Alzheimer’s Communication: The Sounds of Silence

Simon and Garfunkel’s song “The Sounds of Silence” always touched me. When I heard the cover performed by Disturbed, it made me hear the lyrics in a different context—a more urgent one. The same words performed in a different manner brought a new dimension to the song and made me pay attention to parts of it that just blended into the background before.

The haunting lyrics of “The Sounds of Silence” make me think of how Jim’s voice was silenced with aphasia during his years with dementia. His problems began with just a few jumbled words until his voice was stilled except for an occasional word. When a spoken word broke through the boundary of silence, it was as treasured as a rare jewel.

Mostly, Jim learned to talk without speaking, without words. His mannerisms became the clues that told us of his needs. His eyes communicated his pleasure, pain, joy, confusion, and a myriad of emotions.

Jim always said he knew me better than I knew myself, and I believe that was the key to our communication. Instinctively, he knew how to get his point across.

Communicating with a loved one who has Alzheimer’s requires some thought. When you consider that only about 7% of communication is from words, it opens many possibilities.

1.      Speak in simple, straight-forward sentences and give only one instruction at a time. If I ever asked Jim to do two things in one sentence, he only reacted to the second request.

2.      Patience is your friend! Allow time for a response. Don’t expect a quick response, or even an appropriate one.

3.      Use body language to get your point across. Your loved one will understand tone of voice and body language long beyond the time when they understand your words. Point, demonstrate, or use props. Also, watch your loved one’s body language. Restlessness, irritability, and other physical symptoms will alert you to their distress.

4.      Validate the emotions you see and hear. Their reaction to something might be completely different from yours, or even what you would expect theirs to be. They may re-live grief over and over, or may not acknowledge there is anything to grieve even when a close relative dies.

Throughout life, we communicate—from a baby’s cry, parenting, learning in school, to our last profound words. Life is more complicated and confusing when we lose our lifelong ability to communicate effectively.

Communication isn’t easy when your loved one has dementia, but putting in the effort to keep the lines of communication open will help your loved one and you maintain a happier relationship. Loving words, hugs, and smiles will convey your deepest feelings. When you listen with your heart, the sounds of silence will tell you everything you need to know.  

Copyright © December 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s War: A New Hope

At our family celebration, the day after Christmas, my grandson opened his Star Wars Lego’s. He is fascinated with all things Star Wars.

“Has he seen the new Star Wars movie,” I asked his dad.

“No, he hasn’t,” Rob replied.

I mentioned a photo posted on Facebook showing people lined up in front of a movie theater to see the original Star Wars in 1977. The caption read, “Your grandparents lined up to see the first Star Wars.”

“I remember when your dad and I took you and Eric to see Star Wars. We went to the drive-in to see it and you both fell asleep.” Of course, drive-in movies didn’t start until after dark and five- and seven-year-olds were up past their bedtimes. So, Jim and I were the only ones to see the entire movie.

“I don’t even remember it,” Rob said. He didn’t remember getting the toys for Christmas either: R2D2 and C3PO.

Of course, at the time, we thought there would only be one Star Wars movie. Instead, it was the series of movies that just kept on giving, and in 2015 gave again. What I didn’t know was that due to the prequels, the original Star Wars movie’s name was changed to Star Wars Episode IV A New Hope.

It seems odd that an original movie in a series would be renamed, “A new hope.” I find that intriguing for life as well. We all face so much adversity just living from day to day that we could use a little bit of “new” hope to keep us going.

When dealing with  Alzheimer’s, we may have years of sorrow, months of endurance, weeks of despair, and days of joy, but through it all, we never give up hope.

With Alzheimer’s, hope may be just hoping for a good day, hoping that the family pulls together, hope that there is something way better than this world. Hope for a miracle burrows deep within our hearts that the cure will be discovered in time to save our loved ones.

Now, we have a new hope. We have hope that this disease will be stamped out in our lifetime. Finally, our nation is pulling together to fund research in an unprecedented amount. We have declared war on Alzheimer’s.

On December 22, Harry Johns, CEO of the Alzheimer’s Association, said, “As we celebrate this momentum for our cause, we are, of course, deeply appreciative of our champions in Congress, members from both parties, who have made the advances we need much more likely with the historic funding increase announced last week. They have provided unprecedented leadership that will ultimately make a difference in millions and millions of lives.”

I’ll be making my sixteenth consecutive trip to the Alzheimer’s Advocacy Forum in April to help celebrate this new hope. Yes, an increase in funding is a great victory but our work isn’t done, and it won’t be, until Alzheimer’s is a curable disease.

A cure has been my hope for many, many years. My new hope is that someday I’ll go to D.C. and won’t have anything on my agenda except sight-seeing. Until then, I’ll wear my purple sash and continue to fight the war against Alzheimer’s.

Copyright © December 2015 by L.S. Fisher

http://earlyonset.blogspot.com.com

Merry, or Not So Merry?

Yesterday, I met the un-merriest checker ever at Walmart in Columbia. The light was lit that indicated the lane was open, so Harold and I put our items on the belt. We could see the checker, who was supposed to be on duty, deep in conversation with another woman. Finally, she spotted us as we patiently waited for someone to ring up our purchases.

She sauntered over, not saying a word or even giving a hint of a smile, and picked up the items, one by one, scanning. The total came up, she glared and nodded toward the credit card machine. I scanned the card, and she handed me the receipt. Then, she begrudgingly murmured “Thank you,” beneath her breath. Anyway, she said something that ended in “you.” I wouldn’t a hundred percent swear the first word was “thank.”

“Wow! She was rude,” I said just as soon as I was out of earshot. Yes, maybe I should have challenged her to her face, but I’m not passive-aggressive so I didn’t say it loud enough for her to overhear.

I know she had a voice because we interrupted her conversation. I don’t know what her problem was. She certainly wouldn’t be in contention for employee of the month.

It was disconcerting to see someone act that way in a retail business offers a high level of customer service, but some people just don’t do holidays well. People who have suffered a tragedy at Christmas time often endure rather than enjoy.

Holiday cheer and noise don’t bode well for people with dementia. A lot of  holiday chaos can send a person with Alzheimer’s into a tailspin.

