No Resolutions—Hope for the New Year

Since I didn’t have to wake up early this morning, I did. I lay there thinking about how this year has gone and pondering my hopes for the New Year. I don’t like resolutions, so I decided on hopes this year. After several minutes of deep thinking, I tried to go back to sleep, but Katrina decided to start yowling at the top of her cat lungs.

I checked Facebook to see where my blog rated this morning in Healthline’s best health blog of the year contest and saw a post by author Linda Apple that said, “A New Year’s Resolution is something that go in one year and out the other.”  Linda said that’s why she sets goals instead of making resolutions.

I liked the idea of setting goals too. A goal should be measurable so you can see your progress. For instance, instead of  a resolution, “I’m going to lose weight,” you could set a goal to “Lose five pounds by Valentine’s day.” Makes more sense, doesn’t it?

Still, I’m going with New Year’s Hopes this time, simply because hope is so important. Of my many hopes, I chose five to share with you.

1. I hope that real progress is made to find a cure and effective treatment for Alzheimer’s. I’m not hoping for something that might work someday—I want results NOW. With 5.4 million people in the United States living with Alzheimer’s, I hope that researchers find therapies that really make a difference in their quality of life and their caregivers’ quality of life. My hope is that a prevention will be found so that as we Baby Boomers age, the projected 10 million cases of Alzheimer’s doesn’t happen.
2. I hope my family stays healthy. This has been a tough year for my family. In November, my brother Donnie lost his long battle with debilitating strokes brought on by brittle diabetes. A scant three weeks later, my thirty-nine-year-old niece Angie lost a year-long fight with colon cancer. My cousins Bonnie and Alyce died and my Aunt Lavera died from Alzheimer’s. When loved ones leave this world, we feel an emptiness that can’t be filled. They are alive in our memories, but how we miss being able to joke with them and hug them close to our hearts. Our family has lost enough to last a long time. So my hope, and prayers, are that my huge, dysfunctional family stays healthy and happy throughout the year(s) ahead.
3. I hope for World Peace. Okay, I know that is a huge order, but if I’m going to hope, I might as well hope big. I know from the way Vietnam affected Jim that going to war and killing other human beings is a burden that rests heavy on a soldier’s soul. So many aspects of war leave both visible and invisible scars. Each soldier’s death is a tragedy, not just for the people who love them, but for all of us who reap the benefits of freedom.
4. I hope for school safety. I hope that parents can send their children to school with confidence that they learn in a safe environment. I hope that real solutions are found and the safety of our children are put first, and that we realize there are no simple answers. I hope that serious thought is given to making school a safe haven instead of the status quo of political rhetoric and special interest groups.  
5. I hope for HOPE! No one in this country should be without a way to fulfill his or her basic needs. I hope for homes for the homeless, jobs for the unemployed, and food for the hungry. I hope for emotional needs to be met—love for the lonely, friends for the outcasts, family that is supportive, empathy for the struggling, and compassion for the less fortunate.

I have many other hopes on my list. It really isn’t so important what you or I hope for, but that we never lose hope. The final hope that I’m sharing with you today is that you have a New Year filled with health, happiness, and love.

Copyright © December 2012 by L. S. Fisher

http://earlyonset.blogspot.com

MRI – Diagnostic Tool for Alzheimer’s and FTLD

When a young person develops dementia, physicians have a difficult task of determining the underlying cause. If a familial disease exits, it is easier to look at a biomarker of that particular disease, but in many cases, there is no family history and the long, painstaking process of elimination begins.

When Jim developed dementia, our process to diagnosis was a complicated path with many twists and turns. One of the early tests was an MRI (magnetic resonance  imaging) which oddly enough was determined to be “normal.”

A year later, after an abnormal SPECT (single-photon emission computed tomography) scan, the neurologist ordered a second MRI. Unlike the MRI a year sooner, this one came back with a transcript that listed several abnormalities. It doesn’t seem to me that Jim’s brain would change that much in a year, so I often wondered if clues were missed in the first MRI. Perhaps they were looking for a brain tumor and didn’t see one, or could the person who read it not notice that he was looking at the brain of a forty-nine year old man?

