and effort to keep on writing even when I get no comments or emails. I can look at the stats and know hundreds read the blog on a regular basis. My writing comes from a passion of knowing how alone a caregiver can feel.

When I lose my passion, I’ll close this blog down. Until that day, if it ever comes, I’ll keep on encouraging, inspiring, and informing. Simple, but important goals, as long as Alzheimer’s erases memories, erodes skills, and reduces our abundance of life.

___________

Early Onset Blog: Essays from an Online Journal and Early Onset Blog: The Friendship Connection are both available at http://www.amazon.com/ when you type in "Early Onset Blog."

Copyright © November 2010 L. S. Fisher
http://earlyonset.blogspot.com

The Journey Ends: Memories of Lynne

2010-11-14T20:03:00.000-08:00

My son saw the obituary before I did. “Was that your friend with Alzheimer’s in the obituaries today?” I hadn’t read the paper yet but when he told me the name, I said “Yes, that was her.”

The last time I saw Lynne, I didn’t recognize her. She bore small resemblance to the vivacious woman that had become my friend. Yes, she had dementia when I met her; in fact, it was the reason I met her.

The Alzheimer’s Association had started a group for early-onset Alzheimer’s. The group met in Columbia, and I had decided to take Jim. Joetta from the Mid-Missouri Chapter asked me if I would mind bringing a lady with early onset that lived in Sedalia. I agreed to go by and pick up Lynne so she could participate in the group.

From my journal—Meeting Lynne and becoming friends:

The first group meeting was set. I loaded Jim into the back seat of my Nissan Sentra and drove to the apartment building where Lynne lived. She saw us drive up and immediately came outside. Lynn was an attractive, quiet woman with a fair complexion, and neatly groomed.

We introduced ourselves, and she settled into the front seat for the hour long drive to support group. We instantly hit it off. As we drove toward Columbia, Lynne and I chatted easily about clothes, movies, and our dogs. Lynne told me that she wished she had a man to be romantically involved with. She said she really enjoyed male company, but had no one in her life now.

We stopped at the rest area so that everyone could use the restroom, and then headed onto our group meeting. Other than Lynne, Jim, and I, one other couple attended the meeting. They lived in Columbia, and Stan was in a much earlier stage of the disease than Jim. Stan was articulate and he spoke about the frustration of not being able to do the things he used to do, the stigma of losing his job, and his fear of what the future held both him and his wife.

Jim’s communication abilities were already severely impaired and he nodded agreement while the other man talked. He mumbled “yes” several times. The facilitator tried to draw Jim into the conversation.

“He said it,” Jim finally stammered, tears running down his cheeks.

After we left the meeting, Lynne told me that she couldn’t tell anything was wrong with the other participant. I could hear a certain hesitation in Stan’s speech when he talked, and noticed a dependence on his wife to help him when he became confused.

I took Lynne and Jim to lunch at Jim’s favorite place, Steak and Shake. Lynne wanted to buy our lunch, but I bought her lunch the first time. She insisted her sister had given her money to buy lunch, so I agreed that she could pay next time.

The next month during the drive to the support group meeting, Lynn told me Jim scared her.

“Why?” I asked, because Jim was easy to get along with at this stage.

“It scares me to think I will be like that,” she said.

Jim was sitting in the back seat wearing a jacket covered with pins, a cap pulled down low, dark sunglasses on, and earphones on so he could play his cassettes. When the tapes clicked at the end, he handed it to me to change the tape. Lynn changed them since I was driving.

“Lynne, every person is different. The medicine seems to help you and it never helped Jim.”

“That makes me feel better,” she said.

Each time I took her home, I gave her a hug.

I admired Lynn’s awareness of her disease. She willingly gave up her driver’s license because she no longer trusted her driving. She made the decision to go into assisted living when she could no longer remember if she had taken her medication. “Alzheimer’s is a terrible disease,” Lynne said, “but in some ways it has been a real blessing. I now have more friends than I ever had in my life, and I met these wonderful people because of my disease.”

Wow! How do you respond when someone says something like that?

Lynne and I shared a love for movies and we went to several together. We saw Anna and the King and we both enjoyed the movie and the beautiful costumes.

Now, Lynne is gone and a few lines in the paper mark her passing, but don’t do justice to the warm, loving person she was. Her journey has ended, but I will always remember the way her face lit up with the joy of life.

Copyright © November 2010 L. S. Fisher
http://earlyonset.blogspot.com

A Pac-Man Kind of Morning

2010-11-07T10:33:00.000-08:00

Sunday morning I awoke to a sound that catapulted me into a déjà vu moment: Mario Karts. The Super Nintendo belonged to Jim and Mario Karts was his favorite game to play. My youngest son was sitting on the floor in front of the TV showing his three-year-old how to play.

“Put this game in, Daddy,” my grandson said.

So Rob popped in a different Mario game. While Rob played the game, my grandson was looking at the pictures on the other games. “Oh, put the pirate game in!”

“That’s actually Donkey Kong on a Pirate Ship.” But Rob put it in and started it up. Within a few minutes, that game was forgotten when another game pak caught my grandson’s attention.

“Play Race Cars,” was soon followed with, “Football!” My grandson happily pushed buttons on the football game and got all excited when he heard “First down!” It didn’t matter if it was his team or the other, he felt like he was part of the game.

“These games are pretty primitive,” Rob said. Compared to the realistic new games, they are indeed.

Rob picked up Ms. Pac-Man and started it. My seven-year-old granddaughter decided to play. She quickly caught on and alternately ran from the ghosts until Ms. Pac-Man gobbled a power pack and then she chased them.

“The Christmas we got the Pac-Man game we stayed up all night playing it,” I said.

“That was on the Atari,” Rob said. “It had a joy stick.”

I couldn’t remember what the old players were called and Rob reminded me that our first player was an Odyssey. “You played Pong on it by twisting dials,” he said.

The video games were never my thing, but Jim and our sons played many spirited games. They were competitive with each other and with their individual high scores.

My granddaughter became discouraged when she couldn’t clear the Ms. Pac-Man screen. “Try to beat your own score,” Rob told her.

It was the smaller score to the left of the high score still recorded from long ago. I don’t know whether the score was Jim’s or one of the kid’s. “I bet I could beat that high score in one game,” Rob said. Soon he had the first screen cleared and moved to the next level. It wasn’t long before a new high score replaced the old one.

What else could you expect from the son of the Game Master? Jim played for many years after he developed dementia. Some of the caregivers I hired to watch him while I worked played games with him. Jim was still a formidable player.

Jim passed down his love of playing games to our sons, and they, in turn, passed it on to our grandchildren. The game sounds brought back memories and I could feel Jim’s presence and imagine his big smile and laughter at small hands on the same game controls he had held so many times. Jim would have loved to see his son and grandchildren play the games he used to play.

This morning was a glimpse of what might have been but never was. Just another example of how each day dawns a little differently, and each sun sets a little askew.

Copyright © November 2010 L. S. Fisher
http://earlyonset.blogspot.com

Eating Out

2010-11-03T20:08:00.000-07:00

I like to eat out and looked forward to eating out in a really nice restaurant in Kansas City this past weekend. It was Halloween and we were led to our seats by a soccer player. The waitress, a biker babe, took my order for a pork chop smothered in cheese, mushrooms, and sautéed onions.

When the pork chop arrived, it looked and smelled delicious. Then I cut into it and took a bite. It didn’t taste done and when I looked closer, I noticed the meat was pink. It is rare for me to complain, but when the waitress checked back to see how everything tasted, I said, “My pork chop isn’t done.”

“I’m sorry. I’ll get you another one,” she said.

In about ten minutes, a man dressed as a referee brought me another pork chop.

“How does it look?” he asked. Well, now, the other pork chop looked fine, but it wasn’t done.

“Yeah,” I said. “It looks fine.”

“What didn’t you like about the other pork chop?” he asked.

“It wasn’t done,” I said.

“It wasn’t done? They told us you said it was ugly.”

“Ugly? I never said that.”

He laughed. “Well I had never heard that one before, and we’ve been talking about it in the kitchen for the past ten minutes trying to figure out why the pork chop was ugly.”