Just a few suggestions to make the holidays easier if you have a loved one with dementia:

1.      Keep the celebrations simple. It is much better to have an intimate dinner than a huge family gathering. If it’s too hard for you to host the holiday celebration, ask someone else to host it.

2.      Be kind to yourself! If it’s too much to maintain all the traditions of holidays past, choose the ones that mean the most. Especially, if they are ones you can let your loved one share with you. Can your loved one ice the Christmas cookies?

3.      Take time for yourself. Find a few moments to indulge yourself. You could go to a Christmas program, schedule a relaxing massage, or go to a movie with a friend.

The person who can make your Christmas merry is you. Everyone else can jump through hoops trying to make it happen, but merriness doesn’t come from Walmart, it comes from the heart. You will find those who give you the gift of friendship, kindness, and love will help bring joy to your holiday.

Don’t let anyone steal your joy or cast guilt on you for not being able to do all that you did in the past. Fill the holidays with peace.

If you happen to go into the Columbia Walmart see a checker with a scowl on her face and a Grinch in her heart, tell her I said, “Merry Christmas!” She probably needs all the encouragement and cheer she can get.

  

Copyright © December 2015 by L.S. Fisher

http://earlyonset.blogspot.com.com

Aging Well Is All About Attitude

My Mom 2015--Aging Well

Have you ever noticed that some people seem old before their time? The reason some appear to be elderly could be due to physical appearance—they have wrinkles, shuffle when they walk—or more obviously they have turned into a grumpy old person.

Then, there is my mom. She will be 89 next month but has apparently been dipping her toes in the fountain of youth. She is healthy, active, and beautiful. 

Attitude is a key factor in whether your twilight years are enjoyable and fruitful or just an excuse to check out from life early. You see people struggle with the concept of retirement. It takes less effort and risk to keep on working. It isn’t always people who need the money either—they are afraid of not having enough to do or tie their self-worth to their career.

I took early retirement. I loved my job and had worked hard to succeed, but deep inside, I knew it was “time.” I was ready to turn the page on a new chapter—or perhaps open a new book. I faced retirement with excitement and without any regrets.

Recently, after exchanging pleasantries, a Walmart checker said she was glad her day was almost over and she could go home. “I have to work another five years before I can retire. That is if my health holds out.”

I swiped my credit card and said, “My doctor said she was glad I retired while I was in good health and could enjoy it. She sees so many people wait until they can’t work anymore.”

Retirement has been kind to me. I love waking up when I want to—at least most of the time. I choose the path to walk most days, or the comfy chair to sit in and read a book, or the TV show to watch, or the social event to attend. Oh, sometimes living with a farmer means getting dragged into all kinds of projects. Guess that counts as physical exercise and saves on a gym membership.

In order to live, you must embrace life. If you live everyday letting other people bring you down, you find yourself marking time, instead of making the most of it. Each day is a blessing. We never know what tomorrow or the next hour might bring. We choose to live, or we choose to endure a living death.

As we age, we are prone to developing medical conditions. Some of these can be brought on by lifestyle, genetics, environment, or a combination of all three. Alzheimer’s is one of the most dreaded conditions for the elderly. It is not a normal part of aging, but aging is the number one risk factor.

Researchers found a link between being negative about old age and developing Alzheimer’s disease. The Baltimore Longitudinal Study of Aging conducted a thirty-year study on aging. Later in the study, they used scans to track the size of the participants’ hippocampus which is primarily associated with memory and spatial navigation. The people who began the study with a negative outlook on aging had greater size reduction of the hippocampus than their more positive counterparts. Autopsies found negative people had significantly more plaques and tangles, the hallmarks of Alzheimer’s disease.

That’s good news for those of us who see the up-side of aging. We look forward to doing our own thing and taking advantage of those senior discounts. Who would have ever thought attitude could be so darned healthy?

It helps to put setbacks and failures in perspective. One thing is sure in life—even during the darkest hours, a lot of people in this world are facing greater hardships than I have ever known.

Hey, life is hard. It can be a lot harder for some than others, but giving up is not an option. It is heartening to see people who rise above adversity and take control of their own destiny.

It’s all about attitude. You’re only as old as your attitude lets you be. If you don't believe me, talk to my mom!

  

Copyright © December 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Letters About Alzheimer’s and Coconut Oil

I checked my Post Office box a few days ago and was pleasantly surprised to see two handwritten missives. In today’s atmosphere of mass mailings, junk mail, advertisements, and “or current occupant” mailings, it is almost mind-boggling to get one handwritten note, much less  an entire letter.

The first note was from one of our Walk to End Alzheimer’s sponsors. Jessica Snell and I had recently delivered T-shirts and a copy of Broken Road: Navigating the Alzheimer’s Labyrinth, a publication of my 2014 Early Onset Alzheimer’s blog posts. After thanking us for the shirts, she wrote, “It’s our pleasure to support this effort. I have forwarded your book to our social workers and case managers because I thought they would find it insightful.”

The other note was from a gentleman who began with “I have Alzheimer’s, and I read your book.”  He didn't mention which book he read. In addition to the first book I compiled and edited, Alzheimer’s Anthology of Unconditional Love, I have seven other Alzheimer’s books from my blog. “My wife said I have quit talking and reading. Today I read your entire book and I will read the Bible for two years.” He went on to talk about his coconut oil regimen. He said that one of the things I did not mention in my book is coconut oil and its benefits for Alzheimer’s.

He is not the first person to ask why I haven’t talked about the benefits of coconut oil. This is one alternative treatment I never tried on Jim, so I have no personal experience to share.

There is little scientific research on coconut oil and Alzheimer’s disease. A trial was supposed to be completed in September of this year, but for some reason it has been delayed and the results are not yet available. So, basically the jury is still out on the benefits, or a possible downside, of coconut oil therapy.

Coconut oil has its staunch supporters and anecdotal testimony. Some testimonials say their loved ones showed immediate improvement after taking daily doses of coconut oil for a short time.

Coconut oil contains more MCT (medium chain triglycerides) than any other food. MCT produces ketones, which some researchers believe can improve Alzheimer’s symptoms. Some very small studies showed improved cognitive function from MCT supplements. These studies used a supplement, not coconut oil.