Regardless of the issue, I was disappointed that the initial MRI didn’t show the changes in Jim’s brain a year sooner. It delayed our finding out that his forgetfulness and loss of skills was a brain disease and not some kind of mental issue.

An MRI is a valuable diagnostic tool when the information is carefully interpreted. A new study at Perelman School of Medicine at the University of Pennsylvania has shown a seventy-five percent accuracy differentiating between Alzheimer’s and FTLD (frontotemporal lobar degeneration). FTLD often affect younger people and is the most common form of dementia for people under age sixty-five.

Some of the methods previously used to accurately determine the difference between early onset Alzheimer’s and other types of dementia were more invasive—for example, a lumbar puncture. Often, the real cause was not known until autopsy, as in Jim’s case. After ten years of numerous tests, treatments, and five years in a nursing home, we finally learned that Jim’s Alzheimer’s type of dementia was specifically corticobasal degeneration. It was a disease I had never heard of and had not once been offered as the diagnosis.

I know the agony and frustration a family goes through while trying to uncover the underlying cause of a loved one’s dementia. Maybe in the big picture, it doesn’t always make a lot of difference in the treatment. It can make a difference in whether the side effects of some of the medication is worth the benefits especially if the drug therapy targets Alzheimer’s plaques, but no plaques exist with the disease your loved one has.

Also, you wonder at what point the tests become more expensive than they are worth. If an MRI can screen for Alzheimer’s and FTLD, a more expensive PET (positive emission tomography) or invasive lumbar puncture may not be necessary. Medication that helps with the symptoms of Alzheimer’s could be targeted to those that it helps rather than given to everyone with dementia symptoms.

The researchers who conducted this study used other methods to confirm the MRI results. Since the MRI could differentiate in seventy-five percent of the cases, only the remaining twenty-five percent who could not be determined would need further testing.

This is progress using a test that has been around since the early 1980s. The results of this new study increases the possibility that MRIs can be used to measure disease progression in clinical trials or to determine the effectiveness of drug therapies.

Personally, I’m for anything that helps families learn what type of dementia their loved one has and for diagnostic tools that can streamline clinical trials.

Copyright © December 2012 by L.S. Fisher

Earlyonset.blogspot.com

Simply Wonderful Time of the Year

This Christmas season, I’ve enjoyed driving around and seeing the elaborate light displays. It seems that some people add to their displays each year and just when you think they can’t cram one more display on their lawn they go and prove you wrong.

“I think I found where the Griswolds live,” I told my son a few weeks ago.

“Was it on Highway 50, toward the edge of town?” he asked.

“Yes! I thought they lived on Highway H, but now I’ve decided this is where they live.”

This weekend, I saw a special on TV about people who spent months setting up their Christmas lights. These are people that had miles and miles of electric lights, homemade displays, and fuse boxes that looked like they would serve a small city. They involved their entire family in the elaborate annual productions. One of the kids made a statement that made me realize the motivation behind this way overboard lighting exhibition. “I thought working on the lights was perfectly normal and that everyone did it,” one of the girls said. I guess if this is how someone wants to celebrate the holidays, more power to them. Literally. 

Maybe part of the reason I don’t quite “get” these elaborate celebrations is because when I grew up, Christmas was a simpler holiday. We had a cedar tree with a few strands of garland, popcorn strung on thread, icicles, and colorful bulbs. I can remember being really worried if we didn’t have snow because I was afraid Santa wouldn’t be able to get his sleigh to our house.

Some people become almost frantic to spread the joy at Christmas time, while others feel like they are letting their families down because they can’t seem to find the appropriate “happy holidays” feeling.

