Sunday, March 8, 2015

I would never say, "Dementia Is an Exciting Journey".

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:
"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?)

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.


The Crow said...

Clowncar's pain permeates his words and makes me weep for him and his wife. That is all I can offer either of them.

Fresca, I know you never intended anything but empathy and compassion in all that you've written. I particularly have welcomed reading about your journey as your residents have taught you, by default, unwittingly, about all the forms of diminished mental capacity we human beings might someday encounter, whether through caring for others whose brains are eaten by disease, or if/when it is our own brains being destroyed.

I am in no position to know what Clowncar truly felt when writing to you - none of us can know. However, I can hazard a guess. There are moments when the pain one feels overcomes the gracious, good and forgiving person we are 99% of the time and we lose our grip on that person; we let the overwhelming pain speak for us, and it might not say exactly what we intended. Of course, I am speaking from my own experience here, which may not apply to this situation at all.

Jeff, my heart is aching for you and your daughters, despite the fact I don't know you. You made a connection with me because of what you've written "from the front lines." Please don't stop writing or letting the rest of us read your family's story. We need to know these things, need to prepare for our futures and you are the best war correspondent we could have.

Fresca, for the same reason, those of us who might end up like your residents or their families, we need to be reminded that until the brain reaches the destruction of that last pathway, that final synapse failure, there is still a human being inside you needs the interactions the rest of us can provide - like what Jeff does every day for his wife and their daughters.

Thank you both so very much.

Fresca said...

Oh, Crow, thank you so much for writing right away, and for writing so thoughtfully and kindly. I am comforted by your point of view.

Truly my heart is hurting tonight (I need to breathe deep and expand my constricted chest muscles), this is such a painful subject and I'm unhappy to think I might have caused more pain...

I do feel torn sometimes when I write about dementia because I know some people who read my words may be facing early stages of dementia (including the husband of an acquaintance), while many others, like Jeff, love or at least know someone living with dementia, and the experiences are different---
to share hope with one is not, I hope, to disregard the suffering of the other.

I'm glad you say my championing of human interaction helps fulfill a need.

You know, I am relatively new to this---I've only been working in Activities for 5 months.
I'm mostly going on intuition. Of course I research a lot, but I need to know so much more.
This coming Saturday I am going to an all-day conference on Alzheimer's & other dementias---I'm excited (yes) that it includes a panel of people with early-stage Alz. and the sessions are meant to be accessible to everybody (people with and without dementia).

This is important stuff---really gets at the heart of what it is to be human.
Thank you, thank you, for writing and helping me think it through.

Julia said...

I know what you are saying, Fresca. I think.

Where I am, in the thick of things still, I *do* find joy that is only possible via dementia. For me, I get to meet a different side of my father, a side that isn't burdened by taxes and schedules and the encumbrances of adulthood. I would love to have the kind of father most of my friends still have, able to give advice and navigate networks and check up on me. But I also have friends who would love to have the kind of parent I have, who is loving and supportive and a very present listener.

I would never say categorically there is joy in dementia. There are too many forms and I certainly have been witness to much more destructive and painful versions than the one I am currently seeing. But if I convince myself that death is not the worst thing ever (if it is, then every sunset and every birthday and every marker of time becomes grief-laden), and if I can set aside the pain I feel at the loss of who-my-father-was, then yes, there IS joy in dementia-as-I-am-experiencing-it that would not be possible without it. There is the joy of being able to share something that means a lot to me for the first time over and over with one of the most important people in my life. There is joy in seeing my father's child-self, playful and sassy and easy-going. There is joy in being able to care for him as he cared for me (and even get feedback on how I'm doing!). There is joy in sharing the same little happinesses with him over and over, because each time they are new to him.

I see parallels with the worries of parents of children with special needs about the pain they or their children experience because of the special needs. There are two forms of pain for people with special needs. The first is the inherent suffering or cost--a decreased lifespan, bodily or mental suffering, etc. The second is the external suffering/cost--a society that devalues someone who is different, or who doesn't support caretaking, etc. In my current experience of dementia (best case scenario! I do not mean to deny the reality of Clowncar's (and others') very painful experiences), the pain is almost entirely external. For me, with this particular iteration of dementia, the terror of the journey is not the dementia itself, but the ways in which we (collectively, individually) respond and my own grief in loss.