A cautionary tale is that the safety of coconut oil in medicinal amounts is unknown. Its effect on cholesterol levels in high dosages is in dispute. Another consideration is that just because something is “natural” doesn’t mean it is safe when taken in abnormal amounts.

I know the frustration of waiting for an effective treatment for Alzheimer’s and I, too, used vitamin E supplements for Jim. I did clear the dosage with his physician and told every specialist he saw that he was taking it. None saw it as a problem.

I also take a couple of supplements—CoQ10 and MegaRed for joint problems. My physician knows I take these, and I’ve seen tremendous benefits from taking both. I took different levels until I found the lowest dosage that provided the best results. They don’t work for everyone, but I have confidence this regimen works for me.

Perhaps, it is the same with coconut oil. It may not work for everyone, but it may work for others. I do know primary caregivers will see even subtle changes in a loved one with dementia. We want the highest quality of life without causing any harm.

Once the larger studies are completed, science may come down on one side or the other in the coconut oil question. In the meantime, I would urge caution and consultation with a trusted medical professional before beginning any alternative treatment.   

 December 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Rainy Days Get Me Down

When it rains, pours, day after day, you begin to think that the earth is turning to water. All I can see from my window is rain in the yard, the fields, and every other low spot in between. The skies are a hundred shades of gray.

It’s hard to let my sunny disposition shine when Mother Nature doesn’t cooperate. I have found myself thinking too much and doing too little. I’ve vegged out on the couch two days straight. I watched show after show. My listless, do-nothing self became my dominant trait. It’s the rain’s fault.

The fall decorations were clustered together waiting for me to get up the energy to put them away. I dragged out a few of my snowmen, one of my small trees, and other Christmas odds and ends. But the bulk of the decorations are in the garage in storage tubs. Then, I turned on the tree and flipped on the TV to watch a Hallmark Christmas show. About ten minutes in, I realized I’d already seen it.

I went to bed and read until about midnight. I’ve had trouble sleeping since it started raining. The thinker keeps on thinking, and my normal slumber-inducing methods aren’t working. For two days, the negative past swooped down on me and washed away the positive thoughts like so much driftwood.

I woke up this morning out of sorts. Testy and grumpy. At least I found the energy to tackle a few tasks.

As I sat down to write my blog post, I noticed a message on Google Plus. I called my mom to share what was written. A person on the other side of the globe wrote to comment on my special Mom after reading “Under Control” in Chicken Soup for the Soul Thanks To My Mom.

The note said, “I was very impressed with your mother’s unconditional love for you and for Jim when she tirelessly took care of him. She was still mothering you despite the fact that you have become a mother yourself. Mothering is not something perfect women do, it is something that perfects women. If she is still alive, please convey my greetings to her and tell her that someone across the globe is very proud of her.”

Happily, I responded that my mom was in excellent health and would be turning 89 in January. I had originally titled the story “Spicy Chicken Sandwich,” but the editors at Chicken Soup renamed it, which is probably why they have bestsellers and I don’t. It is always awesome to be in a Chicken Soup book. The competition is fierce.

This story didn’t make it so much on my writing merit as it did the story itself. A story of how my family became my support system when I was a caregiver. They put up with me on sunny days and rainy days to help me keep Jim at home as long as possible. In “Under Control,” I focused on my mom, because you can only say so much in 1200 words. The story could have been about Jim’s mom, my kids, my sisters (in-law and birth), cousins, friends, neighbors, and eventually professional caregivers.

Caregivers have a lot of rainy days. It seems that down days come in clusters.

Rain, and bad days, may seem like they are going to last forty days and forty nights. Just about the time you think you should get started on that Ark, the rainbow brings the promise that everything is going to be all right. Next thing you know, the sun pops through and dares those dark clouds to show their frowning gray faces.

Yep. It’s still raining here in Missouri, but I’ve passed through the gloom and doom. I’m ready to tackle the world—tomorrow.

Copyright © November 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Welcome to My World

Volunteer Pumpkin

Still dressed in my PJ’s and first cup of coffee in hand, I headed toward my downstairs office yesterday morning. Harold had already forewarned me that as soon as the weather was warm enough we would return to painting fence posts and rails. I was determined to get an early start on my blog.

I sat in front of my PC trying to decide if I dare jump into writing my blog post, or if I should tackle my To-Do list first. I balanced the options in my head. If I worked on my To-Do list, I would be jumping from task to task spinning my figurative wheels in an attempt to multitask my multitasks. Hours would fly past while I whittled down my list only to add more. The list has a life of its own and is never ending.

Blog—a firm decision. I should have done it Friday, and here it was Tuesday so I was already four days behind. My quandary helped me decide on the title: “Welcome to My World.”

I placed my fingers on the keyboard and noticed my nail polish was worn and chipped. I would have done them Monday before the Alzheimer’s Board meeting, but the power was out when it was time to get ready and still out when I should have been done. Just as I had thrown everything in the car to go to the other house to shower, the power came back on.

I typed the title, and my phone sounded an alarm. Ignore it, my left brain said. Better look at it, my right brain replied.

Curiosity won. Hair appointment: 10 a.m. What? Well, that’s just dandy. Here it is 9:30, and I have to be dressed and in town in thirty minutes.

I abandoned my first cup of coffee and ran up the stairs knowing I’d need to be dressed in record time. Short of breath, I rushed into Harold’s office to tell him the good news. I threw on clothes and a little makeup. No need fussing with my hair—that’s my hairdresser’s job. No need for earrings—they would just get in the way.

After getting my hair cut and styled, I made a quick trip to the grocery store. As I put the groceries in the car, I saw the box of sponsor T-shirts in the backseat. It was a perfect day to deliver them, but too warm to leave groceries in the car. Besides, it was time to get home and paint. At least my hair looked great until I put on the paint mask and pulled the elastic to the back of my head.

So, seriously, welcome to my world. But then again, I think it’s everyone’s world now. I don’t hold the patent on crazy, busy days. Looking back on my life, it seems it has always been that way. When my kids were little, days blurred into weeks, into months, and years until they weren’t little anymore. Then, Jim became more dependent on me to provide his essential care. I became immersed in caring for him and added volunteering for the Alzheimer’s Association to the To-Do list.