Perhaps one of the hardest things to accept is that you can’t force someone to have an elaborate or happy holiday because that is how it has always been for you. Over the many Christmases I’ve seen in my lifetime, I’ve had good holidays and sad holidays, white Christmases and blue Christmases.

I think my peace with the holidays came with modifying my expectations. I’ve found that if I expect the holiday to be something extraordinary, I may be disappointed. If I expect it to be a time of peace and restfulness, and that is what happens, I’m perfectly content.

Holidays at our house changed with Jim’s dementia. I learned that we had to keep the holidays simpler to keep from upsetting him. A lot of glitz and holiday cheer would leave him confused and looking for the photos I had put away. We learned to adapt.

Simpler holidays fit into my plans better too. As a caregiver, I was tired all the time. It was hard to muster up the energy to do all the little things that I had done in the past. I found alternate ways of celebrating the holidays when I couldn’t spend hours shopping. I started buying certificates of deposit for my grandkids’ education. Years of putting money aside began to pay off this year when my oldest grandson began college.

During this holiday season, if you are a caregiver, give yourself the gift of a simpler holiday. Do the things you love to do and skip the things you do just because it’s expected. If you’d rather stay home and watch old Christmas movies and drink eggnog or a cup of cocoa, hey, that’s what you should do. Don’t let others “guilt” you into making the holiday something that doesn’t work for you anymore. If you want to buy cookies instead of baking from scratch, then do it. But if you love making sugar cookies or homemade candy, then find time for it or recruit help so that it more enjoyable.

One of the things that we enjoyed doing even after Jim was in the nursing home was to load up and drive through some of the light displays set up at the state school. Of course, we were always looking for the Griswolds too. As for me, I plan to have a simply wonderful Christmas time. I want to relax, enjoy, and be selfish in celebrating the holidays in my own way.

My Christmas wish for you is that you celebrate the holidays in a way that brings peace and joy in your heart.

Copyright © December 2012 by L.S. Fisher

www.earlyonset.blogspot.com

The Mayans May Be a Joke, But They Weren’t Funny

The biggest jokes going around on the Internet are about how today is predicted as the end of the world per the Mayan calendar. Of course, most of us just see it as a joke since we’ve gone through many such dire predictions during our lifetimes. 

No, it wasn’t always the Mayans, it’s was usually some fringe religious group who claimed to have a direct line to God’s ear. Their feelings were usually expressed as “the  world is going to end because we’ve turned  into a cesspool of humanity”  and "we" or possibly "they" deserve to be cremated from the face of the earth.

I have to admit that I haven’t felt too well the past week and sure haven’t had time to give any credence, much less joke time, to the Mayan end of the world. As far as when that event is going to happen on a global basis, I guess I’ll just have to go with what Grandma Whittle told me when I was a child and rumors of the “end” were rampant. “Not even the angels in heaven will know that date,” Grandma assured me. I believed my grandma more than I believed some fanatic holding a sign, and my faith was well founded. The next day dawned just as beautiful as any other day.

Now the Mayans, on the other hand, have always fascinated me. I first read about them in social studies in elementary school. I couldn’t think of anything more fascinating to see than the Mayan structures, unless it was the pyramids of Egypt. I dreamed of wandering through a jungle and coming up moss-covered ruins.

Is it any wonder that when my son and daughter-in-law invited me to Mexico several years ago that I was luke warm to the idea until they mentioned we’d be staying close to the Mayan ruins? Then I was all eager to go and number one on my list of things to see was Chichen Itza, or Chicken Pizza as my son called it. Of the four of us, I was probably the only one who was thrilled to be wandering around in the sweltering heat and pushing past the droves of locals hawking cheap tourist trinkets.

Always one to push the lure of Mayan culture to the limits, I went to a closer attraction the next day on my own. Unfortunately, that day was the closest I’d ever come to heat stroke and that took a little bit of the fun out of it for me.

But, on day one, I had absorbed a lot about the Mayan culture. They were violent people who believed in rewarding the victors of “ball games” by allowing the team leader, or captain, to serve as a sacrifice to the gods. I’m thinking that my heart wouldn’t be much in a game if winning meant I would be beheaded.