Sometimes we pathologize people when we should be pathologizing society. My father's dementia is not causing him pain, mental or physical (not to say that this won't change with time). The pain comes from outside, from society's lack of supports, from our own expectations of what we want from a person (so human!), from our own imperfect coping mechanisms, from our ability to plan for the future and remember the past and feel loss at what-was and predict grief at what-is-to-come.

I want to make clear that I am not challenging in any way Clowncar's experience, and the ways in which unexpected dementia must be even harder. Knowing since childhood how much older my father is than my peers' fathers means that I have had time to think about what might happen, to learn from others who are ahead of me, and to know that I have bonus-time-father right now. Like many brain-issues, the problem is probably how little we really know and how much we lump such disparate experiences together, all of us jostling to understand what we're going through under this immense and undefined medical umbrella of "dementia."

bink said...

Very nice post.

I agree there is nothing good about having dementia, but having worked with people with dementia, that I also agree that people with dementia are still people-- and it is always horror all the time for everyone.

I am always reminded of very sane resident in my nursing home who CHOSE to live on the "senile and confused" floor. She said "people were more fun" there. Later, having worked on the other floors--where everyone was always bitching, moaning, whining (with good reason, but still...) I had to agree with her. I certainly preferred working on that floor, so I can see why she preferred to live on it.

Fresca said...

JULIA: And thank YOU for writing from a whole different perspective!

What I was saying was that I would never think anything so facile and feel-good-goopy as "Dementia is a exciting journey."
I got quite upset and overreacted when Clowncar's comment implied I was saying that.
I felt both defensive and also very worried that I'd caused/increased someone's pain--something I am sensitive about from my experience growing up in the shadow of my mother's pain.

I'm going to chill out and stop trying to say anything definitive about dementia:
after all, the way it affects a person's brain is famously different for every single person who gets it (and therefore for the people who know them too).

And you are not the only person I've heard say dementia has created a GOOD change in a parent...
That is lucky, lucky, lucky! (Luck of the Irish?)

I agree wholeheartedly with how you separate internal from external suffering/cost.
That's what I was trying to get at in the "Banality of Good" post---that for some people I know with dementia, most of their pain is external--they could live well if they had external supports which, alas, are lacking.

This ^ is a social/political issue (external), not just a private matter (internal).
And it applies to all sorts of people who are not John Wayne.

"Sometimes we pathologize people when we should be pathologizing society."

You write, "if I can set aside the pain I feel at the loss of who-my-father-was, then yes, there IS joy in dementia-as-I-am-experiencing-it."

This ^ seems key to me:
the ability to set aside one's own pain at some point. I see family members who cannot set aside their personal loss and enter into the new reality, where their person may actually be fairly happy.
(I'm thinking of a couple specific examples.)

The book I'd mentioned a while ago about a Montessori approach to dementia said, if you are a care-partner you have to "throw your ego under a bus."

This, of course, is asking a huge, huge amount of anyone!
Like, Instant Buddhism:
all you have to do is drop your ego and replace it with Acceptance, Patience, Compassion...
I certainly was never able to do that with my mother, though I've learned to do it a little better now, partly, I think, from seeing how helpful it would have been if I could've done it then, for me as much as for her.

We're definitely entering into the philosophy and practice of Suffering here...
I will continue to muse on this and try to write stuff, daring to risk that I'll get it "wrong".

But I will never say, "Dementia is an exciting journey." :)

Fresca said...

BINK: Thanks for weighing in. I value your perspective as someone who has worked in nursing homes.
(Back in the Bad Old Days, too.)

Did you mean to write, " it is always horror all the time for everyone"?
Or did you mean to add a "not" in there:
"it is [not] always horror..."?
I think you did, based on what you have said to me in the past and what you go on to write.
like your resident who chose to live on the "confused" floor---that it can be better than living among the folks with healthy brains who are not well equipped otherwise to handle aging.
NOT to romanticize dementia, godno! But aging is hard even without dementia, and some of the independent-living resident are quite unpleasantly bitter and sour to everyone, unable to throw their egos under the bus and enter into their new reality (referring to something I said to Julia, above).
It's hard.

Oy. I can't think about this anymore right now--but I will continue to think and write.
Thanks again!

Clowncar said...

