Monday, January 25, 2016

The Key to Comfort

A few weeks ago my sister and I were discussing weight. She had been thin most of her life and she used to say to me, “Gaining weight is just as hard for me as losing it is for you.”

“Maybe so,” I admitted, “but it would be a heck of a lot more fun.”

After she gained weight, she said she felt a lot better, but was hesitant to buy new clothing because her sizes kept changing. Leggings turned out to be a great choice because they, well, stretched—a lot.

Since I’ve retired, my wardrobe changed dramatically.

“If I’m not going anywhere, I might just stay in my PJ’s all day,” I admitted to my sister. “If I feel like dressing up a bit, I put on sweatpants. If I’m going somewhere, I’ll wear my stretchy jeans.”

Recently I bought a pair of Jeggings. I discovered they had the comfort of leggings, but looked more like jeans. Ahh. The best of both worlds.

Being comfortable not only kept me from stressing over every darned holiday pound I gained, it actually prevented surgery. That’s a bold statement, but from someone who developed knee problems over thirty years ago, I stand behind every word.

By 2012, my knees had gotten so bad that I had a cortisone shot before I went on vacation to make sure I wasn’t hobbling around. The shot provided some temporary relief and the possibility of surgery was postponed.

As we went into winter that year, I bought two pair of comfortable boots with low heels. The boots turned out to be a fortunate purchase because that winter brought weeks and weeks of snow.  After about a month, I noticed that my knees felt better than they had in years. Wearing the low-heeled, comfortable boots had saved me from surgery.

Why did I go through life wearing uncomfortable shoes, or clothing, because they were fashionable? Was it vanity, or just what I thought was expected. After all, I never wore my PJ’s to the store, or my sweatpants to a conference.

Even people who always dressed for comfort sometimes have to make adjustments. Jim was always most comfortable wearing his 501 Levis. As his dementia advanced, he needed assistance with dressing, and I couldn’t quite handle the button fly. We advanced to zip up jeans, and that worked for a while.

When Jim went into long-term care, it was much easier for him to dress in sweatpants and a Kansas City Chief’s T-shirt. Dressing for comfort had an additional benefit for Jim. He didn’t seem to need much sleep and would walk day and night until he was exhausted enough to sit in a comfortable chair or lie down on a couch to take a nap. His constant pacing meant he needed comfortable shoes. I bought him good athletic shoes and had to replace them on a regular basis.

I found out comfort wasn’t only important with Jim’s clothing. It extended to holding hands, hugs, and providing companionship. Comfort was key to Jim’s physical and emotional wellbeing. Yes, I discovered the most important part of Jim’s body that needed comfort was his heart.

Copyright © January 2016 by L.S. Fisher

Thursday, January 21, 2016

Interview with Linda Fisher - Early Onset Alzheimer's Blog - Best Health Blog Contestant

1) What inspired you to start blogging?

My husband, Jim, developed dementia at 49 years old. After a series of tests, the doctor told us Jim had dementia of the Alzheimer's type. That was the beginning of our Alzheimer’s journey. We learned that nothing would slow down the progression of the disease and that it was 100% fatal. Jim died in 2005, ten years after the diagnosis.

Writing was part of my healing process after Jim passed away. Originally, I intended to write a memoir based on my tape-recorded journal, but opted to share my experiences through a blog instead. A blog is an ongoing interaction that breathes life into the stories and experiences of being a caregiver. My goals are to encourage, inspire, and inform. Early Onset Alzheimer’s blog reflects my desire to live life to the fullest and to find humor in everyday life.

2) What would you do with the money if you won?

I would use the money to help pay expenses to the Alzheimer's Advocacy Forum in Washington, D.C. in April. I'm already registered for the 2016 Forum--my sixteenth consecutive trip to advocate for Alzheimer's research and programs to help care partners cope. Each year, I join hundreds of other advocates as we don our purple "beauty queen" sashes and storm Capitol Hill.

3) What has been your best blogging moment?

Since I began Early Onset Alzheimer’s blog in 2008, my best blogging moment(s) are when someone tells me they learned something helpful or found encouragement from one of my posts. I think my most thrilling moment was when the national Alzheimer's Association featured a story about Jim and me in their online newsletter with a link to my blog. That was the first time that more than 100 people visited my blog in one day. After I first entered Healthline’s contest  in 2012,  my blog has averaged more than  100 daily views and at times as many as 500 visitors in one day. This inspires me to keep on blogging.