The Mayans may have seemed like mythical, powerful people with a vision of life, but they were selfish people who used their superior power to inflict unspeakable pain upon others to promote their beliefs. They built their temples, buildings, and structures to benefit the elite group of leaders.

Sounds impossible, doesn’t it? Or maybe not so much if you just look around. Here at home, now, we just witnessed an unspeakable disaster in an ordinary community and rather than respectfully allowing the families to mourn, we are intruding with the media. Politicians are scrambling to make their point as to why their political stance on constitutional rights or gun control is the answer to preventing disasters in the future. I’ve seen this disaster blamed on everything from lack of prayer in school to not allowing teachers to pack side arms with their lunchboxes. If the truth is told, there is no simple answer because this isn’t a simple problem. A lot of worlds ended at Sandy Hook, and it wasn’t because a Mayan calendar predicted it.

All I can say is, that if I didn’t believe my Grandma Whittle and figured that if the angels in heaven didn’t know when the world was going to end, I wouldn’t have any money left in the bank today. Nope. I would have spent every blasted penny and had one heck of a good time in the process. I wouldn’t be sitting here at home; I’d be with my family sharing every happy memory I could.

Obviously, since I’m just watching TV…not something that even gets close to the bucket list…I’m expecting tomorrow to be just another day. As long as I don’t have visions of jungles, winning ballgames, or watching heads roll, I plan to have just another ordinary night and wake up to a new day tomorrow. While I’m at it, I’ll just thank God that I’m not a Mayan.

Copyright © Dec 2012 by L.S. Fisher

http://earlyonset.blogspot.com

Where There’s Smoke, There’s Flames

My little fire earlier this week wasn’t the first one I’d had, but I was a little out of practice and might have slightly overreacted. The last fire happened when my kids were little and we lived on Newland Hill—not too far from where I live now.

That time, the fault was a wood stove with a pipe too close to the ceiling and an inexperienced fire builder—me. Probably the funniest part about the story was that Eric was a little boy and he was in the bedroom where the fire started. He was blissfully playing the chord organ and hadn’t noticed that the ceiling was on fire.

I got Eric out of the bedroom and ran to the kitchen to see what I could get some water in to throw on the flames. I found a large mixing bowl and ran across the floor. I looked up at the flames eating away at the ceiling and hesitated as I thought about what a mess it would make. Then, I realized that that wouldn’t be close to the mess the fire could make.

I gave a mighty heave and sure enough the flames were fewer. I ran back through and dialed my sister-in-law and handed the phone to Eric. “Tell her to call the fire department,” I said. I knew Dinah’s number but didn’t have a clue what the fire department’s number was, and believe it or not, we did not have 911 service.

Finally, on one of my trips back through, I grabbed the phone and ordered the kids to go outside. “I think I’ve got it,” I said, “but they should probably check to make sure it isn’t smoldering anywhere.”

I called Jim at work and Marcie, the unambitious secretary informed me that he was on a ladder and couldn’t come to the phone. “We have a fire at our house,” I said. “I need to talk to him now.” Needless to say, Jim and my inlaws beat the fire department by fifteen minutes.

Later, my sister-in-law told me that Eric’s voice was so high that she didn’t recognize him, and all she could think of was that some little kid’s house was on fire and in desperation, he had called her number.

When the fire department arrived, they chewed me out for  putting the fire out on my own. I really think the house would have burned to the ground if I’d just gone outside and waited for help to arrive.

A few weeks ago, my ancient microwave finally bit the dust. It quit working and smelled like an electrical fire. I wasn’t home at the time, but Eric took it out and set it on the porch and tried to get the smell out of the house.

I went without a microwave for several weeks much to everyone’s surprise.

“How are you cooking your oatmeal in the mornings?” my daughter-in-law asked.

“The old fashioned way,” I said. “I use a pan.”