We all had a good laugh. I think he was relieved that I hadn’t watched so many Food Network shows that I thought plating was the most important thing about the meal.

Later as I chuckled about the incident at the restaurant, I thought about some of the times Jim and I ate out and his dementia made it a challenge.

Jim liked to eat at certain restaurants, but he especially liked the food bar at Ryans. It became more difficult for Jim to make his selections. He would put gravy on his plate with the mashed potatoes on top. Eventually, we began to order off the menu. Jim loved steak, so I would order it for him. He always wanted tea to drink and he would mix several packets of sweetener in, stir, turn the glass up and drink it without stopping. The waitress would bring him another and he would repeat the process. Jim usually drank about four glasses before the meal came. He would give his steak a puzzled look. He didn’t seem to know what to do with the food. After I cut up the steak, he would pick up his fork and eat it.

Jim liked to eat at Eddie’s, a local drive-in turned diner. It is a place with lots of tradition and classic food. Jim’s favorite was the chili. One night we were leaving Eddie’s and Jim casually picked up some change from a table.

“Hey, give that back,” I said. “That’s her tip.”

“It’s okay,” the lady said.

“No, it’s not,” I replied and held out my hand for the change. Jim scowled at me, but he handed it over.

The next time when we left Eddie’s, I was helping him into the van when I noticed he had something clutched in his hand. I pried it open to find the salt shaker. I took it back in and found the table missing a shaker.

The waitress smiled and said, “Just when you think you have him figured out, he pulls something new, doesn’t he?”

That was an understatement. It was always an adventure when we went out to eat. Jim was unpredictable and sometimes I could sense people around us staring. Outwardly, he looked like any other man in his fifties, but his behavior was on the eccentric side. Jim didn’t notice the stares, and I got to the point where I didn’t care.

The thing about eating out—anything can happen. The meal may be mediocre, or it may be delicious. It may be Food Network fancy or it might be one ugly pork chop.

Copyright © November 2010 L. S. Fisher
http://earlyonset.blogspot.com

A Long Drive, Deep Thoughts, and a Cup of Joe

2010-10-26T10:17:00.000-07:00

For a short delusional period this morning, I thought I had a day to just kick back and relax. Then I remembered I was taking Mom to the hospital to see my brother. So rather than drifting back into the dream I was having about going on a trip with an empty suitcase, I staggered to the kitchen to fix a pot of coffee. I just can’t pry my eyes open until I’ve had a cup of coffee.

When Jim and I were first married, I didn’t drink coffee. I thought the stuff was a bit on the bitter side and just didn’t have any appeal for me. I blame my coffee drinking habit on Jim’s grandma. Apparently, she thought everyone drank coffee and as soon as we walked into her house, she plunked a strong cup of coffee in front of me.

The conversation always went something like this:

"Grandma, I don’t drink coffee.”

“What? You don’t drink coffee?” The look on her face was priceless. She would look at Jim and say, “She doesn’t drink coffee?”

“No Grandma, she doesn’t drink coffee.” Then Jim would look at me and grin because he knew what was coming next.

“But, I’ve already poured it!” Like that was the final say. There I would sit: cup of coffee in front of me, Grandma expecting me to drink it, and husband who thought it was funny.
So, I would take a small sip and try not to shudder. First chance I got, I poured it down the sink. When we went for the next visit, the scene played again. Eventually, I just drank the cup of coffee treating it like a dose of medicine. Get it down and get it over with, except, when she kept refilling my empty cup—then, I learned to make it last longer.

Now, I need no urging to drink coffee and feel downright deprived if I can’t have a cup of Joe in the morning. After coffee and a quick shower, I was dressed and out the door. On the long drive to my mom’s house, I roamed through the XM stations on my radio trying to find something she would like to hear. I just knew she wouldn’t appreciate the Classic Rock channel. I came across enLighten and knew the gospel music would be a hit with her.

Listening to the sweet, almost angelic, harmony, I found myself thinking deep thoughts. The kind of thoughts Jim and I used to share about life, death, and all the unexplained things that happen in between. Of course, one of the first things I question is why did Jim develop dementia and why did his life end at the age I am now. I wonder why my brother keeps having strokes. It seems that if I think things can’t get any worse, they can and sometimes do.

My brother already lives in a nursing home and can’t walk, has constant pain, endless headaches, and basically a pretty miserable existence. He is in the hospital because of more strokes. His speech is slurred and hard to understand. He has trouble swallowing and has to be on thickened liquids and mechanically softened foods.

When Mom and I walk into his room, we find Donnie twisted to one side of his bed. He asks us to straighten him up. I push and Mom tugs and we get him in a more comfortable position. After Food Service brings his lunch tray, the nurse wants to move him into a more upright position in the bed. She calls an aide to help her.

“She can help you,” Donnie tells the nurse pointing in my direction.

“Can you?” she asks.

Of course, I can. After all the time Jim spent in the nursing home, I learned how to do everything to make him more comfortable.

On the way to Mom’s house, the hospital called to tell her Donnie had been released. He has to return in about a month for surgery, but for now, he is headed home.

After I dropped Mom off, I did more deep thinking to the backdrop of gospel music. The trip home seemed faster than the trip down. When I reached Sedalia, I stopped by McDonald’s for a cup of Joe—only I got a Mocha Frappe. I can only imagine what Grandma Fisher would think of such a sissy version of coffee. I don’t think Jim would be impressed either—he liked his coffee steaming hot and black. He would appreciate the gospel music, I’m sure, and he would have enjoyed the long drive on a beautiful October day.

Copyright © October 2010 L. S. Fisher
http://earlyonset.blogspot.com/

What is Life All About?

2010-10-19T05:01:00.000-07:00

Sunday morning my seven-year-old granddaughter sat beside me drawing pictures. She labeled the pictures “Cartoon Network” and told me the girl with pigtails was her.

“Daddy doesn’t know what life is all about,” she told me as she put the finishing touches on the picture.

I almost choked on my coffee at her solemn tone. I finally managed a strangled, “Oh? How’s that?”

“He thinks life is about winning,” she said, “and it’s not. Life can be about losing.”

When she said that, I laughed. Rob had warned me about the trophy generation who expect trophies for participating. Kids that don’t want to win, they just want to tie. Winning might upset someone who didn’t win—or (heaven forbid) might feel like a loser.

I’ve always considered winning to be important. Not winning at all costs by any means—but winning fair and square. I never liked to play on a team with someone who didn’t put out their best effort because of an “it’s just a game” philosophy. Competitiveness is an inner urging to do our best whether we are playing a game, facing a tough challenge, or pulling our share of the weight, or more, at work. Coming out in first place is an accomplishment and cause for celebration. Sometimes, the will to win can be the difference between life and death. We have all heard stories about people who refused to die and survived against insurmountable odds because they were determined to win.

“Grandma Linda, I’m serious. If you have the prizewinning pumpkin you can’t make pumpkin pie out of it. The losers get to eat pumpkin pie.”

I had to admit there was some logic to her theory.

“Where did you learn what life is all about?” I asked, curiosity getting the best of me.

“The Berenstain Bears,” she said.

Who am I to dispute the Berenstain Bears? Since I often ponder what life is all about while driving to and fro from my various commitments, I thought about the validity of how life can be about losing.

Anyone who is a caregiver for a loved one with dementia understands losing. We lose our loved ones one skill, one memory, at a time. Day after day we grapple with this situation life has thrust upon us.

When Jim developed dementia, I learned about losing the man I had married, first to the disease and eventually to death. Up until then, life had been difficult at times, but Jim had been my strength and the person who propped me up when I was sad, or just felt like a loser.

Losing Jim made me a much stronger person. I had to make the tough decisions and with no one to pass them on to, I understood Harry Truman’s motto that the “buck stops here.”

So thinking back to a seven-year-old’s statement that life can be about losing, I have to admit that sometimes it is. Losing shapes our character and the fabric of our being in a different way than winning does. We find inner strength that makes us appreciate when life is good.

And my final thought on the matter—pumpkin pie isn’t the only thing we would miss in life if we don’t take a chance on losing.

