Why Blog Alzheimer's? The Myth of Dignity

My friend Adam Kasanof, who's guest-posted here in the past, sent me a link to this article in The Spectator.  It's a few months old but this was the first I'd seen it, so to me it was fresh.

The piece, by Carol Sarler, complains about a series of Alzheimer's memoirs that have been published over the past several years - John Bayley's (about Iris Murdoch), and other books and articles by Alan Bennett, Roy Hattersley, Carol Thatcher (about Margaret Thatcher) and more.

According to Sarler, it all adds up to "a pornography of incontinence."  While she agrees that...

nobody would suggest we ignore these things. With 700,000 Alzheimer’s patients [in the UK] and with funding running at a fraction of that afforded to all our cancers and heart diseases combined, public awareness is a necessary combatant. And no doubt it is the raising of such awareness that most of our tell-tales would say is their motive.

Nevertheless...

The question is, are the tales properly theirs [the caregivers'] to tell?

She objects to the graphic serving-up of "harrowing stories."

The Alzheimer’s patient, having his or her intimacies hung out to dry under the grim gaze of a prurient rabble, retains no choice at all. And as for whether they would so wish, I find it inconceivable that any would opt for their dignity to be stripped in such a manner that nobody could possibly think of them in quite the same way again.

She's prefer that we act the way Nancy Reagan did.

When her husband’s Alzheimer’s kicked in, he issued a dignified statement of farewell and the two of them retreated, literally and figuratively, behind tall gates. From then on, she guarded his privacy with the ferocity of a tigress; when, 10 years later, he died, the only pictures available still showed the suspiciously white grin, peculiarly dark hair and clean, clear, calculating eyes. Memories remained intact, as he (and you and I?) would have wished.

It’s not as if there aren’t ways to raise awareness of disease without making freak shows of its victims.

Fictionalizing and composite characters, she suggests, would be a better way to get the realities while preserving and protecting memories of the patients when they were whole.

Well, maybe.

I don't want to dismiss the argument out of hand.  I'm sure that anyone who writes about a loved one with Alzheimer's thinks about this issue.  I know I do.  Every time I post about my father and his raving and his Depends, I remember him the way he used to be - a difficult person, mind you, but an intact, competent one - and wonder what I'm doing.  For the longest time, I've meant to build up a portrait of him when he was whole - with the help of a few of his remaining friends, colleagues and relatives who've either volunteered their services, or would.  But the present keeps getting in the way and I'm more than a year late in getting started.  So I keep hanging him out.  A kind of exploitation?  It could be.

But on the other hand, I go over to the Alzheimer's's Association's Caregivers Forum and come across a thread like this one, where caregivers report on the amazingly stupid things people have said to them.  There are some familiar ones and some new zingers, but the one that got me was this:

One of the choir members came to the visitation and said, "We all knew your mom was senile and stuff, but what did she actually die from?" I was very well behaved and just said Alzheimer's. She then asked how someone dies from memory loss.

See, that's the first problem.  If you draw a veil over Alzheimer's - if make it your only priority to protect the dignity of the patient - the result is that no one knows what you're dealing with, because no one knows what Alzheimer's is.  I didn't until I got into it.  The professional organizations don't help.  Groups like the Alzheimer's Association do a lot of good and raise a lot of money, but they also perpetuate a version of Alzheimer's that's mainly sentimental twaddle.  It's a memory disorder.  It's "the forgetting."  it's "the long goodbye."  No it's not.  It's the total destruction of the mind and the personality.  It's the annihilation of cognition, one step at a time, with the patient just aware enough all the while that it becomes a form of torture.  But you don't get that from the popular version.  Nancy Reagan drew a protective veil over her husband - understandably - and the result is that I had no idea what was going on with him.  I envisioned - as I think most people do - an old man getting increasingly vague, and not remembering the names and the faces of the people who came to see him, or the things that had happened to him, but otherwise more or less intact.  In other words, I thought it was a gentle slow fade where a still recognizable person would turn to an old colleague and say, "Who are you?", which was poignant - as opposed to, say, mistaking the visitor's fountain pen for a straw and then trying to put it in his own eye.  I have no idea if anything like that happened.  But knowing what I know now, I think it might have.

The drug companies play into the soft-focus version of Alzheimer's, too.  The ads for Aricept and other Alzheimer's drugs usually end with a genial elderly person gardening or getting ready for holiday entertaining, or the adult children going down the walk and feeling relieved because they've been able to leave Dad on his own in his ranch house. 

The more accurate version of Alzheimer's wouldn't involve holiday gatherings and it wouldn't be be a sad reverie about forgetting.  It'd be a zombie movie. 

My objection to the standard-issue portrayal of Alzheimer's isn't just a matter of style.  It has real consequences.  Please note that in the whole sorry fiasco that passes for a healthcare reform debate, there hasn't been one significant mention of long-term care.  That's because there's no sense of urgency about Alzheimer's or the other chronic diseases.  And that, in turn, is because no one's sufficiently frightened of them.  In the abstract, yes.  And it's terribly sad, of course, Grandma slowly fading away like that.  But abstract understanding and a notion about slow fading don't command attention or resources.

It's not just a policy issue.  The sentimental, slow-fade take on Alzheimer's colors the whole response of the medical profession.  More than once I've had doctors tell me that my father is "in perfect health except for the Alzheimer's."  There's a similar comment in the Caregivers' Forum thread, by the way.  Can you imagine anyone saying, "He's in perfect health except for the fact that his heart is torn apart and dessicated and a third of its normal size"?  Wouldn't happen.  But what passes for Alzheimer's awareness is for the most part a relentless form of not getting it.

