Addendum: Three days after writing this, I realized that what I really meant to say is:
It is not for me to say whether or not dementia is an "exciting journey"(or, similarly, whether or not depression is a "spiritual gift").
I don't live with it: I choose to work with people with dementia, and doing Activities is the light side of the disease.
I'll leave up what I originally wrote [below], though I would express it a little differently now.
_____________________________
Clowncar, who has written here about his wife's devastating early-onset Alzheimer's, left a comment this Sunday evening on my post "The Banality of Good" that disturbed me so much, I want to respond to right away.
Clowncar wrote:
Let me be clear:
I See Nothing Good About Dementia
I may write about the good I see in people who live with dementia, I may express excitement about working with them, but I would never say anything so feel-good-goopy as "it's an exciting journey." Dementia is like the Borg on Star Trek-- it assimilates brains, and resistance is futile.
There are lots of kinds of dementia, and how they work varies, but I know that if I should get dementia (godforbid), essentially my brain is going to start to die (faster than it already is). I can't think of a single good thing about that, myself, even if I were lucky enough to get a relatively "easy" form of it where I saw happy bunnies all the time.
No. I do not think dementia is "an exciting journey."
To me, such thinking is akin to telling someone who lives with depression that it's some sort of spiritual gift, or saying that Ernest Hemingway demonstrates that alcoholism helps you be a better writer.
(In fact, alcohol can cause dementia. "Wet brain" is one of its nicknames. How helpful is that?)
The way I see it, we humans may experience or create good or exciting things in the face of suffering and disease, but suffering and disease are not in themselves Good. We may meet suffering and pain and loss with bravery, grace, humor, and other pretty impressive tools, but it's not the disease of suffering that caused those things.
(And if we're not all noble-in-the-face-of-death, that doesn't mean we're not Good! Pain sneaks in and steals our best tools real quick. How noble are you--or is anybody-- after a few hours of stomach flu?)
I'm interested that some weirdly resilient people do seem to be able to function pretty well even in the most horrific circumstances.
Like Alice Herz-Sommer > > >
the musician and concentration camp survivor who was the subject of an Oscar-winning documentary The Lady in Number Six [links to trailer].
She said she was happy when she played music in the Theresienstadt concentration camp under Nazi orders. It's bizarre to hear her say, "Every day in life is beautiful. Every day."
My point here is, just because Herz-Sommer found beauty while living in a concentration camp doesn't mean the camp gets any credit for that beauty.
Similarly, if a person is able to create art while living with dementia, of if some people with dementia don't suffer half as badly as others, that doesn't imply anything good about dementia.
What I have been trying to say is that as people's brains are undergoing destruction, THEY ARE STILL PEOPLE.
They are still themselves---some more, some less, some for longer, some not for long at all before their brains are gone.
And I believe this needs saying because I encounter so many people who do not know it.
I want to say it because in the senior residence where I work, I see people who don't have dementia avoiding the people who do as if they have the plague.
I want to counter the perception that people with dementia don't exist as people anymore.
I want to question the preconception that if you get dementia you may as well throw in the towel right away (as my own father has told me he will do).
Maybe at least wait a little while, like Terry Pratchett [links to Neil Gaiman on TP]. Diagnosed in 2007 with posterior cortical atrophy, a rare form of early onset Alzheimer's, Pratchett continues to write, though he cancelled an appearance in 2014, saying, "the Embuggerance is finally catching up with me' "
Further, I want to refute the passive attitude that we can do nothing beyond funding research (though of course that's hugely important!), when, in fact, there's lots of everyday stuff we could do for those of us with dementia or with any other sort of physical or mental hurts or limitations.
No, and no again, I do not see dementia as an "exciting journey."
But, yes, sometimes I am excited (and have said as much--maybe giving the wrong impression) when the people I work with who live with dementia are able to show their individuality; for instance I am excited when someone in the Sewing Group creates a quilt square that is different from other people's. Not because that proves that dementia is exciting, but because it shows there is a person in there, behind the disease, peeking out from among the tangles.
Perhaps at some point the disease will strip that personality away completely. At some point, death may be preferable.
I hesitate here, but it seems to me that ending one's life should be legal. If I (godforbid again) were ever to reach that point, I would want to end my life well, painlessly, and with some dignity, and not risk making a bad job of it, alone.
Pratchett said, "rather than let Alzheimer's take me, I would take it. I would live my life as ever to the full and die, before the disease mounted its last attack, in my own home, in a chair on the lawn, with a brandy in my hand to wash down whatever modern version of the 'Brompton cocktail' some helpful medic could supply. And with Thomas Tallis on my iPod [listen to Tallis's choral work Spem in Alium and weep], I would shake hands with Death.""
I am sorry if I've ever implied dementia is an "exciting journey."
I cannot think of anything good about having a dying brain.
I can think of a lot of good about people who have dying brains.
It is not for me to say whether or not dementia is an "exciting journey"(or, similarly, whether or not depression is a "spiritual gift").