Copyright © October 2010 by L. S. Fisher
http://earlyonset.blogspot.com

Changing the Rules

2010-10-09T15:29:00.000-07:00

My granddaughter’s last home volleyball game was Thursday night. Somehow I had never seen the volleyball schedule and had missed every game so far. I looked at my calendar and sighed.

“I have an SBW meeting Thursday,” I told my son, Eric, when he called to tell me about the game. The games started at 5:30 in a nearby town, but I don’t get off work until 6:00. Still, I had intended to take some vacation to go to some of the home games.

“Well, maybe you can go to her tournament. That will be either next Saturday or the next one, I’m not sure which,” Eric said.

I didn’t have to look at my calendar to know that it didn’t matter which Saturday—both were booked solid. “I’ll just take off work early and be a little late to my meeting,” I said.

Before I left work, I gave Brenda (co-worker and SBW member) the money to pay for my dinner. She said she would save me a place. “Ask them to serve my meal and if I’m late, I’ll just eat it cold.” I figured that if necessary I could leave before the game ended and be only fifteen minutes late.

I arrived at the gymnasium just as the “B” Team was finishing up their game. I found Eric, Shawna, and Shawna’s mom and dad sitting on the bleachers. Soon the “A” Team finished their warm up and the game was on.

I played on the volleyball team when I was in school and on both a women’s recreational team and a co-ed team with Jim when I was younger. I settled in to watch the game confident that at least this was a game I understood.

A girl served the ball and it went out of bounds. The scoreboard chalked up a point for the other team. I thought my eyes were playing tricks on me. Then, a girl on our team served the ball and the other team returned it, our girls dropped it, so score another point for the visiting team.

“I don’t understand why they are getting points,” I said to Shawna. “Only the team serving can make points.”

“Either team can score regardless of who serves,” she said.

“Yeah, they’ve changed the rules since we were in school,” said Shawna’s mom, Wanda. “At first I was really confused.”

My granddaughter was her team’s best server. She scored five quick points just by tossing the ball in the air and slamming it over. “We couldn’t serve overhand in school,” I said.

As I watched the game, I realized the changes made it a much faster paced game. I suppose that’s much more suited to today’s faster paced world.

On my way to my meeting, I pondered on how many rules have changed over the years. When I was young and dressed up, the only question was whether to wear short or long white gloves. Shoes were generally black or white and you didn’t wear the white ones after Labor Day or before Easter. Everyone dressed up for church, and you wouldn’t have dreamed of wearing your blue jeans or shorts and sneakers. Girls wore dresses to school—it was in the rules.

Some of the rules of life have changed. I heard on the news that for the first time in America, more couples live together without tying the knot than couples who are married. How could such a thing happen? Just to mention a few reasons: people marry later in life, divorce can be financially devastating, there is little to no stigma attached to having children when the parents aren’t married. Sometimes when a loved one has a serious illness, like Alzheimer’s, couples divorce to be able to afford nursing home care.

Rule changes affect everything and everyone around us and can be either good or bad. Changes are bad when it makes things easier, but not better. Rule changes are good if they make the mundane or outdated fresh and new. They may be good if the only good reason for keeping a rule is “that’s the way it’s always been done.”

When I walked into my meeting every woman in the room faced the flag with her hand over her heart. I stopped inside the doorway and joined them to recite the same Pledge of Allegiance I had learned in elementary school. There is no doubt that some rules are better left alone.

Copyright © 2010 L. S. Fisher
http://earlyonset@hotmail.com

When Counting Blessings—Count Your Friends

2010-10-05T05:42:00.000-07:00

I walked into church Sunday and heard someone call out “Hey, girlfriend!” Looking around, I spotted a woman from last Wednesday’s “Girlfriends Guide to Christian Living” class.

Her greeting made me smile with the memory of the evening spent with a new group of girlfriends of all ages. Last Wednesday, we listed the qualities of a girlfriend. The leader, Jo Perusich, wrote them on a whiteboard. The women called out: Honesty, Loyalty, Steadfastness, Can keep a secret, and Bathroom Buddy.

“Bathroom Buddy. I love it!” Jo said.

“Yes,” said the youngest member of the group, Bethany. “When you go to the bathroom, she gets up without you asking so you don’t have to walk across the room by yourself.”

Jo asked us several thought-provoking questions and we were to write the name of a friend and the incident. When we finished, she asked what we had discovered.

“I was surprised that I thought of certain people as friends,” said one woman.

“I noticed the same name came up several time in different roles,” said another.

The homework assignment was to connect with a girlfriend and tell her that you considered her a blessing, a gift of God, and how much you value the friendship. I thought about this and had an old friend in mind.

Sunday morning, I sat beside Sheila, the Memory Walk Coordinator, and shared the news that our walk total was now more than $18,000. After the services, she and I talked all the way to the lobby where we parted. We hugged each other, and suddenly I knew who I needed to share the message with. I took her hands, looked her in the eye, and told her that she was a real blessing in my life.

She got tears in her eyes and said, “You don’t know how much that means to me.”

I am so thankful that Jo challenged us to put into words how precious friends are to us and how much our lives are enriched through giving and receiving the love of friends.

When Jim developed dementia, I lost my best friend in the world. He was the person who always had my back, was always on my side, no matter how misguided I might be. Strangely enough, it was because of Jim’s dementia that my circle of friendship grew.

First, I became closer to my other female family members as they pitched in to help me. I became close friends with women I met through my Alzheimer’s volunteer work including three women I met in Washington DC. We called ourselves the four musketeers. My connection with these women—Jane from New York, Sarah from Virginia, and Kathy from Maryland—would never have happened if I hadn’t gone to the Alzheimer’s Advocacy Forum.

The friendship circle grows through my involvement in writers groups, in my business women’s group, and through work and work-related conferences. We have limitless opportunities to grow our relationships with friends. With each new friendship we open up our hearts to the blessing of giving and receiving.

In this busy, busy world we may not have as much time for friends as we would like. It is amazing how much a lagging spirit can be rejuvenated by squeezing an hour from our schedules to spend quality time with close friends.

copyright (c) October 2010 L.S. Fisher
http://earlyonset.blogspot.com

Doctors Age Just Like Everyone Else

2010-09-28T11:14:00.000-07:00

Recently, my three-year-old grandson crammed a crayon up his nose and a specialist had to extract it. When my son told me about the incident, I said, “Kind of reminds me of the time I lost the pencil eraser in my ear.”

“Was that you? I thought it was one of your brothers,” he said.

I recall that experience vividly, considering I was only a second grader. My ear itched, and I used the eraser end of my pencil to scratch it. I noticed the eraser had fallen out of the pencil and looked all around my desk for it. When I couldn’t find it, I just assumed it had rolled out of sight.

A week or so later, I developed a terrible earache. Mom took me to our family doctor in Stover. Dr. Hoffa sat me on a table and pointed a bright light at my ear.

“Wow, that light is shining right through your ears and onto the wall,” he said.

I might have been only seven, but that didn’t seem right to me. “No it isn’t,” I said. I did roll my eyes around trying to see if the light really was shining through.

The doctor stuck some high-tech instrument into my ear, tweezers, I’m pretty sure. Then, he showed me the little pink eraser off my yellow No. 2 pencil. “You knew that light wouldn’t shine through because the hole was plugged up with this.” he said.

“I wondered what happened to my eraser,” I said.

“Why didn’t you tell me you had an eraser in your ear?” my mom asked.

“I didn’t know it was there!” I said.

The doctor gave me a sucker and sent me on my way. Dr. Hoffa was the only doctor I saw until I married and moved away. He eventually retired and developed Alzheimer’s before his death.

When Jim and I were newlyweds, our family doctor was Dr. Kirby who retired many years ago.

When a family doctor retires, patients scramble to find another doctor. It’s discouraging when you make call after call to hear, “We aren’t taking new patients.” You keep asking yourself questions: Will I have to resort to finding a specialist for each medical problem I have? How will I find a good cold and flu specialist? Is the emergency room going to be my primary physician?

A 2008 University of Missouri (MU) study predicts a 44,000 shortfall of family doctors by 2025. Jack Colwill, professor emeritus of family and community medicine at MU School of Medicine, attributes the shortage to retiring baby boomer doctors being replaced by younger doctors who specialize rather than go into general practice.