Thank you, Healthline, for giving us bloggers this excellent opportunity to reach a wider audience.

Note: Early Onset Alzheimer's blog won 2nd in Healthline's Best Health Blog Contest. 

Copyright © January 2016 by L.S. Fisher

Wednesday, January 20, 2016

No matter how lost you are, music can bring you home

“No matter how lost you are, music can bring you home.” ~ Unattributed

Music touches our souls and brings back memories. Jim called playing his guitar therapy. And it was. He kept the guitar on a stand in our kitchen. Each morning he picked it up, looked out the window at his mother’s house, the road, and cattle in the pasture, then played a few tunes. He’d drink a cup of hot coffee—no lukewarm stuff for him—and sing whatever country or cowboy song was on his mind, or heart, that morning.

From the time he was a boy and learned how to play the mandolin, the only instrument his tiny fingers could reach, until the day he died, music was in his soul. One of the saddest parts of dementia was watching Jim lose his ability to play his guitar and sing his songs. To this day when I hear one of his favorite songs, memories of Jim, sitting in the kitchen strumming his guitar, soothes my soul.

Early Onset Alzheimer’s blog is a tribute to Jim, our journey, and a way to reach out to others who know the heartbreaking loss of dementia. Healthline’s contest is nearing an end. The final tally will come in a few days, but I want you to know that we are already winners. Whether we win the top prize, or not, we’ve made our voices heard all over the Internet. Spread the word, Alzheimer’s is a priority to us, and we want to end it NOW.

Copyright © January 2016 by L.S. Fisher

Monday, January 18, 2016

Work in Progress

We writers often refer to our “work in progress” or WIP for short. When we speak these words, often in a self-depreciating way, we are referring to our current project. I’ve often said my attention span is too short to write a novel. Oh, I’ve started a few all right, even completed a draft of a mystery novel, but according to writing experts my WIP has a major flaw—the heroine turns out to be a villain.

I don’t believe a story should be predictable. I watched a movie this afternoon and within the first ten minutes I knew how the story was going to end. Of course, it took two hours before it got there, but it ended just as I knew it would. After all, it was a Hallmark movie and people have expectations. They want the movie to end with a sigh of contentment, not with a “I sure didn’t see that coming” response.

Real life isn’t anything like the movies with the predictable happy ending. It isn’t even like a well-written book that ties up all the loose ends. Life is unpredictable and more like looking into a kaleidoscope with ever-changing patterns.

When we’re young, we all have expectations as to what we want to be when we grow up. It was hard for me to accept that being a princess wasn’t going to happen.

After the reality of adulthood sets in, we still have things we want to do, places we want to see, and goals we want to reach. Some of us have a bucket list. It may not be written down. It may reside merely as a niggling sense of incompleteness in our lives. Unfinished business.

Life happens and plans change. Then change again. As we age, things either come together or they fall apart. Or both. Everything might be perking along without a single issue, and then life slaps us in the face or bonks us on the head.

The defining moment of change in my life was when Jim developed dementia. We had plans that didn’t include life as we knew it coming to a screeching halt. We had retirement dreams that involved travel flush with mountain time, southwest desert time, and, knowing Jim, long drives revisiting his childhood places. I never had a chance to see the bridge they lived under in Texas where Lyndon Johnson visited them, lending a helping hand.

Our dreams were sabotaged by a rare type of younger onset dementia. Jim changed from the decisive, intelligent, jokester, master musician, and loving, warm man he had been into a person dependent on others for his most basic care.

Being a primary caregiver is on-the-job training for a job no one wants. It isn’t that we don’t want to take care of our loved ones, it’s that we would give anything if the circumstances did not exist. We wish we could rewrite life’s story. Edit out the hurt and pain. Replace hard times with good times. Create that happy ending.

Dementia brings a life fraught with adversity: sadness, unfathomable challenges, and sometimes full blown anger at a disease that is robbing us of a person we love. Adversity is a two-sided mirror. If we look at life’s challenges one way, we see defeat. If we look at adversity another way, we see strength. Most of us will dig deep and find strength we never even suspected we had.

