Reflecting on: “Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s,“ by B. Smith, and Don Gasby.  

I spent a week this past year helping my older son move.

I am almost 68, but a rather fit 68. All of us have helped someone move. Four days of grueling, backbreaking work. Everyone helped. Really, it was a wonderful experience.  And I recovered rather well. I had a few more sore tendons in my shoulder. Not bad.

The last evening there, we were eating at a Mexican Restaurant in Woodland Park, relishing our feat. During our conversations, I told my younger son that I had mentioned something to his older brother but referred to his older brother as his father. He looked up at me and asked “who?”
I stopped, not knowing what I had said wrong. There was a brief pause, and then it occurred to me that I was his father. We all laughed. I chalked up the verbal faux pas to four days of near physical exhaustion. Your brain doesn’t work as well when your body is exhausted.

With Alzheimer’s, You Disappear

Misremembering, absentmindedness, forgetting the name of a celebrity, misplacing your keys, or momentarily forgetting which exit to take can be frustrating, but experiencing one or more of these annoyances over the course of a few months is nothing, nothing like full-blown dementia. You don’t just forget where you left your keys; you forget how to use a knife and fork, you forget where you live, you forget every person you know, you forget the trips to the Caribbean; you forget what a car key is and does. You disappear, and sadly, you aren’t aware that you’ve disappeared.

It’s All About the Engine

We’ve been on a journey this season exploring the aging brain. Since the beginning of the season,  I’ve shared about traumatic brain injuries, Crystalized and Fluid Intelligence, how to exercise your brain, how to feed it, and we’ve looked at Captain James T. Kirk. 

Now, I want to share a story about one of the big land mines we all potentially face. This is a story about Alzheimer’s.  I read, “Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s,“ by B. Smith, and Don Gasby.  This is a story about the Smith’s experience with Alzheimer’s during the early and middle stages of the disease and it describes the ways B. and her husband, Dan, coped with the disease. It was heart wrenching, and I’m glad I read it.

Alzheimer’s disease is a form of dementia that robs you of everything you are and everything that you have been. You suffer until you don’t realize that you’ve forgotten who you are. The grieving process begins at the early stages for family and caregivers. They continue to grieve even though their loved one is no longer aware that they are the person that is being grieved.

The Dance with Alzheimer’s

The book is about B. and Dan’s love, their honesty, and their fearlessness throughout this disease.
Dan continued to love what would become B’s new self as he grieved over the loss of her old self. This was a dance, not with each other, but with the disease of Alzheimer. I first want to share the dance by sharing B’s and Dan’s words, alternating dance steps.

B
I’ll tell you the biggest problem for me: trying to remember things Dan tells me. In the beginning, I felt like there were things happening, and I needed to write them down to remember them, so I did. I have a little book for that. Dan can tell me something and I might not remember it 10 minutes later. Because who wants to forget what you’re supposed to remember.

Dan
This job of caregiver, which I hadn’t signed up for, hadn’t bargained on, never anticipated, I was doing my best. But my best wasn’t good enough, not if I flared at the wife, I loved who couldn’t help herself. So that made me feel even worse: not just frazzled and tired, and very depressed, but guilty.

B
One thing I’m having trouble with these days is my handbag. I keep misplacing it. I’ll put it down in my closet somewhere, and then the next day I can’t remember where I left it. Or I go down to the basement to get something, and somehow get it down there, and Dan gets exasperated with me. I get exasperated too! But what am I supposed to do? I think I’m going to remember where it is, and then I just don’t.

Dan
Every morning, B. goes out to her little Mercedes-Benz two-seater. It’s a car I bought her some years ago as a present. Some hesitation or fear, or maybe confusion, keeps her from putting the bags in the car. Instead, she gets in and sits there, keys in hand, not quite up to starting the engine. And there remains, until I come out and tell her it’s time for dinner.

B
I don’t feel different, but I know that I am. The slightest thought makes me cry. I never cried a lot before, not much in the movies, not in real life, either. Now I cry if I hear noise and Dan’s voice, or if he tells me I’ve had another sugary midnight snack. I can’t remember. Sometimes I cry when I’m alone, for no particular reason. They say crying makes you feel better. Not with me. It just makes me feel sad all over again.