Given how difficult it has always been to find a family doctor, this is not a huge surprise to many of us. We have become a more mobile society and if we aren’t moving from place to place, our doctors are. Either way, it’s up to us to find a doctor that fits our needs.

Rural areas will be particularly hard hit. Programs are in place to encourage medical students to become general practitioners in rural areas. MU has programs to place students in rural hospitals for their residencies and pre-admits students each year from rural areas. The students admitted under these programs are more likely to practice family medicine in a rural setting.

Family doctors know who you are when they see you. Your family doctor knows your family history, as well as your medical history. When Jim began to develop dementia, our family doctor knew Jim’s forgetfulness was not normal for him.

There may not be too many old-fashioned general practitioners like Dr. Hoffa, but as long as kids have No. 2 pencils, we need family doctors.

Copyright © September 2010, L. S. Fisher
http://earlyonset.blogspot.com

The Dance and Memory Walk

2010-09-20T19:14:00.000-07:00

The Sedalia Memory Walk was Saturday and the sea of purple shirts showed our community support for loved ones with Alzheimer’s. Our Memory Walk was fun with a cake walk, Don the Balloon Man, refreshments, door prizes, raffle items, and dance routines by the young ladies from Center Stage Academy. Smiles and hugs made the rounds as we connected with others who had walked a mile in similar shoes, helping lighten each other’s load for the journeys we shared.

“Do you remember me?” a lady asked. “I worked at Four Seasons Living Center when Jim was there.” Jim was at Four Seasons four years and although her face looked familiar, I couldn’t come up with her name. “I’m Pat,” she said. “My husband wound up in the same room Jim had in the Alzheimer’s unit.”

“I remember you were having problems with your husband. I’m sorry to hear he had Alzheimer’s.”

“Yeah,” Pat said, “one day the staff found him standing on top of the sink.”

I had to laugh about that one. “Well, Jim did a lot of things, but he never did that!”

“You know, you just have to remember the funny things that happened,” she said. I agreed. It is much better to remember the times we smiled than to think about the distressing times.

Just before we began the walk, our master of ceremonies, Terry Kelley, sang “The Dance,” and I walked up to take a picture of him. The song was so touching, I gave Terry a hug. The tears started flowing because the words of that song are so true for me and for millions of caregivers.

My cousin Reta had taken a picture too, and she pulled me into a big bear hug. Connie Pope from Fair View hugged me too and said, “Are you all right.”

I think through the boo-hooing I let her know I was. “It’s that song,” I said.

Connie said, “Look around, Linda. See all these people here today? They wouldn’t be here if it hadn’t been for you and Jim. You are the one that started this whole thing.” I may have started it, but Fair View has been at every Memory Walk since the first one I coordinated in 1999.

The teams were introduced, then Memory Walk Coordinator Sheila Ream and I carried the Memory Walk banner and led our walkers down Memory Lane toward the fairgrounds. Sheila handed off the banner to her son Phillip who has helped us throughout the year. As we rounded the corner and saw the long line of walkers behind us, Phillip said, “I’ve looked forward to this all year.”

While the prizes were being announced, we handed out purple and white balloons for the balloon release. We used a marker to write our loved one’s names on the balloons. I put Jim’s name in a heart and wrote “To heaven with love.” I tied the balloon onto a basket handle, and while I signed a book, Jim’s balloon broke away and raced toward the sky.

That afternoon, after a leisurely soak in the bathtub, I put on PJs and settled in for the rest of the day. I got to spend the evening with my two youngest grandkids. My three-year-old grandson played with his race cars, and shouted, “Start your engines!” Before when he played, he called his driver Josh, after a relative he has seen race, but after the Memory Walk, he said the driver was Jim.

As our grandson played with his cars, I couldn’t help but think how much Jim enjoyed his grandkids. Jim never got to meet the three-year-old that often talks about “Grandpa Jim” and even pictures his grandpa as the tiny driver in his racing game.

Jim and I parented two wonderful sons. Our four fantastic grandchildren bring so much joy to my life. When I look at my sons and my grandkids, I know it is best that I never knew the heartbreak early onset dementia would bring to our family. I’ve been blessed with love, and the pain diminishes when compared to the dance that forever lives in my memories.

Copyright © September 2010 L. S. Fisher
http://earlyonset.blogspot.com/

Alzheimer’s Awareness - The Color Purple

2010-09-12T18:05:00.000-07:00

I’ve always had a love affair with the color purple which worked well when I discovered it was the Alzheimer’s color. We are gearing up for Memory Walk so I’ve gotten into the spirit by painting my fingernails and toenails purple. Not just any purple—Xtreme Wear Deep Purple.

I dressed for church today in my “Walk to End Alzheimer’s” shirt and topped, or bottomed, it all off with my brand new purple high-heeled Crocs I bought at the Crocs Outlet in Branson.

It so happened that the air conditioning was broken so we shopped in heat more Xtreme than my nail polish. Perhaps, my brain was overheated when I fell in love with the purple shoes, or so my granddaughter seemed to think. She said the shoes were a little weird, but Crocs are comfortable shoes with cushiony padding underfoot that's a lot like walking around with a Memory Foam pillow tied to the bottom of your feet.

At church this morning during the “greet those around you” moment, the lady sitting behind me said she loved my shirt. On the way out the door, another lady admired my shoes.

“My granddaughter thought they were a little strange,” I admitted.

“They are such a fun color!” she said. I had to agree—but then they are purple slippers so gotta love ’em, right?

“They're comfortable too,” I added.

Getting into the purple zone is more than wearing the appropriate clothing and accessories. It is a time to fundraise and get out the word about the Memory Walk. On Labor Day, Jim’s Team raised $1,150 at our traffic stop.

Saturday some of us stood in front of Walmart handing out “Save the Date” cards and forget-me-not seed packets with the tiny sheets of paper stapled to it with walk information and contact numbers. We had a collection bucket available for donations, but our main purpose was to create awareness about the Alzheimer’s Memory Walk.

The Walk Committee has a busy week ahead. We plan to gather door prizes and last minute items. We will make a lot of last minute preparations so that everything goes smoothly on Saturday, September 18.

I’m trying not to panic because my books haven’t come in. Part of my sponsorship is signing and distributing Early Onset Blog: The Friendship Connection. The turnaround is usually a few days on book orders, but as of the last time I checked they were still “in production.”

A lot of work and planning goes into the Memory Walk and that cuts down on the chances of things going too wrong. Rain or shine, I know one thing for certain—a lot of people will be up early Saturday morning and head to the Fairgrounds for Memory Walk. Purple will be the color of the day when we grab up the banner and walk to end Alzheimer’s.

Copyright © Sept. 2010 L. S. Fisher
http://earlyonset.blogspot.com

Labor Day: Happy to Be Busy

2010-09-05T08:10:00.000-07:00

My mom and I recently entered a restaurant and while we stood behind the “Please Wait to Be Seated” sign, the hostess walked rapidly toward us, not letting her unusual gait slow her down. She approached us with a large, friendly smile that made her face glow.

“Two?” she asked. “How are you, today?” She struggled with the sentence.

“Fine,” I replied, “and how are you?”

“Busy!” she said, with that big smile that made you realize she wanted it that way. She was definitely busy, and as we ate our lunch, we watched her lead a steady stream of hungry people to their tables. She had found her niche. A job she was good at and took pride in doing well. It is encouraging to see people working despite an obvious handicap.

Many of us work because we have to, or as a woman I used to work with always said, “I’ve developed this really bad habit—I like to eat.”

With the Labor Day holiday, I couldn’t help but think about the 500,000 people with early onset dementia and how hard going to work each day can be for them. As dementia progresses, it erodes their self confidence as they struggle through the workday. Even getting to work can be a challenge once confusion sets in.

Unlike our hostess who had a lifetime to adapt to her challenges, people with early onset dementia find themselves in the frustrating position of losing skills that may have taken them to the top of their field. They may have skills and talents that identify their very personhood.

Jim dropped out of high school when he was fifteen years old. I once asked him how that was possible and he explained that his family followed the crops to find work. “We moved to a different state and I never enrolled in school again.”