I wasn't trying to make you feel guilty or facile, Fresca, and I apologze for coming across that way. You are one of the warmest and kindest people I know (and I haven't seen you in person in like 40 years!). That said, I had just gotten back from visiting my wife, and while often it doesn't bother me, it was tearing me up when I wrote the comment. There was a period of time that was kind of a "honeymoon" period for us, and there was some joy to be found (and it is important to search for joy while caregiving, which I think is the point of your post). Right now it is pretty ugly, though. And has been for awhile. I dearly love you, F, and love your writing. AND you turned me on to David Foster Wallace. So, again, my apologies for a very emotional, and not fully thought out, reaction to your post.

Zhoen said...

Some parts of life just are, good and bad don't really apply.

Fresca said...

COWNCAR: Thanks for explaining where you were coming from (literally)---ohgod, so hard...
But I'm glad you wrote what you did:
it pushed me to get clear about something I've been thrashing over.
After making even more of a hash of it, in some says, here's what finally came clear to me (and I just posted this as its own post AND added it at the beginning of this post):

"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").

People may who live with it may say if it is or not for them, but I don't live with it; I choose to work with people with dementia, and Activities is on the more "exciting" side.
I guess I'll leave up what I originally wrote, with this added, to show the evolution of my thinking, though I would say it differently now."
Thank you for your kind words, too. I love you too!

Fresca said...

ZHOEN: Very Zen!
Like that Rumi quote I see a lot, something like:
"There is a field beyond good and bad. I'll meet you there."

I like it but personally I'm still crashing about in the forest! :)

bink said...

Definitely meant to say NOT horror all the time.

Loved Julia's comments. Funny, I didn't see them there the first time I commented...

Julia said...

I would take my father-as-he-was back in a second, but that is primarily for MY benefit as his child, not for his benefit as a person. Luckily he was never a parent who was so caught up in adulthood that he didn't have time to listen or chat, but he is free from those worries right now, which is not a bad thing (very "in the moment" of him, you know?). But I wouldn't say that he's "better" with dementia. Just different and some of those differences, like being present in the moment, are the kinds that the rest of us seek out.

I have a relative whose parent's dementia DID allow for healing within their relationship--judgment and anger fell away. Unfortunately, the structures of societal care were extremely detrimental (the parent was treated off label with heavy anti-psychotics without family consent/knowledge for over a year, with bad consequences, among other violations). But I've also watched dementia itself change a loving person's personality substantially. You are so right. Just so so many ways it can look, as variable as the people who develop it.

The other thing is that I think there is a huge difference in relationship of caretaker to cared-for. I stumbled across a study that suggested partners often had a much harder time of it than children, and in my observations, this is likely true. Children generally have the advantage of relative youth, a lifetime of knowing/learning an individual's personality, and some awareness that their parents will likely predecease them. The loss isn't of a theoretical equal and isn't fraught in the same way. And perhaps in reference to that book, the child-parent ego has a past where they were barely differentiated--it's possible that some of us have that map.

In the case of "instant buddhism" -- I totally agree! Caretaking the dying, and not just those with dementia, is a course in it. There is no time because the future is so unknown and the past is so long ago and so foreign. I had counselors tell me to "just live in the moment" which wasn't a problem for me--I have years of practice with that. But living in the moment with caretaking while also planning? working? bills? time? Flipping in and out of those modes? At the hardest points of caretaking, sending the rent check in on time rather than a day late just seems absurd. Really? We're dealing with this kind of stripped-bare humanness and you're telling me that this clock-based paperwork, upon which no one's survival or even basic comfort depends, matters?

As always, more thoughts than common sense or time.

Fresca said...

BINK: Yes, that's what I thought you meant to say:
"I also agree that people with dementia are still people-- and it is [NOT] always horror all the time for everyone."

JULIA: Thank your for your long, thoughtful reply.

The people I've heard say their parent was "better" with dementia were people whose parents were pretty awful as parents.
And, as you say, sometimes the change is for the worse--dementia can turn a sweet-natured person nasty.

You are indeed lucky to have a good relationship with your father, both before and after.

Interesting the study that says children may adjust better than spouses when their parent (v. spouse) develops dementia---that makes sense, though I think it's not always true, of course. In my short time in this work, I've seen spouses and grown children go both ways.
Everything about this disease is, as Clowncar says elsewhere, a moving target.