The Voice of Experience

A story in our local newspaper highlighted the experiences of a man who had spent nearly thirteen years in state and federal prison. William had returned to his former high school to talk to the students about how his life went wrong. He talked about the dangers of prison and how he had struggled for survival while he was incarcerated. William is a messenger with a purpose of helping young people to avoid the pitfalls of drugs. If William’s story changes the trajectory of one person’s life, he has provided a powerful community service.

After reading the article, I thought about how the voices of experience helped me throughout my life. When Jim and I began our journey through the land of dementia, I needed help to understand how to cope with the challenges of being a caregiver.

I learned the basics of Alzheimer’s from books and browsing the web, but my true guidance came from the voices of experience.

1.   Support Group. My first experience with support group was not a positive one, but I’m glad that I didn’t give up. When I found an active support group with knowledgeable leaders and members who were facing the same challenges I was, it was life changing. We helped each other by being supportive, listening to each person, and sharing our own experiences.

2.   Alzheimer’s Chapter Staff. I contacted the staff at my local Alzheimer’s Association Chapter before Jim had a diagnosis. I participated in caregiver training to help me become a better caregiver. Through the programs and services of the Alzheimer’s Association, I gained confidence as a caregiver. The harsh realities of the disease seemed less intimidating as I concentrated on making the most of a bad situation. I firmly believe that knowledge is power.

3.   Advocacy. I became a state and national advocate for legislation to help caregivers and persons with dementia. Jim’s voice was stilled by aphasia, and I felt it was important for me to be his voice. Alzheimer’s advocates are armed with facts, figures, and supporting documentation, but the most important tool in the advocate’s toolbox, is his or her personal story. Personal experience as a caregiver or a person with dementia is the most memorable part of the meeting.

4.  Alzheimer’s Association Helpline. The Alzheimer’s Association has a 24/7 Helpline. By calling 800-272-3900, you will be connected to specialists and clinicians who offer confidential support and information.

Alzheimer’s can be a lonely disease, but when you find a group that supports you and cares about your well-being, it changes your perspective. I always thought of caregiving as on the job training. Caregivers make mistakes and if you can learn from the mistakes of others, it helps you to avoid making the same ones they did.

Being a caregiver is challenging, but it is the ultimate act of love. The disease can cause distressing changes in your loved one. I learned to love Jim “as is.” I tried not to dwell on the man he had been before dementia, or think about what the future was going to bring.

After Jim passed away, I finally was able to watch some of our old videos. When I saw Jim laughing, singing, or telling corny jokes, I found peace and a sense of joy to hear his voice again. Life had moved full circle, and I thought about all the life experiences Jim and I shared. His was the voice of experience that taught me that love, family, and faith are the cornerstones of life.

 

Copyright © May 2024 by L.S. Fisher

http://earlyonset.blogspot.com

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Memorial Day: Remembering Jim

Memorial Weekend has become a time for sales, barbeques, beaches, picnics, and vacation time. Others decorate graves, attend Memorial Day services at cemeteries, or attend a parade. However Americans choose to observe the three-day weekend, they may pause to give credit for their freedom to members of the armed forces of the past, present, and future.

The tradition of placing flowers on the graves of fallen soldiers was first observed nationally three years after the Civil War in 1868. Major General John A. Logan chose May 30 as Decoration Day because flowers would be blooming then. The first large observance took place at Arlington National Cemetery where flowers were strewn on both Union and Confederate graves.

The first time Jim and I visited Arlington in the 1980s, we were awestruck by the size! We thought we could just walk around and find graves of famous people, but since the cemetery was spread over 657 acres, we chose to do what most reasonable tourists do and bought tickets for the tour bus.

Since we caught the last tour of the day, we had to quickly visit each site and board the same bus. The bus stopped for the changing of the guard at the Tomb of the Unknowns. Everyone hustled past the Memorial Amphitheatre except Jim. I hung back to see why he wasn’t joining the crowd.

“We are going to miss the changing of the guard,” I said.

Jim stood in front of Audie Murphy’s grave marker videotaping. “This is what I wanted to see more than anything,” he said. I understood why Jim was so entranced with the gravesite. Jim had already worn out several videotapes of To Hell and Back, the movie about the true story of Audie Murphy starring Murphy as himself.

