My Mom vs. Dementia: Sadly, Dementia is Winning

From the time I was 6 until I was 14, we lived in a two-story house on a busy street in North Little Rock, Arkansas. I scored my own (very small) bedroom upstairs. It was directly above the baby grand piano, where my mom would spend hours in the evenings practicing and playing. She started college well after we were born, and her music major required that she perform a senior recital. One of the pieces she played repeatedly as she prepared for her recital was a Schubert piece with a distinctive and melodic bass line. That bass melody often rose up from below and seeped straight into my eardrums as I went to sleep. It never bothered me. In fact, it was soothing and comforting. Whenever I hear that Schubert piece, or sometimes when I just hum it on my own, I am flooded with memories of my mom and my family, and all of the carefree and love-filled days from that time in my life.

Eric Church sings one of my favorite songs, Springsteen, where the chorus has a line that rings very true for me:

Funny how a melody
Sounds like a memory

My life’s soundtrack has so many melodies that sound like memories in my life: Schubert, John Denver, the Eagles, Earth Wind and Fire, Willy Nelson, and the people who wrote the Thomas the Tank Engine theme song are just a few of the melody creators whose work elicits clear memories of specific moments in my life. I don’t understand why our senses trigger memories like this. In fact, I don’t really understand how memory works at all. 

And that’s why I’m writing today’s post. Because my wonderful Mom, the talented pianist, the multi-tasking super-mom who managed four children born within five years, the valedictorian of her high school class at age 18, and the summa cum laude graduate from college at age 37, is now suffering from a case of dementia that is crippling her ability to remember, and there’s nothing anyone can do about it.

Until about five years ago, everything was pretty much fine. We worried a little about Mom. She lived on her own and did not socialize much other than going to church. She would garden but had no exercise routines. Whenever I came home, I would take walks with her and urge her to make that part of her daily routine. She never did. And she worried too much – about projects like arranging her gazillion photos and other projects, none of which really needed to be done. But she was energetic, she looked great (she still looks great!), and she remained the same loving, caring, silly, fun, and talented person she had been for her first 77 years. 

Just four years ago, she was out at our home in Malibu for Thanksgiving. It was a wonderful visit, and I did not know it would be her last. While she had a few memory lapses, she was a doting grandmother to her grandsons, she made the gravy for the turkey, and she took walks on the beach with us. Mom got to meet Ryan’s future wife, which, it turns out, was an incredibly special moment because she was unable to make it to last year’s wedding. And Ryan brought sheet music for Music of the Night from Phantom of the Opera. In an impromptu, emotional, and powerful performance, Mom sight read the music and played piano while Ryan sang with his beautiful voice. We were all smiling and crying. I just rewatched the video of that performance, and I could not believe it was just four years ago, Once again, it made me smile and cry. That melody will always sound like a priceless memory.

From there, it’s been a rough decline to watch. I remember one night while I was visiting her about three years ago, she was driving us from my sister’s house to her house. It was a drive she had done hundreds of times. After she took two wrong turns, I asked her if she needed help. She responded that she did not remember where she was going or how to get there. 

She began repeating herself more and more. We learned that the worst thing you could say to her was that she had already told us something. It increased her anxiety and sent her into a tailspin. She quit going to her Bible study group, one of the few social groups she participated in, because they kept telling her she was repeating herself. She would forget to eat, and spend days getting nothing done at all. Doctors were slow to diagnose it as dementia or Altzheimer’s, but we knew.

Martha and Pat, my siblings who live in Little Rock, intensely felt the burden of caring for an ailing parent. They fielded dozens of worried phone calls from Mom, taking each one in stride, patiently calming her down and helping her remember whatever she had forgotten. We were all concerned that something terrible would happen to her with no one constantly looking after her. We moved her into a senior living facility with a moderate level of care. She hated leaving her house, but it was the right thing to do. We loved that she was in a place where she could enjoy social interactions. That was a good place for a couple of years, but then the dementia started eating away at her physical abilities, including her ability to walk. 

By 2022, she had lost an incredible amount of strength and balance, could not walk without a walker, and often had to use a wheelchair. She could no longer live independently at all. So, we moved her again, this time into a wonderful facility that has 24-hour care and a very low employee-to-resident ratio. I don’t see her moving again.

When I visited her last week, we decided to take her on a drive through Little Rock. We thought it best to use the wheelchair to get her to the car. When we wheeled it up to her, she asked us if she had ever used a wheelchair or a walker before. Every day is a new day for her.

