I recently took Terry Gross to task for doing a show on aging dogs while overlooking, in my opinion, older people.
So to be fair, I’m blogging a rave review of her show yesterday that explored some really provocative questions about Dementia.
Let me pose a hypothetical question before I explain the details of the interview:
Imagine you’ve been diagnosed with early onset Dementia and you’re offered the choice to participate in an experimental drug study. If you take the drug, your memory will be preserved but you will die from the side effects within three months. If you forego the drug, you may live for a decade or more, but you will suffer the symptoms of Dementia.
That’s the question posed in the new novel The Last Days of Ptolemy Grey by Walter Mosley, who has written more than three dozen novels, including many mysteries featuring the L.A. detective Easy Rawlins.
The Last Days of Ptolemy Grey By Walter Mosley
Mosley tells Fresh Air‘s Terry Gross that he wrote the novel — and imagined what Ptolemy was thinking — after watching his mother’s mind deteriorate from the early stages of dementia.
“When you deal with a person who’s experiencing dementia, you can see where they’re struggling with knowledge,” he says. “You can see what they forget completely, what they forget but they know what they once knew. You can tell how they’re trying to remember. … What I saw in my mom’s eyes and in some of her expressions, was her saying, ‘I want to understand it; I want to understand what you’re saying; I want to enter into a dialogue with you; I want things to be the way they were.’ That’s the crux of the novel: What would you do to have things the way they were?”
In the novel, Grey meets with a doctor who offers him a medicine that will restore the electrical connections in his brain — and his memory — but only for a short period of time. “The doctor says, ‘I can give you this medicine
and there’s a chance that for the next three months, you’re going to have perfect memory. There’s a chance that you’re going to be able to think the way you used to. At the end of that three months, it’s a definite you’re going to be dead,’ ” says Mosley. ” ‘If you don’t take the medication and you’ve got a good body, you might live another 10 years, but you won’t know a thing. So you make the choice: three months aware or 10 years in a daze?’ “
I found Gross’ interview of Mosley riveting and highly recommend listening to it here.
I don’t think many of our readers will be surprised that when asked, Mosley said he would take the drug and early death sentence rather than live with Dementia.
What do you think? I think it’s a serious question with implications regarding how our culture views Dementia, and in turn how our culture treats people suffering from it. I’d like to hear what the experts in our audience think.
Kavan is a social media entrepreneur committed to growing the use of social networking towards promoting the equality, sustainability, health and well being of people of all ages. Combining careers as a national journalist and public relations expert, Kavan focuses on the power of user-generated content to communicate ideas and build movements.
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When I first read the question, my answer was immediate…gimme the drug and I’ll take the 3 months. But then, I started thinking about the people I work with. I own a personal care agency in Utah and care for elders in their homes, in assisted living settings, and in rehab centers. Some of my clients have Alzheimer’s and they definitely have an impairment I’d never wish on anyone. BUT, at least in this stage, I still see a sense of humor and a love for those around them. One of my “adopted grandma’s” is funny, polite and stubborn. She hates to be bossed around by the CNAs. She still loves to have lipstick on and still hates nail polish. She loves her children even though she can’t remember how many she has. Sometimes I have to remind her of their names but her face lights up when she sees them or when they call. She tells everyone that I’m the “sweetest, nicest girl ever!” OK…I’m over 50 and most of my friends wouldn’t describe me as “sweet!” Ah, but that makes my day to hear that compliment from her!
If my amazing friend had taken the “3-month” drug when the first signs of dementia appeared 3 1/2 years ago, she would have missed so much! Her children visit and call frequently. The joy of this contact lights up her face. A McDonald’s chocolate milk shake is her favorite treat and she doesn’t remember to worry about the calories! She has lived long enough to meet and hold her great-granddaughter. We have pictures of her smiling happily, sitting next to her granddaughter and holding her great-granddaughter. Not to be selfish, but sitting with her and holding her hand while we chat about (very) random topics brings me joy I can’t even describe. Her hugs & kisses whenever I visit her truly feed my heart and soul.
I know the dementia will eventually take its toll and steal my friend. But given the relationship we have and the experiences she and her family have ejnoyed, if I were offered the “3-month” drug, would I take it? Would I have wanted to sweet friend to take it 3 1/2 years ago. No way! I’ve decided to glean the days for all the joy I can find.
Laurie Dunnavant Hugs-nHands, Co. Salt Lake City, UT
I am not certain how many the author has had long term day to day relationships with who have dementia, but I’d like to share that my mother who has had dementia for over 10 years is still “herself”. The difference in opinions about whether life is “worth living while demented” is that if you separate the person & relationship from your expectations, and fear of what is clearly different then dementia may not be the terrifying black hole that would cause someone to choose an early death over a different, but still doable quality of life. Because of how she is within the family and how engaged she is in the community there is no question that her quality of life is still quite good.