This incident is etched into my memory as an example of Jim’s unique view of life. He was more intrigued by a simple grave marker of a man he admired than by a ceremony.

After several minutes, we walked toward the crowd and saw part of the changing of the guard at the Tomb of the Unknowns.

As we walked back to the bus, Jim said, “I want to be buried here.”

“That’s not a good idea,” I argued, “because I wouldn’t be able to visit your grave.”

He smiled and put his arm around me. It was just a passing thought and not something he dwelled on.

Later, he chose a place in Colorado where he wanted his ashes spread. Maybe he remembered my remarks about Arlington, because he said, “It might be nice to have some place that family could visit too. Maybe a marker somewhere.” When Jim passed away, his body was cremated and we honored his wishes to spread half of his ashes in the designated place.

I knew I’d found the perfect place for Jim’s marker when I saw the Missouri Veterans Cemetery at Higginsville, which has the beauty and grace of Arlington on a much smaller scale. I knew Jim well enough to know that had he seen the Missouri Veterans Cemetery, he would have preferred it to Arlington. After military honors, the remainder of Jim’s ashes were place in a niche in a columbarium that overlooks a small lake.

Annually, on Memorial Day, a crowd gathers for a ceremony to honor the veterans buried on the site. I can’t help but imagine that, in spirit, Jim will be fishing in the lake, ignoring the ceremony, being his own person, doing his own thing.

Copyright © May 2024 by L.S. Fisher

http://earlyonset.blogspot.com

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Old Friends

I recently watched two movies on the same day about female friendship. The first movie I watched was Patsy and Loretta. The two country singers Patsy Cline and Loretta Lynn had a friendship forged in mutual respect, similar life styles, and honesty. Their story begins when Patsy Cline was injured in a car accident and ends when she dies in a plane crash.

The other movie I watched, strangely for the first time, was Thelma and Louise. The adventures of the friends quickly turn into misadventures. Louise threatened to shoot a man who was attempting to rape Thelma. He made the mistake of yelling at her that he should have continued, so Louise shot and killed him. Later, after a hitchhiker stole their money, Thelma robbed a liquor store. As an armada of police cars chases the two fugitives, they opt to kiss, grab hands and “keep going” and fly their Thunderbird into a canyon. Friends to the end.

Friends that earn our undying love are few and far between, but that does not devalue friends who celebrate our successes and support us when we fail. We gain friends throughout life who share common goals.

Our first friends are family. Our cousins and immediate family members share life experiences with us. When we begin school, we gain other friends. Several of the women in my high school graduating class meet monthly for lunch. Our friendship is stronger now than it was when we saw each other on a daily basis.

As we grow older, our in-laws become part of our family. Jim and I both came from large families and I gained a multitude of in-laws throughout my lifetime. His family became my family.

Thelma and Louise became friends at work. Considering how many hours a person spends at their job throughout their lifetime, it is not surprising that some of our co-workers become our closest friends and confidants.

In 1998, after Jim showed obvious signs of dementia, I began volunteering for the Alzheimer’s Association. I opened up my heart to persons with dementia, other volunteers, and staff at our local Alzheimer’s Association Chapter. My world expanded to annual advocacy trips to Washington, DC, where I forged additional friendships. Distance and time do not diminish the special bond that I have with my fellow Alzheimer’s advocates.

When I joined BPW (now, Sedalia Business Women) in 2006, I had no clue as to how many new friends I would make. Now, many of them are old friends, and as our club grows, I make new friends on an ongoing basis. Like Patsy and Loretta, we don’t always agree on everything, but the friendship doesn’t waver.

Later in life, I gained friendships through church, line dancing, and music. During the past trying years, I’ve mostly watch services on my cell phone and arthritis ended line dancing but I still hold these friends in my heart. Music has taken a larger part in my life after I learned to play the ukulele and joined the family band. This has been a two- or three-fold advantage. I see much more of my family, renew old ties with friends who are in nursing homes, meet new friends, and learn to know other musicians.