Dan
Here’s the stone cold truth: you can never truly, fully appreciate how much you love your partner until you feel you might have just lost her forever.

B
I don’t remember the doctor’s visit or Dan putting me on the bus. I don’t remember why I got off and started wandering. I do remember it was the evening, so it didn’t seem out of place. And I remember I felt good. I wasn’t scared or worried. I felt free! I was taking care of myself, having an adventure. I know that’s not a really good thing now. I know everyone was horrified and thought I was dead. I didn’t mean for everyone to worry! But sometimes you just need to be on your own.

Dan
Damn that disease. I’m no scientist; no politician either. I can’t invent a new drug nor a cure. But I can see how desperately one is needed, and maybe in my own way, I can help raise awareness, help put pressure on public and private sectors to steer more money to research and get the job done. Just keep B. happy during the time she has left, and that’s what I’m aiming for now.

B
There are rules Dan has put on me. Like no driving. No more driving! That’s hard. I’ve been driving since I was a teenager, and that white Mercedes Sports coupe in the driveway was a gift to me. “You can’t drive anymore,” says Dan. No driving for me. I get angry, but I know he’s right. I’m not going to fight that one. I’m not crazy! Just a little here and there.

Dan
The moments of dislocation and dysfunction are increasing, the ability to follow what’s said, and to do tasks that take multiple steps, all this points to the obvious, the inevitable. When those changes do occur, I hope that I’ll be able to do what I’m hoping you can do, to not lose sight of the soul within. Studies have shown that patients with this stage of Alzheimer’s hear, think, and feel, even if they seem to have vanished from the ruined bodies, they inhabit. I know I’ll be there, holding the hand of the woman I love. I guess that spirituality, too. Good luck to us all.

A Primer on Alzheimer’s

What did I learn about Alzheimer’s Dementia from this book. “Before I Forget” is a love story and it’s also a Primer on Alzheimer’s. Here are some of the lessons.

Lesson One: I learned that Alzheimer’s affects millions of people, and we need to do something about it now. Consider the numbers.

The number of Americans living with Alzheimer’s is growing — and growing fast. Nearly 7 million Americans have Alzheimer’s.

• An estimated 6.9 million Americans age 65 and older are living with Alzheimer’s in 2024. Seventy-three percent are age 75 or older.
• About 1 in 9 people age 65 and older (10.9%) has Alzheimer’s.
• Almost two-thirds of Americans with Alzheimer’s are women.
• Older Black Americans are about twice as likely to have Alzheimer’s or other dementias as older Whites.
• Older Hispanics are about one and one-half times as likely to have Alzheimer’s or other dementias as older Whites.

As the size of the U.S. population age 65 and older continues to grow, so too will the number and proportion of Americans with Alzheimer’s or other dementias. By 2050, the number of people age 65 and older with Alzheimer’s may grow to a projected 12.7 million, barring the development of medical breakthroughs to prevent or cure Alzheimer’s disease.

Lesson Two: I learned that you will slowly lose the last 10 years of your life.
Alzheimer’s comes in three stages: Early, Middle, and Late

• Early Stage: You lose your short-term episodic memory, especially to recent conversations and events, your hand-eye coordination becomes somewhat impaired, making it difficult to use eating utensils. These symptoms may bring on mood swings and depression. This stage can last from one to four years.
• Middle Stage: long-term memory loss becomes evident. Childhood recollections may fade, difficulty recognizing family members. You become unaware of current events and confused about time. You develop sleeplessness, or too much sleep, and have difficulties with hygiene and toileting. This stage can last from 2 to 10 years.
• Late Stage: There is profound memory loss and the loss of ability to communicate, and comprehend others. The need for round-the-clock help for all personal hygiene issues.  You develop the inability to swallow, and you become incontinent. Delusions are common. You become immobile and unresponsive. This stage typically last from 1 to 3 years. The most common cause of death is pneumonia.