As if working, being a caregiver, and volunteer work wasn’t enough, I went back to college. How did I do it? I have no clue. I just took it a day at a time. Heck, sometimes it was minute to minute.

I wonder how any of us do it. Do we take on more than humanly possible, or are we just making the most of the time we have allotted to us? Are we doing the things we love, or are we fulfilling obligations and pushing aside what we really want to do?

The bottom line is that it’s all about balance. I don’t want to be the kind of person that blows off obligations, but I don’t want to be the kind of person that only has time for obligations. I don’t mind standing in the freezing cold to ring the bell for Salvation Army any more than sitting in the comfort of my home writing a press release for scholarships.

Variety is as important as balance. This is how I’ve chosen to live, so I’m sharing, not complaining. I’ve been blessed in so many ways and am thankful for the world I’ve been given. I appreciate life’s special surprises, like the imperfect, but determined, volunteer pumpkin that grew in our yard this year. With a smile, I welcome you to my world.

Copyright © November 2015 by L.S. Fisher

http://earlyonset.blogspot

November Is Alzheimer's Awareness Month

Linda Fisher and Janna Worsham at Coffee with Congress

The month of November is a month of pumpkins, fall décor, thanksgiving, and the onslaught of the Christmas season. It is also Alzheimer’s Awareness Month.

I recently attended a “Coffee with Congress” at Provision Living Center in Columbia. I consider this as a “kickoff” to Alzheimer’s Awareness month.

It probably should have been called Coffee with Congress(ional) staff. Newbies to advocacy often become irate when they think they are going to talk to a member of Congress and instead talk to a staff member. I’ve seen perfectly capable advocates waste an opportunity to wholeheartedly share their message. Staff members are focused on what you have to say and they will share the relevant information with their boss.

In this instance, we met with three staff members. I had a great visit with Janna Worsham with Congresswoman Vicky Hartzler’s office, Sarah Barfield Graff with Senator Roy Blunt’s office, and Kyle Klemp with Senator Claire McCaskill’s office. We talked about funding for Alzheimer’s research and thanked them for their support.

We are proud of our Missouri group. Senator Blunt has requested $350 million additional funds for Alzheimer’s research. That is $50 million more than our ask. Senator McCaskill is the top ranking democrat on the special committee on aging. We saw her in action at the Alzheimer’s Public policy forum when she joined Chairman Susan Collins (R-Maine) to head a bipartisan hearing focusing on the financial, economic, and emotional challenges facing those with Alzheimer’s disease and their families.

In addition, I wanted to thank Congresswoman Vicky Hartzler for her unwavering support for Alzheimer’s research. One year when we brought a letter asking for a modest increase in Alzheimer’s research, she had already sent a request for $1 billion. She also uses Facebook, Twitter, and her newsletter to create her own storm of Alzheimer’s awareness. She and I connect on a personal level because we know the heartbreak of losing a loved one to dementia.

We also discussed the HOPE for Alzheimer’s Act and the asset the Act would be for families dealing with the disease. The Act is a common sense approach to providing Medicare coverage for comprehensive care planning services for newly diagnosed individuals and his or her caregiver, ensure that a diagnosis and care planning are included in medical records, and to require the Department of Health and Human Services to educate providers about the benefits.

As a caregiver, I kept track of Jim’s medical conditions—symptoms, diagnosis, tests run, side effects of prescription medications, and any information relative to his health. I took prints of the spreadsheet to every appointment. This kept him from being prescribed medications that he couldn’t take, duplication of tests, and helped me fill out all those darned forms. What happens to the people who don’t have someone to tell every specialist what others have done? The HOPE Act doesn’t have a “Score” which is an indication of what it would cost the government. Somehow, I think that instead of a cost to the government, it would save patients and the government by reducing duplication of services or writing prescriptions for medicine that has already created problems.

We heard caregiver stories including a care partner who was there with his lovely wife. He told of their problems with getting a diagnosis of early-onset Alzheimer’s. I shared some of my caregiving experiences. Several Greater Missouri Chapter staff and Board members were present to tell their stories and share their passion.

The meeting was informative, encouraging, and relevant. Those of us attending the Coffee with Congress left with a conviction to do everything within our power to end this horrible disease. We look forward to the day that Alzheimer’s becomes a manageable disorder, or better yet, when researchers find a cure.

#ENDALZ

Copyright © November 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Turn Back Time

Today we turned our clocks back one hour. My cell phone and computer both did it for me, but the dozen or so other clocks remain an hour ahead until they are changed.

I always remember which way to turn the clocks by “spring forward” for daylight saving time  and “fall back” to return to standard time. In one place, I saw it referred to as “turn back time.”

Turning back time is completely appropriate for another reason than standard time on November 1. This is the day after Halloween and the religious holiday of “All Saints Day” or as it is celebrated in some countries, “Day of the Dead.”

Is there any better way to turn back time than to remember those who have already passed away? It’s strange that I’ve never thought of this day as the Day of the Dead and never knew much about that tradition. On this day, millions of people will make annual pilgrimages to cemeteries and churches. Graves will be decorated with offerings of sugar skulls, flowers, or favorite food and beverages. Prayers are offered for the spiritual passing of loved ones.

Although I never celebrated the Day of the Dead, for some reason the past week has been an extreme time of reflection for me. On the drive back from my Alzheimer’s Board Meeting, I found myself reminiscing during the hour-long drive over and, again, on the way back.

Who would think something so simple as rolling dips in the road could bring back a vivid memory? Jim used to hit those dips fast enough that my stomach would feel funny. I drove past the house on Newland hill where we lived when our kids were little. I thought about them standing at the end of the driveway waiting for the school bus. I remembered Christmas, Halloween, and sitting around the dinner table. I remembered bits and pieces of the life we once had—before time marched on.

I passed the turnoff to Arrow Rock and thought of the good times we spent there. Remembered the time Jim wandered off during the festival and it took my sister, her husband, and me some scary moments before we found him.

Even before I drove past the cancer hospital, the drive alone made me think of taking my co-worker and friend, Diane, to Columbia for her treatments. That’s a double or triple memory. Diane’s favorite holiday was Halloween and it was with great sadness that the cancer took her on that day.

