Saturday, September 22, 2012

The Cruelty of Alzheimer's

In one of my favorite movies, The Shawshank Redemption, Ellis (Red) Redding (played by one of my favorite actors, Morgan Freeman) is re-united with his friend, Andy Dufresne (played by Tim Robbins), after Red is finally paroled from Shawshank Prison, having served for 40 years.  At the time Red first was imprisoned, he'd been a "stupid kid" who'd committed murder during a robbery - after 40 years, he was an old man, deeply regretful of his terrible crime.  One message of the movie is that hope is a good thing, and good things never die.  In the movie, Andy and Red had 20 years together in prison and the movie ends with them being re-united ...

A bit more than 40 years ago, I first met someone who has been my friend ever since.  Those who know me may well know of whom I speak, but I'll not mention his name here.  What's happened is my friend is a victim of early onset Alzheimer's Disease.  His symptoms appeared before he was 60 years old!  As it has progressed, it first took away his ability to work - he was forced to retire because he could no longer do his life's work at the high level that he had established.  For my friend, this was a cruel blow, as he has been one of the best in the world at his job and loved his work, as I have.

It also took away something he was looking forward to at the end of his professional career - he had a hobby he cared for almost as much as his work, and anticipated being able to give it the time that his professional life didn't allow.  That, too, has been taken from him.  Those adventures he planned have never come to pass.

As time has passed, he has become less and less capable of doing things for himself.  He can no longer drive - he forgets where he was going, forgets how to get there, and forgets even how to find his way home.  He doesn't know how to work a seat belt.  He struggles taking the top off a water bottle or putting money away in his wallet.

Yesterday, he looked me in the eyes and asked, "Do I know you?"  Yes, I said, "We've been friends for 40 years." He stared at me in amazement.  He couldn't remember my name, or much about what we had done that day.  For all intents and purposes, the confident, supremely competent, generously helpful man that has been my friend for 40 years ... is gone.  He still has moments when the person we've known and loved peeks out from behind the fog of Alzheimer's Disease, but those moments don't last long and they only serve to remind him that he's losing his memories and his life.  That may be the cruelest part of all about this terrible disease:  he's known what inevitably was going to happen but could only watch as it has slowly and remorselessly taken things away.  His body continues to function reasonably well, but the person I've known for 4 decades is virtually gone - all that defined his personality and character are now just memories.  Memories, of course, are precisely what he no longer has.  It's as if those things never happened for him, now. 

Words cannot describe how painful it's been to watch this decline.  Today, my friend is gone, for all intents and purposes.  I knew this would happen.  I knew this day would come.  I knew that a 40-year friendship would come to be a lost memory for him.  Now that it's arrived, I'm somewhat depressed, but I still have my memories of that time and the adventures and experiences he shared with me over the years.  That's what keeps me from being really shaken by all of this.  My memories may not be as sharp as they were, but most of them are still with me.  I miss my friend, but he's given us a very meaningful legacy, a host of treasured memories shared - not just mine, but those of the many people whose lives he touched in a positive way.  I can endure this, but it hurts.

Alzheimer's is a cruel disease, and there are other degenerative diseases that can have similar results.  I know, because another long-time friend of mine is being victimized by a different disease - but with similar results:  faculties once razor-sharp now dulled into non-existence.  Another once-capable friend is slipping away from me, bit by bit, even as I type this.

If you have a chance to contribute to seeking cures for these intensely cruel degenerative diseases, please don't hesitate to do so.  And if you know victims, you should do as much as possible to interact with them while they still can enjoy it.  Your time with your friends (and family) is precious in any case.  You never know when it might be lost forever.

Hope may never die, but friends (and family) do.  The very worst part of growing older is losing your friends and family ...


Bob Zamora said...

I am really sorry to hear about your friend Chuck. Our bodies may fail us but as long as we have our minds we are intact. Sadly, the opposite is not true.

Bob Zamora said...

Really sorry to hear about your friend Chuck. Our bodies may fail us but as long as we have our minds we are intact. Sadly, the opposite is not true.

Lak said...

When I saw him last, our mutual friend had forgotten which country I was from, but remembered with fondness my parents' visit to his home. So, he may have forgotten your name, but probably still has memories of things he did with you -- it's just that those memories are non-specific.