Lesson Three: I learned that as difficult and frustrating as it is to lose the last 10 years of your life, it is equally difficult for family members and loved ones to watch as their loved one slowly fades and disappears. Caregivers suffer through this 10+ year process. It is a family burden to be the primary caregivers. When, not if, you need home care it will likely cost up to $1000 a week. Insurance is not going to cover all of the home-care expenses. He/she will be there, but not be there. He/she will be a burden to you and also to your grown children.

Lesson Four: I learned that no one survives a diagnosis of Alzheimer’s. There are medications that claim to slow down the process.

Lesson Five: As of yet, they do not know what causes it.

Lesson Six: There may, and I emphasize may, be things you can do to lower your risk of developing Alzheimer’s Dementia. In a study in 2020, researchers, looked at diet and lifestyle, and how they increased or decreased risk for Alzheimer’s. One study looked at 1845 adults that were 73 and older, and the other study looked at 920 adults that were 81+, all free from Alzheimer’s. They followed them for six years. Here is what lowered the risk of Alzheimer’s was:

1. Non-smoking.
2. Engaged in consistent, moderate, or intense exercise.
3. Limited alcohol consumption to light to moderate.
4. Followed the Mediterranean Diet.
5. Stayed engaged in cognitive-challenging activities.

There are no promises in life. My good friend Sam sees life as walking through a minefield. You walk through life, and you step on a mine (Alzheimer’s, cancer, stroke, fill in the blank). The real question isn’t “will you step on a mine,” but “will you recover?” 

I’ve written two blogs on Resiliency in a previous season. That explains how you can prepare yourself to bounce back when you do hit one of these land mines. Is there anything that you can do to decrease your risk or prevent the devastating effect of these mines? 

And the answer is maybe! I’m writing about the aging brain in this season of my Healthy Aging Blog. I’ve asserted that you can’t get along in life without a brain, and it’s important to keep your brain healthy, because every part of your body depends on your brain. So, here are my suggestions:

• Exercise every day.

• Eat lots of fruits and vegetables.

• Work out your brain by studying, writing, learning new skills that involve hand coordination.

• If you smoke, stop smoking.

• If you drink, limit  your intake to light or moderate drinking, mostly red wine.

TO READ MORE ENTRIES IN THE HEALTHY AGING SERIES, CLICK HERE.

Elberfeld

When I was eight years old, my father moved us to a 20-acre horse farm. He started raising horses a few years earlier and had gotten the idea he could make money boarding horses and providing riding lessons. Years later, he confessed that it was a bad idea. 

When I was nine, I was trampled by one of our horses and hospitalized overnight. The horse’s name was Valentine. I survived. I wanted to wear the bandages around my head to school the next day, but the doctor said I didn’t need them, and I had nothing to show for the trauma I experienced, except a few stitches. That’s all. 

Star Trek

We lived across the street from a laundromat. I guess having a laundromat across the street and a shitty damp basement factored into Mom and Dad not getting a washer and dryer. I’m not sure why I was chosen, but I had laundromat-duty every week, and during the wash and spin cycles, I would go next-door and play army with Tommy. Tommy’s family had a color TV, and I remember waiting at the front door for him to come out. I could feel the air conditioner as his mom opened the door, and I stole a glance at the big  Xenith Color Television console.  And for a few moments, I feasted on Star Trek. The color version. 

My mom was always mindful of serendipities, those pleasant surprises that come our way, and I wondered whether or not it was one of those serendipities, or whether Tommy invited me in to watch Star Trek because he felt sorry for me after my near death experience.  I didn’t care why.

It wasn’t life-changing, but it was the very first complete color TV episode of anything that I had ever watched. They were all there: Spock, Bones, Scotty, Sulu, Chekhov, and of course, Captain Kirk, all wearing those red and yellow and blue and green uniforms.