OK.  So attention must be paid.  Sarler concedes this.  It's just that she'd like the attention to be generated in some sort of stripped-down anonymous way, without exposing the people involved.  Her concern about exposure is understandable, and as noted, there's an extent to which I share it.  But - and this is the second, more critical problem - when she talks about the dignity of the patients, I suspect she isn't thinking about them or their dignity at all.  She's thinking about her own comfort and her own preferences.  Dignity is a myth she uses to protect herself.  Listen again and note the phrasing:

I find it inconceivable that any would opt for their dignity to be stripped in such a manner that nobody could possibly think of them in quite the same way again.

Cloaked in this admirable-seeming concern about the patient's rights is the real demand - I want to be able to think of those people in the way I want to think of them, not the way they are.

Now, to me, dignity doesn't come from taking a whole aspect of life and lopping it off and burying it someplace.  It comes from embracing the whole picture.  It's this tendency to sanitize and sentimentalize - and also to fetishize intellect and productivity - that means that we bury our elderly alive and fail to address any of their, or our, really serious problems.

In other words, there's Sarler's version of dignity, which is the lopsided version of life, and then there's real dignity, which involves looking at the whole thing as steadily and clearly as you can.

There was a sense in which my father did this, as a general approach to life, and also because he was a reporter. He wasn't prominent, and he didn't have high-flown thoughts about journalism, but he had a basic level of faith that you could make life better by telling the truth.  I'm a writer because he was a writer and I'd like to think there's some form of consistency and continuity in my trying to do the same thing.  Maybe I'm flattering myself or trying to build a myth of my own, but I hope not.

As an aside, my father's commitment to truth-telling wasn't wasn't universal or consistent.  While my parents could be clear-sighted people, they were also of the generation that didn't talk about cancer or mention it by name.  I still remember from my childhood their referring in a hushed way to someone who had "the Big C" or "the bad one."  But when my mother got her own cancer, they were forthright about it.  That helped.

And that's what I'm trying to do here.  It's possible I'm being self-serving, and it's possible I'm serving my father up on the altar of my own ego or of some mistaken cause, but I think you have to tell the whole story, the whole truth, in as much detail as possible, because otherwise a fact like Alzheimer's isn't real to people and they don't do anything about it and nothing ever changes.  And also because life is life, and life has Alzheimer's in it, and I think we're here to recognize that and work with that.

In one of my favorite books - Flight to Arras - by one of my favorite authors - Antoine de Saint-Exupery - there's this passage.  It takes place during the Nazi invasion of France, where, as a French reconnaissance pilot, Saint-Exupery has just been ordered on a mission that's pretty much guaranteed to lead to his death:

It would be easy to write a couple of fraudulent pages out of the contrast between this shining spring day, the ripening fruit, the chicks filling plumply out in the barnyard, the rising wheat and death at our elbow. I shall not write that couple of pages because I see no reason why the peace of a spring day should constitute a contradiction of the idea of death. Why should the sweetness of life be a matter for irony?

Why indeed?

My father is a real person, and it's because he's real that he has dignity.  Now he's a real person with Alzheimer's.

As Joe Klecko used to say in a TV commercial, "You got a problem with that?"

 

Comments

[julie]

Brilliant! I have to agree totally.

[crella]

Yes. Until my father-in-law had it and I was caring for him a great deal, I had no idea what else 'comes along' with the AD diagnosis. I too, thought AD was just memory loss. I couldn't understand at first and did not anticipate, the swallowing difficulties or the contractures he started to develop in the later stages...for a while I thought 'he must have something else' in addition to the Alzheimer's.

Too many people think of it as just fuzzy thinking.

[Shu]

Wonderfully said. Amen.

Gratefully,
Shu

[Kim Bledsoe]

That was simply fantastic..thank you so much for writing it..and I, too add my AMEN!!

forum friend,
bledsoe

[Alan G. Ampolsk]

Thanks to everyone who commented. It's interesting - often you have a vague thought but can't work all the way through it until you come up against a strong objection or an attack. So in that sense I'm grateful for the Sarler piece. She got me thinking, at least...

[Amy]

Wonderfully and beautifully said. Thank you.

[hautkrebs]

It's interesting - often you have a vague thought but can't work all the way through it until you come up against a strong objection or an attack.

[New York liposuctions]

This is a relevant and compassionate article, and one of the best I have read. I fear dementia more than cancer.

[Eleanor Mulvey]

This is the most sensible and well-reasoned article I have read on the subject. My husband is well along his Alzheimer's path now, but when he was diagnosed I made some small effort of my own to advertise his condition. He is quite well known, and I was hoping to raise awareness.I had help from a small number of journalists who did a good job and tried to listen to what I wanted, although they found it too difficult to drop the word "battle". The press is shamefully unable to not use their corny shock tactics, and we must educate them.

[coach handbags]

Sweet post David, you make a tremendous point about loving the job you do. It's amazing how much better you work and how much more creative your thinking gets when you're really engaged. Hope to read more great blogs like this!

[True Religion Jeans]

Naw, Sparcoil we've got the goods on you and your Sybil personas...and we'll just play along and let you be your silly duo.

[woolrich outlet]

Every horse thinks its own pack heaviest