I don't live with it: I choose to work with people with dementia, and doing Activities is the light side of the disease.
I'll leave up what I originally wrote [below], though I would express it a little differently now.
_____________________________
Clowncar, who has written here about his wife's devastating early-onset Alzheimer's, left a comment this Sunday evening on my post "The Banality of Good" that disturbed me so much, I want to respond to right away.
Clowncar wrote:
"As much as I'd like to embrace the "dementia as a frightening but exciting journey" thing, I find it more terrifying than old age, or life itself. Yes, it takes a village, and we could all do more to help each other. But it is a terrifying journey, for both the patient and the caretaker, and utterly draining."I am disturbed that it seems I've been careless enough to imply that there's anything "exciting" about a disease that strangles or suffocates our brains.
Let me be clear:
I See Nothing Good About Dementia
I may write about the good I see in people who live with dementia, I may express excitement about working with them, but I would never say anything so feel-good-goopy as "it's an exciting journey." Dementia is like the Borg on Star Trek-- it assimilates brains, and resistance is futile.
There are lots of kinds of dementia, and how they work varies, but I know that if I should get dementia (godforbid), essentially my brain is going to start to die (faster than it already is). I can't think of a single good thing about that, myself, even if I were lucky enough to get a relatively "easy" form of it where I saw happy bunnies all the time.
No. I do not think dementia is "an exciting journey."
To me, such thinking is akin to telling someone who lives with depression that it's some sort of spiritual gift, or saying that Ernest Hemingway demonstrates that alcoholism helps you be a better writer.
(In fact, alcohol can cause dementia. "Wet brain" is one of its nicknames. How helpful is that?)
The way I see it, we humans may experience or create good or exciting things in the face of suffering and disease, but suffering and disease are not in themselves Good. We may meet suffering and pain and loss with bravery, grace, humor, and other pretty impressive tools, but it's not the disease of suffering that caused those things.
(And if we're not all noble-in-the-face-of-death, that doesn't mean we're not Good! Pain sneaks in and steals our best tools real quick. How noble are you--or is anybody-- after a few hours of stomach flu?)
Like Alice Herz-Sommer > > >
the musician and concentration camp survivor who was the subject of an Oscar-winning documentary The Lady in Number Six [links to trailer].
She said she was happy when she played music in the Theresienstadt concentration camp under Nazi orders. It's bizarre to hear her say, "Every day in life is beautiful. Every day."
My point here is, just because Herz-Sommer found beauty while living in a concentration camp doesn't mean the camp gets any credit for that beauty.
Similarly, if a person is able to create art while living with dementia, of if some people with dementia don't suffer half as badly as others, that doesn't imply anything good about dementia.
What I have been trying to say is that as people's brains are undergoing destruction, THEY ARE STILL PEOPLE.
They are still themselves---some more, some less, some for longer, some not for long at all before their brains are gone.
And I believe this needs saying because I encounter so many people who do not know it.
I want to say it because in the senior residence where I work, I see people who don't have dementia avoiding the people who do as if they have the plague.
I want to counter the perception that people with dementia don't exist as people anymore.
I want to question the preconception that if you get dementia you may as well throw in the towel right away (as my own father has told me he will do).
Maybe at least wait a little while, like Terry Pratchett [links to Neil Gaiman on TP]. Diagnosed in 2007 with posterior cortical atrophy, a rare form of early onset Alzheimer's, Pratchett continues to write, though he cancelled an appearance in 2014, saying, "the Embuggerance is finally catching up with me' "
Further, I want to refute the passive attitude that we can do nothing beyond funding research (though of course that's hugely important!), when, in fact, there's lots of everyday stuff we could do for those of us with dementia or with any other sort of physical or mental hurts or limitations.
No, and no again, I do not see dementia as an "exciting journey."
But, yes, sometimes I am excited (and have said as much--maybe giving the wrong impression) when the people I work with who live with dementia are able to show their individuality; for instance I am excited when someone in the Sewing Group creates a quilt square that is different from other people's. Not because that proves that dementia is exciting, but because it shows there is a person in there, behind the disease, peeking out from among the tangles.
Perhaps at some point the disease will strip that personality away completely. At some point, death may be preferable.
I hesitate here, but it seems to me that ending one's life should be legal. If I (godforbid again) were ever to reach that point, I would want to end my life well, painlessly, and with some dignity, and not risk making a bad job of it, alone.
Pratchett said, "rather than let Alzheimer's take me, I would take it. I would live my life as ever to the full and die, before the disease mounted its last attack, in my own home, in a chair on the lawn, with a brandy in my hand to wash down whatever modern version of the 'Brompton cocktail' some helpful medic could supply. And with Thomas Tallis on my iPod [listen to Tallis's choral work Spem in Alium and weep], I would shake hands with Death.""
I am sorry if I've ever implied dementia is an "exciting journey."
I cannot think of anything good about having a dying brain.
I can think of a lot of good about people who have dying brains.