Jim was a high school dropout, but he was an intelligent person. Later he would get his GED, but his forte was working with his hands. Jim never needed instructions to take apart and repair anything mechanical. Early in the disease when Jim was home alone while I worked, I never knew what he was going to try to “fix” during the day. One night I came home to find our VCR was completely taken apart and scattered all over the living room floor.

People with early onset dementia sometimes hide the diagnosis from their coworkers and bosses to remain in the workforce until the disease progresses to the point they cannot continue. Alzheimer’s is a slow process and depending on the proper regimen, it is not always necessary for a person to quit work immediately. It depends on the job and how accommodating the employer is. Perhaps a job can be simplified, or a person can be shifted to a less demanding position.

Each family struggles with what is best for the person with dementia. He may stubbornly refuse to admit he cannot do his job safely. I talked to a woman whose husband was a heavy equipment operator. He was the boss of his family business and was still working although his dementia was advanced. His son worked with him and knew that Dad was jeopardizing their business reputation and endangering both their lives on a daily basis.

Losing a long-term job can be emotionally and financially devastating for a family. When a loved one has dementia, the caregiver may have to quit work too. Early onset dementia takes a toll on every member of the family.

During the Labor Day celebration, take time to pause and think about all the people unemployed because of Alzheimer’s—those with the disease and those who care for them. It might make Tuesday morning seem a little brighter if you are fortunate enough to have a job. When someone asks how you are, you might reply “busy” and smile about it.

Copyright © September 2010 L. S. Fisher
http://earlyonset.blogspot.com

Alzheimer’s Breakthrough Ride - Sedalia MO

2010-08-25T12:14:00.001-07:00

I began this day of vacation at 4:30 a.m. to meet and greet the four Missouri researchers who will cycle 71 miles from Sedalia to Jefferson City. Jon Cirrito, PhD, and Jessica Restivo, are researchers from Washington University School of Medicine in St. Louis. Joining them were Ben Timson, PhD, Professor of Biomedical Sciences at MU and David Oliver, PhD, Assistant Director of MU Interdisciplinary Center on Aging and Board President of the Alzheimer’s Association Mid-Missouri Chapter.

The four researchers and the support team stayed the night at Comfort Inn in Sedalia, and I wanted to catch up with them before they left town. I had a cup of coffee while they ate fruit, drank juice, and prepared for the ride.

I know David Oliver and he introduced me to the other members of the team. Dr. Jon Cirrito showed me a Google map of the route. They would be passing through some small towns that many of the locals have never visited. The bicyclists will go through Clifton City (“not a city,” I informed them), Prairie Home, and Jamestown before arriving in Jefferson City. They have three scheduled rest stops along the way and have no time limit other than to reach their final destination before dark.

“Some of the other groups have hit really bad weather in other states,” Dr. Oliver said as he applied generous amounts of sunscreen to his face and arms. “We credit this beautiful 60 degree weather to collective prayer.”

Dr. Oliver, 68, was the oldest in this group of cyclists. He said cyclists had to sign a release and list the medicines they took. “My list was long,” he said. “I have a stent, poor knees, and lousy hearing, but I am functional and know I can ride this bike 71 miles for this worthwhile cause. I’m looking forward to it.”

We walked outside where the four cyclists each filled two bottles—one with water and the other with Gatorade. Finally, the bicycles were loaded onto the two support vehicles, and we headed across town to Hubbard Park.

The bicycles were unloaded, and Jessica decided she needed long sleeves and pulled a long-sleeved T-shirt over her official Alzheimer’s Breakthrough Ride shirt. They climbed on their bikes and fastened their helmets. Dr. Cirrito took the lead on his bicycle equipped with a GPS.

It was exciting to see this group of researchers be part of a nationwide effort to make Alzheimer’s disease a national priority. The Ride began in San Francisco on July 17 and will end in Washington DC on World Alzheimer’s Day, September 21. More than 55 researchers have been collecting signatures to present to Congress urging them to make Alzheimer’s disease a national priority. The original goal to obtain 50,000 signatures has been doubled to 100,000.

Approximately 110,000 Missourians have Alzheimer’s disease. An estimated 5.3 million Americans have Alzheimer’s and as the baby boomers age, the number is expected to swell to as many as 16 million by 2050.

Dr. Oliver explains that research funding is dismal especially considering the toll on individuals, families, and others. “I believe current research spending is around 375 million. We are riding to encourage Congress to push this to $2 Billion and make AD a major priority like other killer and devastating diseases.”

The side of the “pony” (as the truck is called) says, “The toughest hill to climb is Capitol Hill.” Even with the winding, hilly blacktop ahead of them, I’m sure Jessica, Jon, Ben, and David wholeheartedly agree.

Follow the progress of Alzheimer’s Breakthrough Ride at http://www.alz.org/. While you’re there, sign the petition.

Copyright © L. S. Fisher August 2010
http://earlyonset.blogspot.com

Some Will Walk and Others Will March

2010-08-24T06:56:00.001-07:00

Thursday night we began to finalize plans for our September Memory Walk. Months of leg work, calls, and personal contact have led up to the big date less than a month away. Our catch phrase this year is “It all just falls into place.” At least that’s the way it seems to people who show up on walk day to find that helping hands have joined together to make sure the event runs smoothly.

A Memory Walk is a big undertaking and without community Champions, it would never happen. Champions are the teams like Fair View that have participated since the first walk I organized in 1999. They have been part of every walk, every event that the Memory Walk committee has hosted. Not satisfied with doing a little, they do a lot. They fundraise all year, and consistently support us with thousands of dollars. This year, they took another step and became a corporate sponsor.

It warms your heart to know that even in these tough economic times, people continue to support our local chapter. One of our longtime sponsors is Ken Weymuth at W-K. I was having an oopsie fixed on my new car when I asked if Ken was in the office. I had dropped off a corporate sponsor packet a few months back and had never had a chance to follow up on it. I walked into his office and asked him if he would be a sponsor and he asked, “What will it cost me?” A few minutes later I walked out check in hand.

The Sedalia Democrat has been our advertising sponsor for more than ten years. I have worked with three different publishers. The current publisher, Dave Phillips paired us up with Erin Livengood who takes the time to produce professional ads.

Third National Bank and Central Missouri Electric hold perfect corporate sponsor records. Septagon came onboard during the years Shelley Spinner coordinated the walk. That was also the time we started printing the shirts locally and Main Street Logo pitched in to do that for us.

The list goes on and on—the sweet ladies who give $5 to sponsor a walker, companies that donate food, drink, and door prizes, the host of volunteers that turn up to set up tables or dole out T-shirts, and let us not forget Don the Balloon Man who twists balloons into colorful hats.

We have a walk with ordinary people—sorry, none of us are celebrities. But more celebrities are supporting the Alzheimer’s Association and one of them decided to hold a “March” rather than a walk. Maria Shriver, California’s First Lady has organized a 5K March and candlelight vigil. Several celebrities have already committed to joining in the March—Rob Lowe, Leeza Gibbons, and Jane Fonda—to mention a few. Celebrities can make a powerful impact, but that doesn’t replace the efforts needed by everyday people who have spent time in the trenches caring for a loved one with Alzheimer’s. It doesn’t replace the hugs of support and encouragement for caregivers to help them make it through difficult days, or smiles to lift their spirits when they are overwhelmed with responsibility.

Think about what you can do to make it “fall into place.” It takes all of us who know what it’s like to make the effort to bring Alzheimer’s awareness to our local area so that it might expand to the national arena and onward to a global movement. So whether we march or walk, it is important that we do everything we can to call attention to the alarming escalation of dementia as the baby boomers age. The only way to move forward is one step at a time.

Copyright © August 2010 L.S. Fisher
http://earlyonset.blogspot.com

A Leaf on the Family Tree

2010-08-16T06:48:00.000-07:00

My mom stayed all night with me Saturday night. I was trying to remember the last time she spent the night at my house and finally decided it was when Jim was still at home but needed supervision at all times. I could not get professional help for more than about six hours a day, three days a week. That left a lot of gaps during my forty-hour workweek. My mom would pack a bag and drive for an hour to fill out the weekly schedule. She would arrive before the day help had left and stayed with us a couple nights each week.

