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Alzheimer’s: Relentless, Costly, Incurable

This year 450,000 Americans living with Alzheimer’s disease will die.*

A number that large is hard to understand, so let’s cut it to, say 40. That’s roughly the number of people I saw a few months ago when I visited the wing of the south Florida facility where my mother now lives.

She didn’t recognize me. No one recognizes anyone. Only the caretakers recognize the regular visitors, like my sister, who lives close and comes often. But the residents? If conversation were possible, each would have a story – about a hometown, a childhood, a first love, wartime, marriage, parenthood…

One might tell you about living through the Great Depression. Or about the older musician she impulsively married while still a teenager. Or about spending the 1950’s in Paris. Or about a tryout with the Cincinnati Reds.

No more. This is one of the cruelest things about Alzheimer’s. It wipes away memories as flames consume paper photos.

Talk to the children of Alzheimer’s victims and you quickly realize the awful toll the disease also takes on families.

It’s not uncommon to hear adult children say death would be a mercy for the people left as Alzheimer’s runs its gruesome course are no longer their parents. They’re living ghosts.

That sounds harsh, but it’s not like there’s a cure on mom’s Florida horizon, where Alzheimer’s shot up 25 percent from 2000 to 2010. And where she was doing just fine not so long ago.

In 2000, my mother was in her late sixties, still smacking tennis balls, gliding over dance floors, devouring novels and reveling in her grandchildren. All this followed a long career as comptroller for a moving company, and later a jewelry wholesaler, not bad for a Brooklyn girl who never made it to college.

Now the eyes that kept the company books straight can’t even read these words. Or the novel I wrote and dedicated to her a few years back. I flew to see her as soon as it came out. It was a difficult visit, but we did have a moment of clarity that I’ve described in this video.

Since then, things have gotten far worse, which won’t surprise those who have lost someone to the disease. A new study from the Alzheimer’s Association shows:

  • Alzheimer’s is the only cause of death among the top 10 in America without a way to prevent it, cure it, or even slow its progression.
  • For now, there are no survivors. If you do not die from Alzheimer’s, you die with it.
  • More than five million Americans live with the disease, which is the nation’s sixth-leading cause of death.
  • This year, Alzheimer’s will cost the nation $203 billion. That will skyrocket to $1.2 trillion by 2050.

It’s not that I want my mother to die. To us – and I’m betting there are plenty of other adult children who feel this way – it feels like she passed long ago. All we want is to remember how she was, and how she lived, and to have a dignified funeral.

Is that wrong?

* Source: Alzheimer’s Association report.

Moment of Clarity video.

Read more posts by Steve Piacente, a former print journalist and correspondent. Steve is a blogger for JenningsWire.

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8 Responses to "Alzheimer’s: Relentless, Costly, Incurable"

  1. Suzette says:

    Steve – this is a touching piece that sheds light on the pain of a horrible disease. Thank you for sharing your personal story with others. I wish you and your family love and peace and comfort.

  2. Steve Piacente says:

    Thanks, Suzette; I believe stats are sterile and it’s the stories that connect us. The more attention we can draw to the disease, the better … Appreciate you dropping by.

  3. Abby Hugill says:

    Very well written and heartfelt post, Steve! We lost my maternal grandfather to Alzheimers in 1996. While I loved him dearly, he was deteriorating for most of my childhood and it truly was a relationship robbed by the disease. Thank you for writing about your experience; the more exposure & awareness, the better.

  4. Steve Piacente says:

    Appreciate you sharing your story, Abby, and sorry for your loss. I hadn’t thought about the ripples that extend beyond the first generation. Of course the grandchildren are affected as well…

  5. Karen Haeffner says:

    I was going to write a comment and just saw that my daughter, Abby, wrote a previous comment, xoxo…. My mom lived as my dad’s caretaker without help and without a peep of complaint until his last 2 months when she could, physically, not carry on. I saw the toll on her and admire her for the care and dignity that she provided for my dad. In retrospect, we think that his mother and his aunt also were affected by this dread disease. Seeing the toll on my dad, we gave my parents a 45th anniversary party and trip since my sister and I thought that dad might not make it to the 50th… we were right. Bless you, Steve, for your blog.

  6. Steve Piacente says:

    Thanks for adding your voice here, Karen. It’s remarkable how many lives have been and will be touched by the disease ..

  7. Faith Fischel says:

    Steve- thank you for writing such a wonderful article. This is, indeed, a very difficult subject and the more people discuss Alzheimers, the better. I wrote a paper back in graduate school about Alzheimers- and at that time, there was very little research about it. There is so much more information- but so much we all still have to learn. I am sure if Ceil could still read and comprehend, she would be so proud of you for this and all your incredible writings. I am currently going through a similar situation with my dad, and just knowing there are others going through the feeings and thoughts that I am experiencing, is helpful. I know, intellectually, there are many people experiencing what we are experiencing, but not until I see it in writing and meet others in support groups do I realize I am not alone (with my sisters). Thanks again- good luck on other articles. I’ll keep reading, of course!

  8. Thanks, Faith; despite the statistics, I’m still surprised when I hear about the high toll this disease has taken on so many families. Thanks for your kinds words and support.

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