A song says “you can’t make old friends” but I don’t believe that. Sometimes you meet someone who seems like an old soul. It’s hard to explain an immediate strong connection and it almost feels as if the person is not merely an “old” friend, but an ancient friend. That was how my friendship and love for Jim felt. Almost from the beginning, Jim said he would lay down his life for me. I never once doubted that he meant it. After I met Jim, my life began the destiny that made me the person I am today.

Jim’s endless love gave me the courage to live life and love fearlessly. Yes, I open myself up to grief and loss, but it is well worth it.     

 

Copyright © May 2024 by L.S. Fisher

http://earlyonset.blogspot.com

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The Bigger They Are

We’ve often heard the expression that the bigger they are, the harder they fall. I was reminded of that idiom after the recent series of storms where mighty trees crashed to the ground.

The phrase is believed to have originated from the sport of boxing and is sometimes attributed to Robert Fitzsimmons prior to a fight. As with the tree, the boxer was referring to a physical fall, but the expression means much more that physical falls.

The actual meaning is that the more powerful or important a person is, they suffer more when they fail. We’ve seen this play out many times in politics, with celebrities, and influential people in our communities. Some people relish the fall of the mighty, while others may be dumbfounded or shocked that a person they admired could be guilty of a heinous act.

At one time, only famous people had to worry about their ill-advised faux pas being disclosed to the public. Now, for better or worse, we have social media to point fingers, criticize,  or play judge, jury, and recommenders of punitive punishment for our neighbors, random strangers, or Facebook friends of friends.

In the real world, as we age, we find out that physical falls are a much greater threat than a mean Facebook post. The hardest fall I ever had was on ice. My feet went out from under me and I fell flat on my back and hit my head on rock-solid ice. For a flash second, I thought the fall would kill me, but once I felt the excruciating pain in my head, I thought I had broken my head. There are serious advantages of having a hard head.

Each year during my Medicare physical, the nurse asks if I’ve had any falls within the last year. Since I can be clumsy and suffer intermittent vertigo, I usually answer in the affirmative. Fortunately, I only have a few bruises to show.

Jim always had amazing balance. He used to throw a ladder on the stairs to the basement to change out a stairwell light bulb on the ceiling. I couldn’t stand to watch while the ladder teetered, but he was unconcerned.

After Jim developed dementia, he began to have problems with mobility. He would lose his balance and fall. One of the reasons people with dementia fall is that they have trouble finding their way around and pay no attention to hazards. They also tend to walk faster than they should, which can throw them off balance. Our family doctor took Jim off blood thinners because of the fall risk. Jim had several falls while he was in long-term care, and had to have stitches from time to time, but fortunately, he never broke any bones.

  Although we can’t eliminate all falls, we can certainly limit our fall risk with some home modifications:

 Rocking the Walker: My husband and I both have mobility problems. My orthopedic doctor recommended that I use a walker at night when I get out of bed. I’ve discovered over the years, that with my arthritis, I use the walker early in the mornings. Depending on the kind of day I’m having, I may need the walker throughout the day and take it outside to walk the dog. Other times, I don’t need any aides to walk, or a cane will provide all the support I need.

Avoiding Stairs and Carrying Heavy Items. Stairs can be a tripping hazard for a person with balance issues. We installed a chairlift to the basement. We had stairs leading down to our garage and we replaced them with a wheelchair lift. Both items were expensive, but they sure have made life easier. An inexpensive wheeled cart streamlines bringing in groceries. I load the cart from our vehicle, roll it across the garage floor, and onto the lift and into the house.

Proper Lighting and Avoid Tripping Hazards: We are fortunate to have a well-lit house. Even so, we leave lights on at night in the areas where we need them and have nightlights throughout the house. We’ve removed throw rugs, and switched out carpet for solid flooring. We make sure that all floors remain uncluttered. We both keep water at our bedside to avoid getting up for drinks in the night.

 It may be that the bigger they are, the harder they fall, but small people with fragile bones must be extra careful about falling. A fracture can be the difference between living in your home and a long rehabilitation recovery at a facility.  

The best fall prevention is risk assessment. Once your environment is as safe as possible, use every precaution to navigate safely through your home.

 Copyright © April 2024 by L.S. Fisher

http://earlyonset.blogspot.com

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