Mom still has long term memories, though during this last trip, I saw those beginning to fade. Even so, she absolutely loved being with all four of her children. She smiled and laughed. She enjoyed our meals together. She was delighted by the drive and all of Little Rock’s fall-colored trees. She was amazed by my sister-in-law’s art gallery and wanted to buy everything. She felt true joy with every moment of our time together. We did too.

But I know that by the next day, if not the next hour, it was all gone. During each visit, we shared pictures with her of our adventures the previous day, and she had no recollection of those experiences. I know she loved that moment, as she loves her phone calls from her caring and very funny older brother, and as she loves other visits and FaceTime calls from her children. There’s no denying that these fleeting moments of joy exist for her, and there is power and solace in that.

I know I am not alone in this experience. I hear similar stories from so many of my friends with aging parents. One of my friends in our neighborhood just had to leave for several weeks to take care of her dementia-suffering father while her mother recoups from a fall. I recently attended a memorial service for my friend Seth’s mother, whose last years were dementia years. While in Little Rock, I visited my aunt, who is also suffering from extremely advanced dementia. I’m sorry for all of these people, and I’m sorry for all of us who at best, suffer as we watch it destroy our loved ones, and at worst, also feel the overwhelming burden of being full time caretakers. 

Some kind of dementia hits almost 35% of those over age 85. That is a massive number. Peter Attia describes the “four horsemen” that kill so many of us as we age: Cancer, Metabolic (Blood Sugar) Illnesses, Heart Disease, and Neurodegenerative diseases such as dementia. Of those four, we know the least about dementia. We can’t cure it, and we don’t know enough about how to slow or prevent it. Some people have a gene that makes them more susceptible to it. I have not found out if I have that gene, but I am going to act as if I do. While not enough is known about prevention, there is data to show that we can act in a way that, with or without that gene, may make us less susceptible to these neurodegenerative diseases. 

The preventative routines that I took to heart from Attia’s work are:

  • Physical Activity. Attia calls exercise “the most powerful longevity drug.” Critical exercise includes strength-building, moderate aerobic activity, and strenuous aerobic activity. 
  • Limiting Sugar Intake. We need to make sure our blood sugar levels are as healthy as they can be. I guess that’s why every year, when I get my physical, the first thing my doctor writes is, “Your blood sugar is great!” 
  • Mediterranean Diet – You all know it – whole grains, vegetables, fish and lean protein. 
  • High Quality Sleep. Researchers are piling on the stack of evidence that quality sleep is essential. The bad news: I am a lousy sleeper. I sleep soundly for four to six hours, then it is fitful, if at all, after that. Part of my bad sleep history is so many years in stressful jobs with long hours. Part of it has been believing that I do not need eight hours. I’m working on it.

Though Attia does not show them in his research, I have read of two additional elements of healthy living that I believe are critical:

  • Healthy social interactions. This is present in the Blue Zones research and in many other sources on longevity.
  • Challenging yourself intellectually. This means continuing to learn, create, and solve problems. These can be fixing something around the house, volunteering, hobbies like photography or mahjong, reading to become more of an expert on a topic, and even challenging yourself with the mental challenges presented on the pickleball court or the golf course.

These habits won’t keep us from getting dementia, but they will improve our chances. I’m in for that. 

While we can’t be certain of the future, here’s what I know. We all have today. As Seth said at his mom’s service, “The time is now to do what you want. Don’t wait.” There may have been a highly appropriate expletive between “Don’t” and “wait.” He’s right. Five years ago, my mom was living a great life. Now, I can’t say what she thinks. I wish I knew. I know that I hate the life she is living. Seth’s expletive would fit nicely between “I” and “hate.”

I know that I am not in control. I embrace the fact that I can make lifestyle choices that give me a better chance, and that I can do a much better job of taking care of myself. I am going to try to be a better sleeper. Whatever comes, I am committed to doing my best to cherish and make the most of every day that I have here. And we will see what cards turn up as I head into my last decades.

Our lives contain so many beautiful melodies we have heard throughout our lives: melodies created by our families, our friends, our passions, our loves, and the beauty that we have experienced each and every day. For all of us, may those melodies sound like memories for as many years as possible.

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I highly recommend that each of us read the Peter Attia book, Outlive. I wish I had read it 30 years ago. To that end, I will be giving it to both of my sons for Christmas this year. In this post, I have barely scratched the surface of all that he has to say. You can read my review here.