It is not unusual for a cemetery to evoke memories of loved ones buried there. When I passed Hopewell, my thoughts turned to Frank and Dorothy that we rented from when we lived on Newland Hill. I thought of Aunt Addie who wasn’t my aunt at all, but a wonderful woman who made the best of life in a wheelchair.

I’ve spent most of my life living within seven miles of where I live now. No wonder every curve, hill, and landmark made me think of the people who passed through my life, influencing me, making me the person I am today.

If we really turned back time today—not just for an hour, but could turn it back to a different time, it might not be the miracle that we would envision. Just think, one small change in our past would bring us to an entirely different destiny. We could drive ourselves insane with a thousand what ifs.

When a loved one dies, they take a piece of us with them, but they also leave part of themselves behind. We are left with memories, and we are changed. Remembering good times is a way to appreciate the gift of  love. A productive, happy life is based on what we were, how we cherish what we are now, and the audacity to believe the future will be filled with hope, happiness, and adventure.       

Copyright © November 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Once In a Lifetime

On Sunday, I was working at the Sedalia Business Women’s Chicken Dinner when I saw an elderly lady sitting all alone at a table. Unlike everyone else, she did not have a plate of chicken and trimmings in front of her.

She had a lost look, and instinctively I knew she had dementia. Concerned that she had wandered in and didn’t have a ticket, I walked over to her and asked, “Are you hungry for chicken?” I had already decided that if she didn’t have a ticket, I’d buy her lunch.

She smiled at me, tilted her hand back and forth, and murmured some indiscernible words. I smiled at her and walked to the ticket table.

“Do you know who that lady is?” I asked.

“No, but I think she has Alzheimer’s. Her husband is fixing her plate.”

I milled around, refilling drinks, cleaning trays and tables. Eventually, a lady walked up to me, read my nametag and asked, “Are you the Linda Fisher I saw in the paper that’s involved with the Alzheimer’s Association.” I told her I was. With tears in her eyes, she told me her husband had Alzheimer’s, and she had always wanted to meet me.

Later, another woman introduced herself to me to let me know a mutual friend had steered her toward my blog. Her husband, only in his sixties, had Alzheimer’s.

Eventually, I worked my way back to the table where the lady sat with her husband eating her chicken dinner. She spotted me and reached out to give me a hug. “I love you,” she said as she kissed me on the cheek. I hugged her back. When the hug ended, she kissed my hand.

Her husband smiled and said, “She thinks everyone is the Pope.”

I introduced myself and told him my husband had passed away at fifty-nine from dementia.

“Then, you understand what we are going through,” he said.

“Yes, I do,” I said. We chatted for a while about caregivers. He had just hired a new one. He was dismayed with the lack of help and support he had found. He told me he didn’t have a computer, I took his name and phone number to pass on to the Alzheimer’s Association.

It doesn’t matter where we are or what we are doing, the chances are good we will run into someone who has a personal connection with Alzheimer’s—people filled with questions and looking for answers. Caregivers muddle through the disease doing the best they can based on trial and error.

Unfortunately, when I look into the face of someone with Alzheimer’s or the faces of caregivers, I don’t have all the answers to their questions. All I can really do is offer hugs or hug back when I’m being hugged. Offer support and caring. Listen. Accept human flaws. Know that the worst response is indifference.

I’m thankful that these people shared their personal stories, and thankful for the opportunity to share a hug with a lovely lady who happens to have Alzheimer’s. I’m grateful for a glimpse into her life—learn she was once a teacher, know she has a life beyond the scope of the disease, and grateful she has a husband who fixes her plate and looks out for her well-being.

Alzheimer’s disease is as unpredictable as life itself. Each day is a new adventure and a new experience. Yesterday, I met a lovely lady named Alice, and just like in Lisa Genova’s book, she is still Alice. Thanks to her, a chicken dinner turned into a once in a lifetime experience of being mistaken for the Pope, and to share a few unforgettable moments with a loving, good-hearted woman named Alice.   

Copyright © October 2015 by L.S. Fisher

http://earlyonset.blogspot

One Big Fat Fib We All Tell

I was at Walmart yesterday and the lady checking my groceries asked, “How are you?”

“Fine,” I answered, “And how are you?”

Thank goodness, neither of us answered the question with great thought as to how things were really going. What if she had launched into a story about her husband’s cousin’s wife’s surgery with complete gory details while the person in line behind me tried to run over me with his cart?

About 99.9 percent of the time, if I ask how someone is, they reply, “Fine.” I noticed that Jim retained this “polite” conversational tool when his dementia was so advanced he could barely speak. If someone said, “How are you?” he would answer, “Fine.” He wasn’t able to verbalize just how awful his diagnosis was even if he’d wanted to share his state of being.

During the dark days when I was his caregiver, I never once answered a stranger’s polite inquiry with the truth. It was always the stock, and expected, answer.

Occasionally, you will get a more personal question, “How are you holding up,” from someone that knows the circumstances of your life. In that case, we might answer something like, “Things have been better.” Even with that hint of a problem, you might still go on your un-merry way to avoid sharing your problems.

I just saw a Wisdom Quote on Facebook that said, “The worst part about being strong is that no one ever asks if you’re okay. It is true that when someone is caring for a loved one with a serious illness, often people only ask about the person with the health problem. They don’t stop to consider that often the caregiver is exhausted physically and drained emotionally.

Most of us don’t like to be whiners. Plain and simple. Yet, there are those among us who love to whine. I do know certain people that I’ve learned the hard way to avoid the simple “How are you” question. These are the people who suffer the woe-is-me attitude if they have a hangnail. They will go on and on and on and on…then, when they have to “run” they throw off a casual “How are you” and walk away without waiting for an answer.

Even honest people tell this little white lie. I guess if you’re having a really bad day, it’s better than bursting into tears in the middle of the grocery store. No one wants to have a complete meltdown in public. Well, almost no one. Once again, there are those who try to get sympathy, or maybe a handout, from strangers.

It isn’t easy to avoid the pleasantries either. One day at a checkout, the young woman asked, “How are you?” I replied “Fine” as I tried to get the card to swipe. “I’m fine too,” she said. “Thanks for asking.” It sounded a whole lot like a rebuke to me for not continuing a pointless exchange. Or did she simply hear what she expected?