Odd as it may seem, adversity determines what we become. It is what gives us the passion to adopt a mission in life. Alzheimer’s wasn’t even on my radar, but taking up the purple banner has defined who I am. It has made me the person I am today—an advocate, Alzheimer’s volunteer, and blogger.

Writing has always been as important to me as breathing. The first time I put pen to paper was to write a story about a pet pig in elementary school. No one would want me to suffocate beneath the weight of an unfinished novel, my work without progress. I should have written it until “The End” was at the bottom of the last page, but I didn’t.

On the other hand, a blog is an endless work in progress, just like I am. A match made in blog heaven.

Copyright © January 2016 by L.S. Fisher

Tuesday, January 12, 2016

Alzheimer’s Care and Support

I became a volunteer for the Alzheimer’s Association because of the support they gave to me when I needed it. I have been known to refer to myself as the Alzheimer’s poster child.

My first contact with the local Alzheimer’s Association Chapter was in the form of a desperate call to their “Help” line before we even had a diagnosis. “I don’t know if you can help me because we don’t know what’s causing my husband’s problems,” I said.

Penney Braun, the executive director, was the person who answered the phone that day. She assured me that I had called the right place. My relationship with the Greater Missouri Chapter began with a friendly, concerned voice on the phone and it continues to this day.

Thinking back, I know there’s no way to remember everything the Chapter did for me, but I’d like to mention a few of them.

During the Early Stages: They provided caregiving training. I was starting with zero knowledge about dementia. I attended several training programs including one for nursing home staff. I learned important tips about managing behavior, providing personal care, how to reduce stress (both mine and his), and how to provide the correct amount of assistance. We learned how important it was to get our legal affairs in order.

During the Middle Stages: The Alzheimer’s Association helped me by providing respite care. I was in my forties and quitting my job was not an option. Because we were young, we did not qualify for senior services that would have helped us. Through support group, I learned what to look for in a nursing home and that it was a good idea to get Jim’s name on a waiting list. When I realized a home cost more than I earned, I learned about division of assets.

During the Late Stages: My friends at the Chapter office were there to support me when I had to put Jim in a home. They gave me advice when he went through a failure to thrive and had trouble swallowing. Throughout the years of dementia, my concern was that the disease could be hereditary. We had gone through such a long process to get any kind of diagnosis and still were not certain what he had. Once again, the Alzheimer’s Association Chapter staff came through for me. They made all the arrangements for a brain autopsy after his death. They went above and beyond by applying for a scholarship on our behalf to pay for it.

Through it all, the Chapter was by my side. Several members of the staff came from Columbia for Jim’s services. They were there for me from the beginning to the end…and beyond.

Coping with the aftermath of a decade of being a primary caregiver for a loved one with a degenerative brain disease leaves a special kind of emptiness. My entire routine was different, my purpose was gone.

I’ve found new purpose, and you might even call me a woman on a mission. I want to do everything in my power to end this disease. As an advocate, I make my trips to Washington, D.C., and to Jefferson City to help make this a better world for those with Alzheimer’s until it becomes a world without Alzheimer’s.

Copyright © January 2016 by L.S. Fisher

Tuesday, January 5, 2016

Alzheimer’s: A Process of Unlearning

On Sunday morning, Pastor Jim told us about a NASA study to test creativity. A group of five-year-old children were given the same test devised for NASA to help them in finding creative engineers and scientists. The little children tested at 98%. Retested at the age of ten, scores were at 30%. At fifteen, their scores plummeted to 12%. The same test was given to adults, who scored a measly 2%.

Between the ages of childhood and adulthood, an unlearning process had stripped the test subjects of their innate creativity. Children use their imaginations until adults interfere. My granddaughter’s kindergarten teacher labeled her “immature” because she liked to pretend she was a puppy. Immature in kindergarten? I would hope so!

So we know that if we do nothing to fire our imagination, we unlearn creativity. This made me think about what my mom said one day about Jim. She said, “He’s unlearning.”

When you ask most people about Alzheimer’s the first thing they think of is memory loss. Memory loss is only the beginning. People with dementia unlearn. Skills and talents learned throughout a lifetime are steadily, progressively unlearned.