Perhaps what people fear is not the loss of certainty that follows with dementia, instead it is the lack of a safe place and people who love you no matter what. No, I would not roll the dice and choose 3 months – – perhaps when we are discussing aging and cognitive function we might consider how our culture treats anyone needing extra care. I see great kindness in my community which seems to be at odds with our media professed obsession with youth. No doubt it would sell less books if the author chose to write about how he continued on with dementia, but it would make a great read and perhaps pay homage to the millions of people who are in the early stages and could use a real role-model.
My first instinct is no. I can’t deny that I’ve seen people suffer terribly from dementia. Especially at the stage when they are so very aware of what they’re losing. And I can’t discount the pain that family members feel when watching a loved one forget them, and “unbecome” the people they used to be. But I’ve also seen so much JOY in people who have dementia. A loss of the everyday restraints on their thoughts and opinions is freeing to them in a sense, and they enjoy people and simple pleasures and their own personal reality. They also bring an amazing amount of joy to the people around them. Is death really preferable? If it is, or if that’s the prevailing perception, then we are really failing to address the quality of life of elders with dementia, and maybe the needs of their family members, too. Only a generation ago, babies with Down’s Syndrome were institutionalized. Now there are families who consider themselves blessed by these babies. I wish we could accomplish that same shift in thinking with elders who have dementia.
When I first read the question, my answer was immediate…gimme the drug and I’ll take the 3 months. But then, I started thinking about the people I work with. I own a personal care agency in Utah and care for elders in their homes, in assisted living settings, and in rehab centers. Some of my clients have Alzheimer’s and they definitely have an impairment I’d never wish on anyone. BUT, at least in this stage, I still see a sense of humor and a love for those around them. One of my “adopted grandma’s” is funny, polite and stubborn. She hates to be bossed around by the CNAs. She still loves to have lipstick on and still hates nail polish. She loves her children even though she can’t remember how many she has. Sometimes I have to remind her of their names but her face lights up when she sees them or when they call. She tells everyone that I’m the “sweetest, nicest girl ever!” OK…I’m over 50 and most of my friends wouldn’t describe me as “sweet!” Ah, but that makes my day to hear that compliment from her!
If my amazing friend had taken the “3-month” drug when the first signs of dementia appeared 3 1/2 years ago, she would have missed so much! Her children visit and call frequently. The joy of this contact lights up her face. A McDonald’s chocolate milk shake is her favorite treat and she doesn’t remember to worry about the calories! She has lived long enough to meet and hold her great-granddaughter. We have pictures of her smiling happily, sitting next to her granddaughter and holding her great-granddaughter. Not to be selfish, but sitting with her and holding her hand while we chat about (very) random topics brings me joy I can’t even describe. Her hugs & kisses whenever I visit her truly feed my heart and soul.
I know the dementia will eventually take its toll and steal my friend. But given the relationship we have and the experiences she and her family have ejnoyed, if I were offered the “3-month” drug, would I take it? Would I have wanted to sweet friend to take it 3 1/2 years ago. No way! I’ve decided to glean the days for all the joy I can find.
Laurie Dunnavant
Hugs-nHands, Co.
Salt Lake City, UT
Me too, in a minute.
I am not certain how many the author has had long term day to day relationships with who have dementia, but I’d like to share that my mother who has had dementia for over 10 years is still “herself”. The difference in opinions about whether life is “worth living while demented” is that if you separate the person & relationship from your expectations, and fear of what is clearly different then dementia may not be the terrifying black hole that would cause someone to choose an early death over a different, but still doable quality of life. Because of how she is within the family and how engaged she is in the community there is no question that her quality of life is still quite good.
Perhaps what people fear is not the loss of certainty that follows with dementia, instead it is the lack of a safe place and people who love you no matter what. No, I would not roll the dice and choose 3 months – – perhaps when we are discussing aging and cognitive function we might consider how our culture treats anyone needing extra care. I see great kindness in my community which seems to be at odds with our media professed obsession with youth. No doubt it would sell less books if the author chose to write about how he continued on with dementia, but it would make a great read and perhaps pay homage to the millions of people who are in the early stages and could use a real role-model.
My first instinct is no. I can’t deny that I’ve seen people suffer terribly from dementia. Especially at the stage when they are so very aware of what they’re losing. And I can’t discount the pain that family members feel when watching a loved one forget them, and “unbecome” the people they used to be. But I’ve also seen so much JOY in people who have dementia. A loss of the everyday restraints on their thoughts and opinions is freeing to them in a sense, and they enjoy people and simple pleasures and their own personal reality. They also bring an amazing amount of joy to the people around them. Is death really preferable? If it is, or if that’s the prevailing perception, then we are really failing to address the quality of life of elders with dementia, and maybe the needs of their family members, too. Only a generation ago, babies with Down’s Syndrome were institutionalized. Now there are families who consider themselves blessed by these babies. I wish we could accomplish that same shift in thinking with elders who have dementia.
A no-brainer for me.
This question reminded me of studies finding that a large majority of people would rather die than enter a nursing home.