Chuck Doswell said...


Unless I'm mistaken, the person of whom you speak was not the subject of this essay. The issue is the loss of capabilities, not so much the loss of memories, per se. Overall, memory powers those capabilities.

Roger Edwards said...

I hadn't happened to look at your BLOG in a few weeks, but some inner twinge compelled me specifically to seek it out today. Despite the awful (if not surprising) news, I'm glad you posted this report. Thanks. I know of whom you write, and his decline since I saw him last year is deeply saddening.

As gut-wrenching as it must have been to go unrecognized, you alluded to one highly appropriate way to approach this situation: to cherish the good times and memories we did have with him before this happened. That is his personal legacy, which lives on far beyond his own recollection of it. Nothing can take away his professional and educational legacies either. The knowledge and insights he dispensed to his peers, students and audiences enriched us all beyond measure, as did the passion he exuded in doing so. Maybe he doesn't know anymore about the influences he has had on so many people; but that doesn't change the truth of those influences.

All of us who have known, admired and tried to emulate his approaches to that work and hobby will keep ablaze the torches he lit, even as this insidious disease snuffs out his own flame. It's the least we could do to honor his contributions.

From here on out, I wish, hope and pray for a minimum of physical suffering, as has been the case with my much older mom (who doesn't recognize me anymore and probably hasn't for a few years, due to a different and unrelated form of dementia). They may be gone in many respects, living in an increasingly distant world of instantaneous sensation and continual unfamiliarity; but parts of them really do live on in those of us who knew them through many more years of full lucidity. It's natural and proper to grieve what's gone, but don't forget to celebrate his legacy too.

Anonymous said...

Chuck, as long as his enthusiasm and joy live within us, he's not truly gone. I treasure his wisdom and vision in so many ways! As long as his passion resonates inside us, he is still here, mind body and soul intact. The spirit carries on.


Garrett Fornea said...

You have my empathy, Dr. Doswell. When I was nine I lost my fraternal grandmother to Alzheimer's Disease. I don't have as many memories of her as I do my maternal grandmother (who is still with us), but I do have a few that I can share.
We called her Gran Gran.
My earliest memories of Gran Gran are of her living with my Aunt Libbie (my father's younger sister).
I recall her staying at our house at least once, sleeping in my older sister's bed.
I recall once thinking the way she said something was funny, at what I believe was a family get-together.
I don't necessarily remember it, but there is a picture of her at my fourth birthday party, with my four-year-old self smiling at her in the background.
She spent her final years in convalescent home. I remember my family and I visiting her many times in those years. I vaguely remember her being rather incoherent, but I am told that she would call me "Tommy" while we are there. Now, Tommy is what my dad goes by. Perhaps she thought I was my dad [when he was a kid], I don't know.
I have heard that shortly before her passing away, I think even the day of, Gran Gran spoke coherently one last time. This was to my Aunt Libbie and my Aunt Katkat (Dad's youngest sister). I believe she told them to "give Mama a hug," or something like that.
My last memories of her were a few days before she died and the wake afterwards. My parents and I went to visit her in the hospital. She was not awake, and occasionally she would make a sound; but I don't think she woke up at all while we were there.
I wasn't at the funeral for reasons I cannot remember. My parents probably did not feel I was mature enough to go to one. I was, however, at the wake. I do remember one of my older cousins crying by her coffin.
I remember neither crying nor being devastated when she died, having believed that she was in a better place. My fourth grade teacher commended me for having a good attitude about it.
These are the memories I hang on to - I wish could have gotten to know her more before she passed away. Gran Gran was a sweet and beautiful lady.

Chuck Doswell said...

The following comment was sent by Brian Curran:

Chuck, as long as his enthusiasm and joy live within us, he's not truly gone. I treasure his wisdom and vision in so many ways! As long as his passion resonates inside us, he is still here, mind body and soul intact. The spirit carries on.

Joel Genung said...

Chuck, this is a very sad story but in its own way, a poignant tribute to what true friendship really is. Your mutual adventures and contributions are countless and you'll always share those, no matter how much further the light dims.

Tim Samaras said...

Woke up this morning thinking about him. Thanks for posting an update, Chuck. Such a cruel disease, indeed.