I know my brothers and sisters agree with me that we are fortunate to have a mother who is in such good health although she is in her eighties. Mom is fun-loving and still likes to play her guitar and pal around with her sister-in-law, Lebetta.

When my mom came up Saturday to spend the night, we didn’t have anything we had to do, so we visited and spent some quality time together. It wasn’t until after we spent the afternoon and evening together that I realized how much I missed having that much time with her. It’s a sad commentary on how hectic I’ve let life become that I have so little time to visit with my own mother.

My mom and I have a lot to talk and laugh about. Sometimes the conversation turned serious as we talked about dreams we have about loved ones who were once a major part of our lives. Mom talked about her dreams of dad. “He is usually about thirty-five in my dreams,” she said. “He’s always young and healthy.”

“Jim never has dementia in my dreams,” I said.

“I dream about Mommy and Poppy,” she said, meaning her parents. “You know, Lebetta and I were talking the other night about how we know more people that have died than are alive.”

I can’t imagine the hole left in a person’s life when they have outlived all their siblings. My mom came from a big family and she is the only one living. Her parents, sister, and brothers are all gone.

I think about my cousins on Mom’s side of the family. How they’ve each lost at least one parent, and many of them have lost both. My dad died in 1990 at 67 years old. That is not much older than I am now. My mom has soldiered on through two serious relationships that have both ended. It is a good thing that she is a strong woman. She checks on my brother Donnie almost every day. She’s moved to town to be near the long-term care facility where he lives. My brothers and sisters who live nearby, provide the kind of relief for Mom that she did for me when Jim was the one that needed looking after.

In many families, relatives feud with each other and every family gathering is tension filled, because no one can keep track of which family members are not speaking to each other or whose feelings are hurt. Our family has always been blessed with a healthy dose of minding your own business. We are supportive of each other, but none of us try to tell a brother or sister how to live his or her life. Nope, we just live and let live. It may not work for every family, but it certainly works for ours.

Each of us is a leaf on our family tree and, like a leaf, we can’t just hop from our tree to another because we don’t like the limb God attached us to. It is always much better to get along with the other leaves on the same branch.

While I was gone this evening, Mom called and left a message on my answering machine. She just wanted me to know that she really enjoyed our visit. It was too late by the time I got home to call her back, but I have to say a resounding, “Me too!”

I’m thinking that having my mom stay the night is something I need to do more often. Maybe next time she can bring her guitar. Jim would be pleased if guitar music once again drifted through the rooms of the house he built.

Copyright © August 2010, L.S. Fisher
http://earlyonset.blogspot.com

When Puzzle Pieces Don’t Fit

2010-08-08T12:45:00.000-07:00

When Jim developed dementia, I thought it would be a good activity for us to put jigsaw puzzles together. I set up a table and we worked on a 750 piece puzzle. Jim always felt good when he could fit a piece into the puzzle. Sometimes, he bent pieces trying to force them into places where they “almost” fit.

I went to a Business Women of Missouri conference this weekend and was particularly impressed with speaker Mary Gage’s comparison of life to a jigsaw puzzle. She gave some blog-worthy information in her motivating session. One of the things she talked about that I thought was relevant to my life was how sometimes a piece don’t seem to fit, and we just have to lay it aside and put it in later when we find where it belongs.

She asked if anyone ever tried to put a puzzle together without looking at the picture. Not a single hand was raised. No, we all want to know what the picture looks like before we start putting the pieces together. Besides, if we are honest, it makes it a whole lot easier. We don’t waste time trying to place a piece of grass at the top of the puzzle when we know from the picture that it goes at the bottom.

As with many conferences, my “ah-ha” moment didn’t come from the speaker, but rather from a stranger sitting across the table from me. We had a puzzle on our table, and as a group, we were asked to put the puzzle together. Well, it wasn’t a jigsaw puzzle, or I’d still be sitting at that table trying to do my part. It was one of those children’s puzzles with probably less than 30 pieces in it.

We chatted while we put the puzzle together, and the woman said she was a “puzzle person” and that one time she had planned an exercise with puzzles. She had taken two puzzles with the same picture and mixed them together. The idea was that the pieces would be interchangeable and make two puzzles when they were done.

I’m not sure what the point of the exercise was, but she learned that just because two puzzles have the same picture, doesn’t mean the pieces are interchangeable. What she discovered was that the pictures were identical on the boxes, but pieces were shaped differently.

So where is my “ah-ha” moment in this story? People with Alzheimer’s have the same picture on the outside that they had before they developed the disease, but they are trying to fit pieces from a different puzzle into their life’s picture. It’s like they’ve been handed a different box of puzzle pieces to fit into the puzzle they already have. The pieces no longer fall into place, and even if you put one aside, you won’t find a place for it later.

We all know from past experience, that unless the pieces are a perfect fit, you can’t force them into place. A misfit piece leaves a gap, and you know immediately it won’t work. Occasionally, you will find a piece of a puzzle that seems to fit, but it may stand out from the surrounding pieces because it is the wrong color and doesn’t complete the picture.

While Jim and I worked on our puzzles, he would sometimes pick up a piece and walk away with it in his hand. He would lay the pieces down in out of the way spots and sometimes I couldn’t find them. In the completed puzzle all the pieces we had fit neatly together, but sometimes as many as five pieces were missing.

We know where we want our lives to go, and we plug away at the pieces until we find where they belong. But isn’t our personal life’s big picture fuzzy and not a finished image? I believe that our pictures change and our puzzle pieces are constantly adapting to the uncertainty.

When a person has Alzheimer’s, he struggles every day to fill in missing pieces of this puzzle called life. By being supportive, you might help your loved one find some of the misplaced pieces and fit them where they belong.

Copyright © August 2010 L. S. Fisher
http://earlyonset.blogspot.com

Already August

2010-08-02T20:17:00.000-07:00

I turned the calendar this morning and found it hard to believe it is already August. Before this month is over, kids will be back in school, and we’ll all be wondering what happened to the summer and all the plans we made in the springtime.

When I was in elementary school, it seemed to me that summer lasted for a long time. The first day of school some kids had changed so much over the vacation we might not recognize them at first glance.

Now that we are adults, we don’t usually see drastic changes over three months’ time. It’s hard to notice a few more “laugh lines” or that the sun is glinting off more gray hair than the last time we saw someone. And unless you are in the educational field, you most likely see your co-workers nearly every day and don’t have much occasion to be shocked by a change that happened while you weren’t looking.

August is State Fair month. It is usually extremely hot or stormy. What is it about the State Fair that brings out the worst in the weather? Is it because all us wimps are used to air conditioning and suddenly find ourselves in the great outdoors—walking around on hot pavement—without any shade. What’s not to love about that?

It seems like time goes by faster than it ever did. Not only is summer almost gone, but with surprising speed we’ll be into 2011. Here we are ten years into the twenty-first century and I still sometimes want to put “19” in front of the year.

August was once a time of birthday celebrations. Jim would have been 65 years old later this month. He lost the battle with dementia more than five years ago—and never made it to his 60th birthday.

At one time, in my youth, I’m sure I thought anyone in his or her 60s was ancient. Now, it doesn’t seem old at all. I have three older siblings who are in their 60s, and I’m getting pretty darn close to it myself. I have a little time left, but as fast as time goes by, we’re going to have to call the fire department before anyone lights the candles.

Growing older is like anything else—there is good and bad. On the plus side, I think we older people don’t worry so much about what others think of us. We still like to look good, but we would rather have a few wrinkles than have a surgeon pull our faces into a plastic mask. Some of us wear our gray hairdos proudly, or else we just cover the gray with whatever dye suits our fancy. See a man with a bald spot and you’ll often see one that shaves it all off as if he had it planned all along. Another plus side to getting older—our eyesight begins to fail us and (guess what!) that makes everyone look better. We can’t see the flaws like we once could.

On the downside, we find we can’t always ignore some of the things we used to. Last night when I woke up with a heavy feeling in my chest, I debated whether it was from all the acidy tomatoes I had eaten, or whether I needed to call 911 to get emergency medical help. I look at myself in the mirror and think, I may not feel too old, but I am for sure old enough to have to consider a heart attack as something not too far out of the realm of possibilities.