I plan to continue with social pleasantries, even when it’s a big fat fib—at least with strangers. With whiners, I might just say “hello” and avoid eye contact.

Copyright © October 2015 by L.S. Fisher

http://earlyonset.blogspot.com

October Fun: Ghost Tour

My grandkids are always wanting me to tell them spooky stories. I have several to choose from about my younger days when Jim and I managed to live in some scary places and had strange experiences galore.

It only stood to reason that when my mom, sisters, and I planned a girls’ mini-vacation at  Hannibal, a ghost tour would be on the agenda. In all my extensive travels, I had never visited the town that served as Mark Twain’s inspiration for Tom Sawyer.

We arrived in Hannibal at a good time to take a trolley tour to get the lay of the land. While we were waiting, a “Ghost Tour” sign caught our attention. We strolled inside and signed up for a tour at 7:00 p.m.

During the day, we rode the riverboat and still squeezed in a little shopping. My sisters and I bought vintage hats to wear on the ghost tour.

Our ghost tour guides, Ken and Lisa, asked whether we were more interested in history or ghosts. Our preference was both, so we heard about Hannibal’s rich history and haunted tales. During the tour, we stopped in front of several bed and breakfasts, an old church, and the Rockcliffe Mansion. Ken and Lisa had lived in the mansion and told us chilling stories of their adventures. Doors slamming and footsteps on the stairs would be enough to make me hide my head beneath the covers.

The mansion’s history is unusual. In its time it was the biggest and most opulent mansion in Missouri. Lumber baron John J. Cruikshank chose a spot already occupied by a mansion. He moved the offending house next door and eventually his daughter lived there. After Cruikshank died, his widow moved from Rockcliffe to her daughter’s home leaving nearly all her belongings behind. 

All that's left of the maps.

Rockcliffe  remained abandoned for 43 years, its windows broken out, and the rite-of-passage for teenagers was to go into the house to the third floor and rip off a piece of the map in the children’s room. I’m sure it was considered a sign of bravery to accomplish this route without freaking out. Although, the mansion’s ghosts are considered to be friendly, Casper-type ghosts, I decided that I wouldn’t want to spend the night there.

Our tour ended with a trip to the cemetery, spooky to be sure. Although I’d visited a cemetery on a previous ghost tour, it was not like this one. The other cemetery was in the middle of Boston and well-lighted. This cemetery was on the edge of town, no lights, and although it had been cleaned up, it was still an old, old cemetery with toppled stones around the fringes. We were furnished with divining rods and tiny two-inch flashlights. I wouldn’t touch the rods after we were instructed how to get yes and no answers because it reminded me of a Ouija board pointer. I’ve had some hair-raising experiences with Ouija boards and didn’t want to be calling up any spirits without Ghost Busters on speed dial.

The next day, after visiting the museum and Twain’s boyhood home, we toured Rockcliffe.  You’ve heard about pictures that have eyes that follow you no matter where you are. Well, there’s one of John Cruikshank that does that. I’m not ashamed to say that’s just a little bit creepy. After seeing the bedrooms, I’m sure I would not have had a restful night had we chosen to stay there. Old clothes, hats, and shoes in the closet made me think the lady of the manor might return to change her clothing.

To finish our journey, we drove into Illinois looking for Burbridge Cemetery where several of our ancestors are buried. We got lost. We finally asked a local and he directed us to it. My sister consulted her genealogy book and we found several graves listed in the book. We took photos and headed for home.

It is always fun to spend time with family. It’s something most of us put aside for the busy, mundane things we do in life. Sometimes, it helps to take a step back and think about how after we’re gone, a stone may be the only visible reminder of our time on earth. Someday, that stone may be part of a ghost tour and a tourist with a divining rod may be asking us yes and no questions. Wouldn’t it be so much fun to groan loudly and say, “Get your big fat foot off my head!”

Copyright © October 2015 by L.S. Fisher

http://earlyonset.blogspot.com

So You Had a Bad Day

Last week during the full-blood-super-moon eclipse, I discovered that I wasn’t my normal self. I woke up at 10:30 a.m. after an extraordinarily long night of nightmare infested slumber. To say I got up on the wrong side of the bed is an understatement—it was more like I got up on the wrong side of the house. Cranky, headachy, and on the verge of tears, it’s no wonder my husband retreated to his office for the day. His main goal of the day was to steer clear of the crazy woman in the kitchen.

There was no explanation for the way I felt. It just was, and it wasn’t going away. It all boiled down to simply having a bad day.

What causes us to have a bad day? Most of the time, it is because of external problems beyond our control that make us nervous or unhappy. Too often, we let the behavior of others ruin an otherwise good day. Someone makes a hurtful or disparaging remark that sinks its ugly roots into our self-esteem and the worry of its validity gnaws at our self-worth. Some bad days, like the one I had, are internal. An unsettling night that spilled over into the daylight.

Anyone can have a bad day, but people with dementia have more than their share. When you take into account their daily wrestling match with confusion and the other symptoms Alzheimer’s causes, it helps you understand how bad days can be plentiful.

The unfortunate nature of a bad day is that it can be contagious. When the person with dementia has a bad day, the caregiver has a bad day too.

So what the heck can you do about that? It’s hard enough to deal with yourself, much less someone else, when emotions are out of whack, common sense is on vacation, and patience abandoned ship. It’s time to give yourself a time-out.

Do something you really love to do, even if you can spare only a few minutes. Some suggestions: a half-hour comedy (I can’t possibly stay depressed watching the Golden Girls), read a magazine or a chapter in a good book, go for a walk, call your mom or a good friend, or bake cookies.

After your time-out, take a few deep breaths, and if you baked cookies, now would be a good time to have some with a glass of milk. Now you are ready to stay calm—the number one method for handling your loved one’s bad day. Hopefully, you’ve regained your ability to be patient, because you will need an abundance of it.

A good rule to remember is that what worked yesterday may not work today, so be flexible. Distraction is your friend. If your loved one is crying, or in a really bad mood, you may want to scoop up an ice cream cone. One thing that always worked with Jim was taking a drive. He loved getting in the car and heading down the road. An even better trip for him was when we stopped by DQ for a milkshake.