I finally broke down and got a new one because, let’s face it, that caused more dishes to wash.

I scoffed at my youngest son when he said I needed to rethink how long to cook things with a “real” microwave instead of one so old it had a dial and the strength of a strong light bulb. “We have one at work that has a higher wattage. I know how to use a microwave,” I said.

Sure enough, I could cook oatmeal in my new microwave and warm up my coffee when it got cold. Not a problem.

Sunday, I wasn’t feeling too well and thought that a baked potato sounded good. Without a clue as to how long it took to bake a potato in the new microwave, I proudly use the preset for “baked potato” and wandered back into the living room to continue watching a show on my DVR.

Suddenly, I heard a strange popping sound in the kitchen, then a slutter, and crackling. I jumped up and as I rounded the corner, I saw a potato in full blaze in the oven. I shut it off and without hesitation, threw some water on it. Soon I had the fire out. Then, I remembered to unplug the microwave.

“You should have used flour,” someone told me.

“Well there was a small sack of flour on the counter, but it wasn’t a grease fire. The water worked,” I said in my own defense.

“Don’t use that microwave until you have it checked out.”

“Not a chance,” I said. “It’s slightly melted inside the door. Good thing I bought the extended warranty.” Or, it really didn’t matter since that was for two years instead of one. Guess that oven’s going back under that, “in case you are unhappy for any reason” clause.

The house was filled with a thick haze of smoke when it occurred to me that not one of my smoke detectors had gone off. Guess I forgot to change the batteries when we “fell back” this year. Better put that on my to-do list before I get my new, new microwave.

Copyright © December 2012 L. S. Fisher

http://earlyonset.blogspot.com

I Can See Clearly Now

One thing about losing your eyesight when you are young is that you don’t consider poor vision a sign of aging. Lately, I’ve been having some problems with my vision in addition to the nearsightedness that hit me when I was thirteen years old. At that time, I was blissfully unaware I had a problem until I couldn’t read the math problems the teacher wrote on the blackboard.

When I got my first pair of glasses—bifocals, no less—the most amazing thing to me was that I could see the individual leaves on trees. It was a real plus to be able to recognize people at a distance too. Yes, everything more than a few feet away was pretty much a blur.

Lately, I’ve been having vision problems again. This time, I’m having trouble seeing up close. I know you are thinking that un-huh, everyone seems to get farsighted as they get older—or else the arms aren’t long enough. I still have bifocals on my glasses, but I can see better without them when I’m trying to read Facebook on my cell phone, or even reading my book at night.

A few weeks ago, I had my eyes examined, and my prescription had changed slightly. Since it was such a small change, I decided to wait until after the first of the year so I could get new frames. In the meantime, and maybe even after getting my new prescription, it’s just easier to take off my glasses to see.

One night last week, I was lying on the bed, reading a post on Facebook. I took off my glasses to see better. I decided to respond to a post, and I just don’t type all that quickly on my cell phone. Eventually,  I shifted to a more comfortable position and finished. I picked up my glasses to put them back on and they were smashed flat. The earpieces lay flat against my forehead. Well, what the heck are you supposed to do with a pair of glasses like that?

For a few seconds, I thought about what it would to see the world as a blur again and not be able to recognize people. That is something that happens all the time in the Alzheimer’s world. Often, visual problems for someone with dementia isn’t eyesight, but rather a perception problem. Damage to the brain may keep them from being able to interpret what their eyes are seeing. Eyeglasses may not be the answer to this type of vision problem.

A person with Alzheimer’s can have several different vision problems. They may become lost because they cannot interpret the familiar landmarks their eyes see. A person with Alzheimer’s may have problems detecting motion. This difference is sometimes described as comparing how most of us view the world as a movie to a person with Alzheimer’s seeing a series of still photos. Another vision problem is with contrast. It may be confusing for a person with dementia if everything in the room is the same color. They may stumble over an object, that to their eyes, blends in with the background.