Another down side—you may only pack on a pound or two a year, but we know what that means. The more candles on the cake, the more likely we are to be packing extra pounds around the old midsection. That in turn causes health problems—diabetes, high cholesterol and triglycerides, high blood pressure, and on and on and on. We wind up with problems in body parts that we didn’t even know we had. Thank goodness for Google and all the health networks available with all the symptoms, side effects, and health alerts that any aging computer savvy middle-age-going-on-senior might have.

Here it is already August—and the next thing you know it will be autumn. Probably in the next week or so Halloween decorations will be in the stores. Time passes by, we flip the calendars and wonder what happened to summer. It used to seem like it lasted so long and now it just flashes by with the speed of life.

Copyright © August 2010 L.S. Fisher
http://earlyonset@hotmail.com

Something to Look Forward To

2010-07-25T10:27:00.000-07:00

Life is more fun and exciting when we move through it with anticipation. It is easy to get into a rut or a funk when all you have to look forward to is drudgery.

Jim was always the traveler in the family, and he was happiest when we had an upcoming trip. He would plan for months and pack weeks in advance. “I have to have something to look forward to,” he would always say.

Later, to make it through the caregiver years, I took Jim’s advice. I’ve kept up the habit of marking my calendar months in advance when I have an upcoming event or trip.

It doesn’t take a major event to give my spirits a makeover—I’ve learned to find joy in unexpected places. I spent last week in Minneapolis for a benefits conference which is held in three or four different locations throughout the year. Minneapolis isn’t the most popular location, but it is the one that worked out for my schedule. To sweeten the deal, my co-worker and I went online and found tickets to “A Streetcar Named Desire” at the Guthrie Theatre.

With the extensive traveling I’ve done throughout my lifetime, I had not once been in Minnesota. As the plane came in for a landing, the thing that caught my eye was all the lakes. It looked like every housing development was clustered around its own lake.

Our hotel was at the city center and Brenda, my co-worker, and I pulled our suitcases toward the exit with full confidence we could catch a taxi to the hotel. All the taxis were on the other side of the street behind a barricade. I had never seen a setup like that before. We found a policeman and asked him how to cross the street. If that doesn’t make you feel like a country cousin, nothing will. He called it “poor design” and we had to go back inside the building, down a level, cross under the street and then up a level to come out on the other side.

On the way to the hotel, Brenda asked the taxi driver where the Mall of America was located. “It’s the other side of the airport,” he told us. “It will cost you about $80 for a taxi from your hotel.”

How can you go to Minneapolis and not visit the iconic Mall of America? Isn’t that sort of un-American? Not to be deterred, we checked with the concierge, knowing that downtown hotels would not want to lose customers because it cost so much to get to the huge tourist attraction across town. Sure enough, he told us we could exit the hotel turn the corner, go two blocks and take the light rail to the Mall of America for $1.75. Much, much better than $80.

The best way to get to the Guthrie Theatre where the Tennessee Williams’ play was showing was on the light rail. We rode the street car known as Hiawatha to watch a “Street Car Named Desire.” The theatre was only two blocks from a Transit Station, and when the play let out at 10:45 p.m. we walked to the station. The trains passing by in the other direction were jammed with Twins fans who had boarded at Target Stadium. Before long, we hopped on and rode back to the hotel. Round trip equals $1, experience priceless.

We kept noticing a lot of young ladies wearing tiaras and beauty queen sashes. They were in town for the Queen of the Lakes competition and the Aquatennial Torchlight Parade. Before the parade, hundreds of runners participated in a 5k run. All this took place within a half-block of our hotel. I don’t recall ever seeing so many people run and the parade turned out to be the parade that never ended. Long after we were back in the hotel room we could still hear the pa-rum-pa-rum-pum of the high school bands.

As a bonus, the conference turned out to be one of the best I had ever attended. Interesting speakers updated us on all things benefit related.

While riding the light rail, we noticed all the people climbing on board with their suitcases to go to the airport. The train stopped at two different terminals, but a chart showed that we would get off at Lindberg to fly on Delta. Okay, we could take a taxi for $40, or ride the train for $1.75. It wasn’t a tough decision at all.

All in all, it was a great little break from everyday work. Having something to look forward to helps me wake up in the mornings and want to get out of bed. Having a good time and not breaking the bank, is a plus. Still, as much as I enjoyed it, a week was long enough and I woke up with a singing heart this morning because I’m at my favorite place—home.

copyright (c) July 2010 L.S. Fisher
http://earlyonset.blogspot.com

Comparing Apples to Pears

2010-07-19T13:50:00.000-07:00

The Alzheimer’s Association sent a newsletter this week that says “pear” shaped women are at higher risk of developing Alzheimer’s than “apple” shaped women. This is the first health bulletin I recall that gives apple-shaped women, who carry excess weight around their waists, an advantage over pear-shaped ladies, who carry their weight on their hips and thighs.

I know most women would prefer to be slim and trim, but that becomes harder as we grow older. In fact, a recent obesity report says that slightly more than one-third of Americans are obese. Obesity in my home state of Missouri is 29.3 % and we weigh in at No. 12 in the state rankings.

If you don’t consider yourself to be obese, but merely overweight, you should check the guidelines. BMI (body mass index) is used to determine whether an adult is merely overweight or obese. If your index is in the 25-29.9 range, you are overweight. Anything over the magic 29.9 indicates obesity. If you don’t know your BMI, you can find free BMI calculators on the Web. One thing is obvious when I look at mine—I just need to be a couple of inches taller. Who would have ever thought my goal in life would be to have a BMI that falls into the “overweight” category.

I’ve been honest enough to rank myself with the apple shapes for many years. The extra weight around my middle makes it hard for me to tie my shoes and dang near impossible for me to polish my toenails. That is a major problem during the sandal-days of summer. The only thing I can say is that once I huff and puff until I get it done, the super-duper nail polish I buy stays in place for several weeks.

Finding my way around polishing my toenails doesn’t make me any healthier. Apple shapes have a greater risk of cardiovascular disease. The recommendation for both pear-shaped and apple-shaped women is, of course, to lose weight. Higher risks for any obesity-linked disease have to do with the type of fat stored in our bodies. Women who carry their weight on their behinds, hips and thighs store the kind of fat that increases their risk of Alzheimer’s. Cognitive tests show a relationship between the amount of fat and forgetfulness.

I have high cholesterol and triglycerides. My apple shape puts me at a higher risk for heart attack, diabetes, high blood pressure, and stroke. Holy cow, that should be enough to get me on a serious diet. It is easier to think of dieting right after my cholesterol and fat rich breakfast of bacon and eggs. I have been a bad, bad apple-shaped woman this morning. I don’t make a habit of eating such a breakfast, but there’s something about a Saturday morning that makes it irresistible. I’m usually in such a rush that I’m lucky to eat an English muffin or bagel. Skimping on breakfast goes against my upbringing.

I was raised to believe that a day should start with a good breakfast. Health and nutrition guides tout the importance of breakfast based on student test scores and adult productivity in the workplace. Any diet aficionado will tell you to eat your calories earlier in the day. I’m pretty sure most diets don’t recommend the kind of breakfast I ate this morning, but the general idea of taking time for breakfast is there.

The bottom line is that to reduce Alzheimer’s risk, pear-shaped women should lose weight. Don’t we all know that exercise and losing weight is part of a healthy lifestyle? I have a gym membership and, at least most of the time, opt for low calorie, no-sugar, omega rich foods, I lose probably fifty pounds a year, but it’s the same five pounds over and over.

Genetics determine our body shape, and we just need to do the best we can with our inheritance from our foremothers. Living a long life isn’t the only goal we have as intelligent human beings. We are stewards of our bodies and want to live happy, healthy, independent lives.

copyright July 2010 L. S. Fisher
http://earlyonset.blogspot.com

States Plan for Alzheimer’s

2010-07-11T12:22:00.000-07:00

Alzheimer’s Advocates throughout the United States have worked with their home states to develop a plan to prepare for the silver tsunami made up of aging baby boomers. So far twelve states have completed their plans. Another eighteen states, including Missouri, are developing plans.