When a person with dementia has a bad day, it shows in his behavior. Though easier said than done, your best response is to address the emotion rather than the behavior.

There is no one cause for a bad day and there isn’t one solution. I think my bad day was the result of a bad night and, of course, the full moon. Probably the real reason is that I’m human with human emotions. So, I had a bad day. It wasn’t the first, and rest assured, it won’t be the last.

Copyright © October 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Family Matters

Jimmy, Tommy, Mitchell, Roberta, Linda, Mom, Terri

On a cold February night, just as we were going to bed, I casually mentioned to Harold that this was my year to host our family get-together. We used to gather on Thanksgiving at my mom and dad’s house.

After Dad died, and Mom sold the house to my brother Mitchell, we converged on them for several years until we made a change with tradition. We decided to pass the hosting around by going from oldest to youngest and decided to meet in September when the weather was better.

“When were you going to tell me this?” he asked.

“Oh, about August,” I replied. Harold is the planner. I, on the other hand, am a seat-of-the-pants type person.

Well, he wasn’t having any of that. After a barrage of questions about logistics, I finally suggested we have the event at the park so we wouldn’t have to find tables, chairs, etc. that he was worrying about seven months ahead of time.

By March, we had rented the shelter at the park and worked on a list of things to do. In addition to the place, the host family provides the meat, drinks, and table service.

The reunion was Sunday, and we couldn’t have asked for better weather. We were up at 6:00 a.m., and Harold was in drill-sergeant mode. Before I could get a cup of coffee, he was slicing up the pork loin we’d cooked the day before, and one of the huge hams he had bought for the occasion.

By the time we got the first ham in the roaster oven it was full. Harold was still fretting that we weren’t going to have enough meat. “That’s plenty,” I said. After all, Stacey was bringing two turkey breasts.

“This isn’t like the Fisher reunion,” I said. The Fisher reunion is for anyone with the last name, but this reunion is for our immediate family, children, grandchildren, and great-grandchildren. “We usually have about thirty people, not a hundred.”

He finally settled on cooking an additional three-pound ham, just in case. Then we fixed gallons and gallons of tea. Thank goodness, Rob came by with his pickup to help us load everything into his truck and our Tahoe.

On the way to town, I began to feel the excitement. Until then, I’d been too busy. I love spending time with my family, and don’t see them as often as I should.

Both my sons were there and my two youngest grandchildren. My two oldest grandkids work on weekends, but Whitney would be coming by on her lunch hour.

Rob set up a PC to play a CD made from a video of a Capps family Thanksgiving from the early 1990’s. Mom was taking a turkey out of the oven, and my husband Jim was running the video camera.

After everyone found the right shelter, we decided to go ahead and start eating. My brother Mitchell had not arrived, but was on his way.  Tommy asked a short blessing. “Wow, that must be the shortest blessing you’ve ever done,” I said.

“He’s still going on the videotape,” someone said. Sure enough, the CD was still rolling and Tommy was still asking the blessing. In all fairness, we used to update everyone on our family, and he had the largest family.

We visited and took photos of the brothers, sisters, and our mom. Marshall wasn’t able to come this year and our brother Donnie passed away Thanksgiving eve in 2012.

The time just flew by, and before it seemed possible, people were leaving. It had been a beautiful day to spend with people I love. Of all things in life, family matters the most.

Copyright © September 2015 by L.S. Fisher

http://earlyonset.blogspot

On the Inside

Our Walk to End Alzheimer’s was Saturday. Nearly a full year of preparation all came together for a flawless event. The one thing you can’t really control is the weather, but it cooperated in a big way. The day was gorgeous, and for once, I didn’t have butterflies worrying about whether it was going to rain…or be so hot that someone could have heatstroke.

Before the Walk, we determined the eldest walker (Uncle Johnny) and the youngest, Bella Howard, a sweet baby wearing a Fairview shirt. The best individual fundraiser, Jessica Snell, was announced. Trophies were awarded to Sylvia G. Thompson for best fundraising and largest team.

Jessie from the Greater Missouri Chapter surprised me with an award. She pulled out a photo collage that immediately brought back memories. She asked me to say a few words.

“They caught me off guard,” I said. Then, I became so choked up, I had to pause before I could continue. Normally, when I speak, I prepare myself mentally to keep the emotions on the inside. After a brief pause, I was able to thank the wonderful walkers and teams that have supported our efforts throughout the years. Then, I told everyone how important the Walk was to me personally and how it helped me through the tough times. It gave me a focus and a way to feel good about helping put an end to this awful disease.

The extra bonus for the day was that the weather was also perfect for the other two outdoor events I planned to attend. At three o’clock, my great-niece was married in the same locale where we held the walk—the Highway Gardens on the Fairgrounds.

Larry Cooper

The final event to end my day was to watch “Changed By Grace” perform at the Sedalia Rockin’ for Jesus show. Besides the spiritual implications of the evening, two of the band members happen to be my nephews Mike Munsterman and Larry Cooper.  

Mike Munsterman

I thoroughly enjoyed their uplifting performance and their testimonies. 

A song that really made me think about life was one  Larry wrote, “On the Inside.” The song is about how we work to have all the material possessions, but then fall into the trap of devoting our lives to gaining even more worldly goods. Looking successful on the outside does not necessarily make a person happy or feel good about how he got to that point in life. In the song, Larry shares the importance of living life in such a way that a person feels good on the inside.   

Mike, too, has found a way to feel good on the inside. He has put his life back together after losing his wife Krystal. He has made a positive impact on the homeless through Krystal’s Dream. Mike has traveled far and wide to provide shoes and socks to those who have fallen on hard times. Through his mission, he has taken a tragedy that could have broken him, and turned it into action to help others.

To feel good on the inside you have to find that sweet spot in your soul where love, peace, and spirituality come to life. The important times in our lives are the heart moments spent doing what we love and being with those we love.

Is there anything better than living life in such a manner that it really does make us feel good on the inside? Sometimes we just need to put aside the negative thoughts and pressures that daily life brings and focus on the positive, happy times that make us smile.    