James T. Kirk

William Shatner is 92 years old as I write this blog. He starred in 97 episodes of Star Trek and the first seven Star Trek movies. He also played a veteran police sergeant, TJ Hooker. He has hosted reality base TV shows, was in rescue 911, and is doing voice overs for numerous educational TV shows. I loved his character, “Big Giant Head,“ in Third Rock from the Sun. He was an attorney in Boston Legal. And he’s had several other acting gigs throughout his lifetime. In 2021, he flew into space aboard The Blue Virgin suborbital capsule.  

Shatner has been married four times and has three children. He found his third wife lying lifeless at the bottom of their backyard swimming pool. It was ruled an accidental drowning, due to the fact that the autopsy revealed both alcohol and diazepam in her blood. Shatner and his fourth wife divorced in January 2020 but reconciled a year later. When Leonard Nimoy died in 2015, Shatner wrote, “I loved him like a brother,” but they hadn’t spoken in person for five years. William Shatner was human. Many of his former colleague saw him as a “cantankerous, old fossil,” as George Takei, Mr. Sulu complained. But a year later, William Shatner and his former Star Trek costars made amends.

Shatner loves horses and owns a 360-acre farm in Kentucky. He has co-written several books. I picked up “Live long and…What I Might Have Written Along the Way,” written in 2018. I’ve been thinking and reading a lot about successful aging. I’ve asked myself, am I aging successfully? What does that even mean to age successfully? I’m sure researchers have considered the question and come up with the definition. I won’t bore you with any definition today, but does it really matter if someone looks at you and says, “Yeah they’re aging successfully,” or possibly unsuccessfully? I think not.

I think what matters is whether you think you’re aging successfully or not. If you read William Shatner‘s book with this question in mind: Does HE think he’s aging successfully? Then, the answer is yes. Honestly, who cares what his ex-wives or ex-costars, or even what his children think. What does William Shatner think? By the way, his three daughters are very quick to point out that he was and is a very good father.

Successful Aging According to James T. Kirk

1. Shatner would say, “I’m happy and love my life”
   Shatner was a guy drawn to shiny objects, which is maybe a hazard of the acting profession. But he has had several constants in his life or threads as he calls them. These threads include, and not in any order of importance,: his daughters, his horses and dogs, his work, his ex-wives.
   I think Shatner would say that, despite all of the distractions from shiny objects, these things have helped contribute to my happiness and  love of life.

      2. Shatner would say, “I’m able to do most of what I want to do.”
           He walks his dog’s almost every day.
           He rides his horses 3 to 5 times weekly.
          He wakes up and works.

He hasn’t had to work for many years, but continues to work.

“I was happy, I realized, because I love what I do. I don’t love it every minute, I don’t love every aspect of it, I don’t love getting up at 5 AM. I don’t love the distractions and the issues, but I have found enormous pleasure in my work.” He concludes, “The thought of retiring has never occurred to me.”

Doing what he wants to do requires good health, and “Good health,” he writes, “is not an accident.”
Shatner continues to lift 25 pound weights several times a week and walks as much as he can.
Here’s what Shatner has learned: “There are steps we can all be taking to maintain our health. There are no secret formulas or magic potions. Balance matters. Don’t smoke. Stay active. Eat sensibly. Remind yourself how good you feel. And get as much sleep as you need. For me at least so far so good.“

3. Shatner says, “I’m surrounded by my family, my friends, my dogs, my children, and my grandchildren.”
   Shatner reported that he had managed to maintain a loving relationship with his daughters. “Even better,“ he proudly says, “having finally learned how to open myself up, at least partially to relationships, I have established loving relationships with my grandchildren. I’m now convinced that the most wonderful thing a grandparent can do is hold his grandchild tightly, then hand the child back to his parents, and tell them, here, it’s yours. Then go to the movie“
   
   There are other topics in the book that support the idea that Captain James T Kirk believes he is aging successfully. How about you? Where are you at in the aging process? In your 40s, 50s, 60s like me or older? Are you happy? Are you able to do the things you want to do? Are you surrounded by people or pets who you love and who love you? 

Forget the money and the fame or the shiny objects. What matters to you? These are the things that will determine if you are aging successfully.

TO READ MORE ENTRIES IN THE HEALTHY AGING SERIES, CLICK HERE.