In addition to the expected elected officials and aging professionals, the nineteen member Missouri Task Force includes a person with memory loss and a caregiver. Community Forums were held throughout the state to address the challenges of families facing Alzheimer’s disease.

The 110,000 Missourians who have Alzheimer’s disease are cared for by 180,000 unpaid caregivers who provide 156 million hours of unpaid care. Most caregivers want to care for their loved one at home as long as possible. With the necessary support and services in place, this army of dedicated unpaid caregivers can save the state $1.7 billion.

The Missouri Community Forums helped the Task Force pinpoint the areas that needed attention. The concerns family members voiced at the Alzheimer’s Association Mid-Missouri Chapter’s forum were:

1. Access to early and accurate diagnosis by doctors and health care professionals.
2. Availability of affordable home health and respite care to keep loved ones at home longer.
3. Investment from the state of Missouri for Alzheimer’s research.

This short list of goals is reasonable, and any caregiver can attest to their validity. Early diagnosis is important. If dementia-like symptoms are caused by a treatable condition, it is important to take proper measures to address the underlying problem. If the diagnosis is Alzheimer’s, a proper treatment regimen can be started when it does the most good. Early diagnosis helps the family plan for the future.

Affordable home health and respite are basic needs when a loved one is cared for in the home. One person cannot be awake and alert twenty-four hours a day, seven days a week. Providing care for a person with Alzheimer’s is a huge undertaking! Not only do states need a plan, individuals need one to prevent burnout and illness. A care plan designed to provide relief for the primary caregiver with home health support and occasional respite care will keep people in the comfort of their own homes longer.

The state of Missouri annually spends $100 million in Medicaid for dementia long term care. By investing in Alzheimer’s Service Grants to support families caring for their loved ones at home, the state could save millions in Medicaid dollars.

The Missouri Alzheimer’s State Plan will be delivered to the governor in November as part of Alzheimer’s Awareness Month. It is a fiscal responsibility of our elected officials to tap into this valuable resource of dedicated caregivers.

Copyright © July 2010, L. S. Fisher
http://earlyonset.blogspot.com

To see which states have plans:
http://www.alz.org/national/documents/StatePlanMap.pdf

What Do You Like Best About Independence Day?

2010-07-05T16:32:00.000-07:00

Ask most people their favorite part of Independence Day, and their automatic response would be “The fireworks.” What’s not to love about exploding patterns of brilliant color and the thunderous booms of deluxe pyrotechnical wonders?

The fireworks displays are not my favorite part of the holiday, perhaps because as a Vietnam Veteran, Jim had serious problems dealing with the warlike sounds. Have you ever thought about how hard it is to make it through the 4th of July without being exposed to fireworks? It’s really unavoidable.

As dementia began to affect his reasoning, Jim regressed to the time of war and the posttraumatic stress that went with it. He called me at work one day. “Those boys! Those mean boys!” I couldn’t get him to tell me what had happened. I was afraid he had hit one of them with the car. I came home to see what had upset him so much, and he finally stopped shaking long enough to tell me the neighbor boys had set off some firecrackers as he drove by.

So after years of avoiding fireworks, I’ve watched the fireworks display at Truman Lake for the past two years. J.B. and Wanda have their house festively decorated and the food is fantastic. The breeze and cooler temperatures this year were perfect for sitting on the back patio visiting with them and my son and daughter-in-law.

More important than the fireworks and food is spending time with friends and family. My sixteen-year-old grandson lit the fireworks in the yard. Between choosing and lighting the fireworks, he checked his cell phone for text messages. My twelve-year-old granddaughter and I made arrangements to go see the latest vampire movie. My grandchildren are growing up so fast that I chide myself for being so involved in work and writing projects that I don’t spend enough time with them.

While I was at the lake, my youngest son and his family drove to my house to watch fireworks at Julie’s backyard celebration. It doesn’t seem that long ago that when Rob and Julie’s brother wanted to go, Julie always asked, “Can I go with?”

After an evening spent with friends, Rob and his family planned to leave early for their Colorado vacation. They were asleep by the time I got home, but my seven-year-old granddaughter met me at the door with a hug. She always sleeps with me, and had told her mom and dad she was waiting up for “Grandma Linda.” I tucked her in and she was fast asleep by the time I was ready for bed.

The next morning, she cuddled up next to me while I drank my coffee and opened the “Why?” book. I read the questions, and she read the answers. While she read about molecules, my youngest grandson brought his play golf game into the living room to practice his swing. You would have thought he made a hole in one when he hit the ball over his dad’s head and into the space between the couch and wall. Then he found a handheld bowling game and wanted his dad to make it work.

“The batteries must be dead,” Rob said. Pretty soon, the game was up and running.

“You must have figured it out,” I said. Rob told me he hadn’t figured it out at all. I guess you can’t expect a grownup to compete with an almost three-year-old.

Spending time with family was always Jim’s favorite activity. If he had never had dementia, I bet he would have tolerated, perhaps enjoyed, watching the brilliant aerial kaleidoscopes while surrounded by loved ones. It is for certain he would have been a proud dad and grandpa if he could see his family now. Jim would have savored every moment and have recognized the thunderous sounds to be a national celebration of independence and known that he had done his part to keep America free.

copyright (c) July 2010 L.S. Fisher
http://earlyonset.blogspot.com

Eye to Eye Communication

2010-06-26T13:45:00.000-07:00

All eyes were on fathers last Sunday as we celebrated Fathers Day. During Sunday worship which naturally focused on fathers, our pastor talked about what a great father his son is to Lake. When Lake misbehaves, his dad gets on eye level to talk to him. That eye-to-eye contact is key to dealing with inappropriate behavior.

Communication is a problem in any relationship, and can become a major challenge when your loved one has dementia. To keep the lines of communication open, you can develop a strategy to focus on the feelings and not the words.

Jim sometimes said just the opposite of what he meant. If he said, “It’s cold in here!” and he was sweating, I knew he meant “hot.” As the disease progressed, and aphasia silenced Jim, I learned to read his body language and facial expressions to communicate with him. If he cried, I didn’t assume he was sad, I knew he might be hurting.

Some strategies to help keep the lines of communication open with your loved one:

Keep good eye contact as you speak.

Use short simple words and sentences, but don’t use Elderspeak or baby talk. You are communicating with an adult who has a disease that affects his or her ability to process information.

Pause to give your loved one time to process what you have said. Don’t expect a quick response, or even an appropriate one.

Use gestures to reinforce your words. Early in the disease when Jim was still able to drive I learned to point left, rather than say “Turn left.”

Tone of voice matters. When you speak in a sharp tone, the person may become anxious or combative. If you speak too rapidly or softly, they may not catch what you are saying.

Validate the person’s concerns.

One night at the nursing home, I observed a perfect example of how a visitor helped calm a resident by validating his concerns.

The resident, Frank, fidgeted and his brow was wrinkled with worry. He wore his heavy winter coat and paced the hallway. “I need to find a way out of here,” he said. “I have to tend to my cows and put the horses up.”

A man who was leaving after a visit with another resident passed Frank in the hallway and apparently knew what worried Frank and made him restless in the evenings. He stopped and made eye contact with Frank, and patted Frank on the arm as he spoke, “Frank, I’m going to go by your house and feed your cattle and put the horses in the barn.”

Frank turned and headed back to his room. Relief made his walk lighter. “Whew!” he said, “I’m sure glad that is taken care of.”

Just like the father who used eye level communication to get his point across, you show respect by giving the conversation your full attention. You are not talking down to your loved one, but have opened up a line of communication that goes beyond words.

Alzheimer's Reading Room: What is it like being an Alzheimer's caregiver? Unconditional Love

2010-06-24T14:59:00.000-07:00

I submitted an article to Alzheimer's Reading Room about my caregiving experience. The Reading Room is an excellent source of information about Alzheimer's and includes everything from research information to personal stories like mine. Kudos to Bob DeMarco for maintaining and constantly updating this excellent site!

Alzheimer's Reading Room: What is it like being an Alzheimer's caregiver? Unconditional Love