Knowing my vision problems could be solved with glasses, I rummaged around in the drawer where the old glasses live and found a gigantic pair from the late eighties. Nope, didn’t want to go there even if they are now “retro” and back in style. I finally found the most recent pair of glasses prior to the ones I pancaked and decided I didn’t like the way they looked. Eventually, I found a pair that I liked and put them on.

Whew. Don’t know what I would have done without glasses. I couldn’t have driven to work, or been able to do anything once I got there. Someone teased me saying that I could have just Duct-Taped the earpieces back on. Although that seemed ludicrous,  I have some photos of me taken when Jim was still in the service and we lived in Manhattan, Kansas, and I’m wearing a pair of glasses with one of the earpieces taped back on. That was during one of the periods when I wore contact lenses most of the time, and frankly, with a little baby and on army pay, it just wasn’t that important.

I think the most amazing thing about the old glasses is that I can read my Facebook just fine with them on. Isn’t that just a little bit weird? Since I smashed my glasses flat, I can see clearly now. Kind of makes me wonder if I want that new prescription after all.

Copyright © December 2012 by L.S. Fisher

http://earlyonset.blogspot.com 

Grief and Closure

My brother Donnie’s memorial service Friday was a reflection of his life and provided closure for our family. Our family pulled together to plan a tribute that combined displays of personal items and pictures with personal stories, often humorous.

Donnie had suffered from multiple strokes brought on by diabetes. Donnie had been in a nursing home for four years. During that time, his quality of life degenerated. He was often cantankerous and always hard to understand. The strokes had affected his speech and it was common to have to guess what he was saying—often wrong—or to ask him to repeat himself.

Although a different cause, in many ways, Donnie reminded me so much of Jim’s dementia journey. They both became dependent on others to take care of them as their conditions worsened. Donnie and Jim both had mothers who remained committed to caring for them. My mother-in-law didn’t miss many days looking after Jim, and my mother not only looked after Donnie, but also moved to town so that she was within a few blocks away from the nursing home.

A serious illness is hard on the entire family, but nothing can compare to a mother’s heartbreak of watching a child, no matter how old, develop a terminal condition. It just isn’t in the natural order of life for parents to outlive children. From the time a child is born, parents see that child as their legacy and someone they can love and cherish for the remainder of their lives.

Whether a loved one has Alzheimer’s, strokes, diabetes, cancer, or hundreds of other conditions, the grief is ongoing for family members. When you see someone fighting for life, or accepting that death is the only outcome, the grieving process begins long before his or her final breath. Grief in these circumstances is ambiguous, without an end in sight. Throughout the course of the illness, there is no closure, and if your loved one is unhappy or in pain, that distress becomes a part of your every waking moment.

Family members and caregivers often feel guilty that they are able to enjoy many of the things their loved one can’t. Yet, complete happiness or enjoyment is illusive when always in the back of your mind is the thought that you need to provide a level of companionship and comfort for your loved one who is in the nursing home, hospital, or perhaps still at home.

If you are a primary caregiver, your loved one is on your mind when you wake up in the morning and the last thing that crosses your mind when you go to sleep at night. You are constantly second guessing yourself as to whether you have done everything possible to make life as comfortable and fulfilling as you can. You may have left your loved one in the care of professionals, but you know they have others to tend to and you are afraid that something will fall through the cracks.

I know that after Jim wasn’t able to feed himself, or even get a drink of water on his own, it was something I worried about constantly. It eased my mind to drop by the nursing home each night after work and on weekends to make sure he was okay. If I wasn’t able to go, I knew that other family members would check on him.

I know that my mom will now be at loose ends and find herself feeling like she is forgetting something as she goes through this transition from being a primary caregiver to leading an ordinary life. It will be months before life returns to normal.

Caregiving is an all-consuming condition that affects body, mind, and spirit. It is a labor of love that becomes a way of life.

Copyright © December 2012 by L.S. Fisher

http://earlyonset.blogspot.com