Copyright © September 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Don’t Let the Rain Dampen Your Spirits

In “The Rainy Day” Henry Wadsworth Longfellow said, “Into each life some rain must fall.”  At times we pray for rain, the refreshing life-essential drops that come from the heavens to end droughts. Other times, when we have an important outdoor activity we don’t want it to rain. We wonder why it can’t hold off for just a while longer. Is that too much to ask?

Labor Day is our day for our big Walk to End Alzheimer’s fundraiser for Jim’s team. This was our 17^th year to do the “traffic stop.” It seems the day is usually unbearably hot, and this year looked to be more of the same. Then, the forecast called for heat and a chance of rain.

“Will you still do the stop if it rains, or will you reschedule,” my niece asked the day before.

“We can’t reschedule it. If it rains, we’ll stand in the rain. If we have a thunderstorm, we’ll wait it out in our cars,” I said. In all the previous years, we only had one rainy day. It was a blessing in disguise because the intermittent, gentle showers made for a cooler day.

As we began setting up our signs, a few gentle drops fell. Not bad, I thought. Suppose to last only a short while and move out. Soon, the rain began falling a little harder, and eventually, those of us who brought umbrellas stood beneath them. Only Shelly and Chris didn’t have umbrellas. Chris was wearing a raincoat, but Shelly just stood alongside the road with her collection can without protection against the rain that stalled over our heads.

I glanced down the street and saw a lady coming out of her house carrying a smiley-face umbrella. She talked to Shelly for a few minutes and handed her the umbrella. This woman had lived in the house for eleven years and noticed us every year and admired our tenacity to continue through the hot days in the past. She gave Shelly a donation and insisted she take the umbrella. The woman told Shelly that her sister was only in her fifties and had been diagnosed with early-onset Alzheimer’s.

The relentless rain fell on our “parade” until the last half hour. Water was running down the ditches, and the umbrellas didn’t keep the rain from soaking us. I didn’t mind the wet shirt and capris nearly as much as sloshing around with wet socks and shoes. Hey, it was still better than one-hundred degree heat. We didn’t let the rain dampen our spirits.  

In his poem, Longfellow isn’t speaking of physical rain. He is speaking of the dark times when we cling to the past and “days are dark and dreary.” It makes me think of a conversation I had with a caregiver recently. She was battling depression and felt overwhelmed taking care of her husband who has Alzheimer’s. Yet, while we talked, I could tell she had the courage and indomitable spirit to keep on keeping on.

We all deal with our own personal rainy days. Sometimes they are gentle showers, and we can just shrug them off. We can even soldier through those steady downpours without much ado. Then there are those times when the wind is gusting, the thunder is booming, and a torrential downpour flash floods all over our last ray of optimism.

Before you let rainy, turbulent times dampen your spirits, remember the sun is still above those pesky clouds. Sunshine after a rain is glorious; rays beam down like the word of God, and the rainbow promises better days to come.

Copyright © September 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Just Like the Good Old Days

A couple of days ago, Harold popped a big bowl of popcorn and we settled in front of the T.V. to watch the old episodes of Castle recorded on our DVR. I pushed the “on” button, and nothing happened. After pushing on/off/select numerous times, the most I could get on the T.V. was “no signal.”

Harold tried to reset the satellite receiver without success, so it was time to call DISH. After a half hour of trying this, selecting that, and retrying to acquire a signal, a heavily accented voice said they would be mailing us a new receiver.

After some tough negotiations, Harold convinced them they needed to send a repair person to come out and set up the new receiver. They will be here Tuesday. So without any other kind of reception, we are without a T.V.

Being without a T.V. isn’t so bad. It reminded me of the good old days when we didn’t watch T.V. in the summer because all programs were reruns. So what did we do without all the extensive programming on T.V.? Well, we read books and spent time outside. Thank goodness, I had a book on my Kindle to read, and I had gone a little overboard at Books-A-Million when I was in Branson.

The spending time outside has worked well. Friday, I spent the day with my mom and sister. We visited, ate at Country Kitchen. I didn’t miss T.V. at all. The real acid test was Saturday. As it turned out, my major complaint with Saturday was that there wasn’t enough time to take a break. We were up early and fixed a big breakfast—different from our routine of coffee and bagel in front of the T.V.  After a day of mowing, yard work, and going to town, the day was over, and I hadn’t gotten a single thing marked off my personal task list. Determined to at least get one thing checked off, I worked until nearly midnight. T.V.? What’s that?

This morning, I dragged myself out of bed for early church services. I wore one of my purple Alzheimer’s shirts and picked up a copy of Broken Road: Navigating the Alzheimer’s Labyrinth to give to Pastor Jim for being the inspiration for some of my blog posts.

As I walked into the sanctuary, they had me choose a rock. “You’ll need it during the service,” was the explanation. I was hopeful we weren’t going to “stone” anyone for his or her transgressions.

I go to contemporary services at the Celebration Center. We have a band and the lyrics to our songs are displayed on a screen.  One of our pastors, Nick, brought a message about the traditional Methodist Hymnal and the “rules” for singing the songs. The rules included learning the tunes, singing them exactly as they are written, everyone should sing (take up your cross and bear it, if necessary), sing lustfully (not as half-dead or asleep), yet modestly without destroying the harmony, keep time and sing with the leading voices, and most of all sing spiritually.

Hymnals have the traditional hymns that we sang back in the “good old days.” After the message from 1 Samuel about a stone he called Ebenezer, we sang a traditional hymn, “Come, Thou Fount of Every Blessing.”  The women sang the melody and the men repeated a line. It was really quite beautiful, and I think John Wesley would have been proud.

One of the lines in the song is, “Here I raise my Ebenezer.” As we sang the song, we came forward in the same manner as communion and placed our rocks on the altar. It was a touching moment that made me feel like I’d taken a step back to another, simpler time.

Maybe the “good old days” weren’t always good, but something about them tugs at the heart. It’s the place of our memories and the roots of our traditions. Those were days when we were young and full of hope.

Taking a step back for a few days is a welcome relief. Soon, very soon, I’ll be ready to return to watching my favorite programs, but for now—I’m doing just fine without T.V.

Copyright © August 2015 by L.S. Fisher

http://earlyonset.blogspot.com