  1. Jim unlearned how to tie his shoes. I bought him shoes with Velcro. Then he forgot how to choose his clothes each day. I laid them out each morning. We worked through other problems: he unlearned how to button his 501 Levis, how to put his belt through the loops, or that buttons should line up with the buttonholes.
  2. Jim unlearned how to have a conversation. He couldn’t tell his tall tales anymore. Then he couldn’t remember the names of objects or even names of close friends and relatives. Our long conversations ended, and we spent our days in silence.
  3. He unlearned how to play his guitar and couldn’t remember lyrics to songs he’d known practically his entire life. I think this was the hardest part for both of us. His music had always been a big part of his life, and it gradually faded away to nothing.
  4. At the end, he forgot how to feed himself. He forgot how to swallow liquids without choking. He forgot how to walk. He’d unlearned a lifetime of learning.
Of all the things he unlearned, he didn’t forget love. He may have lost the intricacies: the sweet words, the thoughtful gestures, delivering the single rose he bought at the gas station to me at work. I missed a hundred little things that made Jim, Jim.

The unlearning part of Alzheimer’s unravels life as it was, and we are left with what undeniably is. Then, our choices are clear. Accept your loved one for the person he or she has become, or grieve for what was and what will never be.

Grief is a normal caregiver emotion, and how we handle grief is as individual as each person. Coping with grief should be a priority. We cannot be the kind of caregiver we want to be without taking care of ourselves mentally and emotionally.

I’ve talked to many caregivers who walked through the darkness of dementia and faced their new reality head on. Those who go on to live a full life share the common threads of optimism and a sense of humor. They find creative ways to displace the darkness of dementia with a bright and shining light of laughter and unconditional love.

Copyright © January 2016 by L.S. Fisher

Saturday, January 2, 2016

Nostalgia: Old Family Photos

For several months, I’ve been working on organizing some of my old photos. I have thousands of photos in boxes, albums, and my special red external drive. Each origin has different photos. This morning I added a new group to the mix when I downloaded photos from a cousin’s online album of old family photos.

Organizing my photos began with the ones stored on the external drive, but since I’m easily distracted, I’ve worked on sorting the Facebook photos. I’ve taken pictures on my phone, uploaded from my camera, scanned old photographs, and shared other photos that my family and friends have uploaded.

All these photos were jumbled together in my timeline. I had started a few “albums” but mostly a photo of my granddaughter’s track meet might be next to a picture of a pumpkin. No order. Whatsoever.

One of the first rules of order was to gather together some of Jim’s photos into one album. Every time I wanted to post a photo of him, I was searching here and there for it. I don’t know how many times I scanned his army photo to send it in for the Sedalia Democrat’s Veteran’s Day insert.

I posted photos of Jim in his youth, in Vietnam, on vacations, and even on trips to conventions. What I could not bring myself to post were pictures of him when dementia changed his looks. Late in the disease, Jim became gaunt, he kept his head in a thrown back position, his expressions—well, were different. I continued to love him with all my heart and wanted to do anything I could to make his life better. Making it better often started with a kiss, just like making a child’s “owie” better. Only, it never got better.

I became an advocate because I so desperately wanted a cure for this awful disease. Even when his neurologist who had him entered into a research program told me, “You know, if a cure comes now, it will be too late for Jim.” At that point, his brain was shrinking, the synapses were misfiring, and life had become a struggle for him. For me. For his mom. For our children. For everyone who loved him.

During those ten years of dementia, we learned to live a new norm. We found moments to enjoy, time to laugh, and wrapped it all in love. We found a way to live until his life was gone.

Now, I cherish the memories that made Jim the man I chose to share my life with and to father my children. During the early years of our marriage, we went through rough financial times when we struggled to pay the bills. Sometimes we had disagreements, or outright verbal warfare. But through it all, there was never the slightest doubt that we would work it out and that love trumped adversity and controversy. He always had my back, and I had his.

When he changed, I missed his fierce loyalty and the way he spoiled me. He never called me by name. He always called me by a term of endearment: “honey,” “sweetheart,” “princess.” The closest he came to calling me by name was “Lindarella,”—a play on the song “Cinderella” that he sang especially for me.

Photos and videos bring him back to life—the way he was. Yes, I’ll keep the photos of him late in the disease, and I may even share a few. Others will remain private.

Memories are a way to enrich the present, not hijack it. Looking through my album called “Old Family Photos” I realized how blessed I am to have these photos to remind me of the love I’ve received and given.

Old photos make me smile. My heart overflows with good fortune and the blessing of enduring love.

Copyright © January 2016 by L.S. Fisher