October 6, 2006

On the non-being of Alzheimers

Category: Alzheimers,Health,Politics — Biella @ 8:10 am

So it has been a long while since I wrote about my mother and her Alzheimers/posterior cortical atophy. The news is not all that good. Now that she has been under this state for a number of years now, I am finding more and more of my female friends are under similar situations of having to take care, sometimes from afar, of an elderly parent. This summer I got to spend a few weeks with a friend whose mother is also slipping away due to neurogenerative disorder. We talked a lot about our and our mother’s lives. One thing we agreed wholeheartedly about was that with these types of illnesses, the past takes on a new found importance as “easier times.” Once the present starts to arrive on the scene of life and extreme dis-ease, the past seem a lot rosier than before, because well, usually things only seem to go one way: worse.

You retroactively long for the past, though it was experienced once as quite difficult but you realize that it was better than it is now. While my mom’s memory problems have not worsened that much, she has a host of new physical symptoms that really cut into her quality of life, making the past seem almost idyllic. And once you go through one or two of the phases, you can’t help wonder, constantly, how much worse will it get? In leaves you in quite an unmoored state of low-grade anxiety, because you just can’t have faith that things will get better. You only hope that the things will unravel slowly enough so that the shocks are somewhat easier to absorb for her, for me, for my sister. And all of this is hard, hard to watch someone go through, and hard to know that in some ways, this can only get worse because you just know rock bottom has not been reached and you start to wonder what will rock bottom even be? But perhaps what makes all of it far worse is how my mother is treated by ex-friends, by doctors, by society at large.

To have Alzheimer’s, is socially deadly, it is social death. Once people know of your condition, people start to treat you as if you are not really there, no longer a person, no longer able to cognize or much less understand the world around you. And indeed, it is silly to deny the existence of severe new limitations. But once you spend enough time with a person with Alzheimer’s, it is clear that they perceive (and really feel) a lot more than one first may expect. It is a grave mistake to put them behind the barbed wire of invalidity and non-being as I think seems to happen, almost automatically. Memory and language are not the only conduits for cognition yet we fetichize them so much so as they pivotal markers of “being,” that when they start slipping, we seem to mistakenly think the entire person goes with them.

This marking of non-being is everywhere. Most of her friends and family have dropped off the face of the universe; when I take her to church, “churchgoers” will make sure she takes the holy communion but otherwise treat her as if she can’t understand at all, instead of trying to going the extra mile to share in the ways she clearly can, and then there is her doctor. He is the worst.

He just tends to treat her as some clay lump, putting her in situations that clearly make her feel bad but of course, his medical gaze can’t register it at all. For example, every time she goes in, he makes her attempt to “draw” some squares and circles and houses…. And I am not sure why he does this because she has not been able to do it for years. When he makes her do it (and she gives in because well, you are supposed to follow doctors orders, right?) she is clearly embarrassed that she can’t do it, so what is the purpose? To confirm what is already plainly obvious, and remind her in BOLD EMPAHSIS of a new limitation?

He is not overly fond of me because I tend to be well-informed and as result finds me annoying and threatening. Last time my sister took her to the doctor, I had her bring a list of possible medications that may help control her excessive saliva, which is one of these new symptoms that is ruining her life. Though they were taken as suggestions (not as demands) and because he did not take this symptom seriously last time, he told my sister that just because “your sister has a PhD, does not mean she knows anything about medicine.” And he is right I don’t in the way he does, but it is by being well-informed that my mom was diagnosed in the first place and how we have averted other problems. I guess he selectively forgot that it was I who brought in the Olive Sacks article from the New Yorker on Posterior Cortical Atrophy that directly led to her diagnosis (after 2 years of trying to figure out why she could not see anymore and everyone just treated her as batty) and it was I who finally figured out that one of the medicines he had prescribed, Razadyne, was severely aggravating her saliva problem (he apparently never took her first concerns over her saliva very seriously, otherwise why would he prescribe a medication with saliva production as one of the known side-effects)…

Finally look around you… People with Alzheimer’s are rarely taken out of their house, if they still live there and surely not out of the nursing homes where many spend their last years. In fact, when my sister and I take her out (and we do quite a bit), you should just see the look on people’s faces. Their eyes light up, I think because, it is a rare sighting, and they just can’t believe how great it is that we have SACRAFICED to take her out. It is as if they saw Mother Teresa, back on earth, in some great act of benevolence (ok and she is pretty cute too, especially without her dentures).

She has about 2 friends who do make an effort to keep in touch. One is her oldest friend from Venezuela, who calls at least every month and then the other is an artist friend, who lives in PR and has known his fair share of tragedy, and as result is perhaps more empathetic. When they call or visit, she is overjoyed. Of course. You can joke with her quite easily and she loves to tell stories (though she get really frustrated at times when she has problems saying words). Not only is it a nice distraction, a form of entertainment, a moment of connection, making you forget the pains, psychic and physical, that saturate your life under Alzheimer’s but it is also a powerful social and moral message. It states that you still matter, are worthy even as other forces in life are tugging away at your being.

To be more generous, I understand why some of her friends, especially those who are older, avoid her. Her presence is a powerful signpost for their possible future. It is easier to exist in denial than to be empathetic, patient, and have to at some level confront a very existential question about a future that awaits all of us. It is like a more raw form of Sartre. But this is perhaps the very reason why sequestering those with this condition is a grave social mistake. It is worth facing it, contemplating it some, otherwise it will be impossible to forge more empathetic responses.


  1. Two short stories related to your posting, about Karin breaking up taboos and about my grandpa, who remained very much a person throughout his illness;

    Karin is ‘outing’ her taboo-disease in the Netherlands at the moment, trying to break through the same odd barriers. She has breast cancer and has had her right breast amputated. People find it so difficult to deal with the fact that she had cancer, no hair, one breast that they do not know how to respond properly. Her pictures and story in dutch are here:

    How can you be ill without becoming a patient?

    The mental results of alzheimer seem make you a non-person; if you cannot think or communicate what you think you are in the dark. My Grandpa who in the early days could outperform computers in difficult calculations (the damn thing filled a room! he said, after admitting those computers had become more interesting than he ‘d ever expected) got Alzheimer, or a rare agressive variety. Being a former sailer he has learned us all quite a few new expressions, which popped up from behind his everyday ‘mathematician’-look. Without his brain, what could he do? After filling the house with little notes, which he could not understand anymore he finally gave up.

    It was so difficult to see him in an institution; but with my grandma having a burn out after taking care of him, with irregular moods and mental situation for several years there seemed to be not other solution. Having lost the one tool you are proud and happy to use – in a way means losing most of what makes *you*.

    It might fool the superficial observer; one of the last times I was with my grandpa he was trying to figure out the roman mathematic system, asking the signs for each number. Even in his darkest days he could cling to his cherised subject – still playing with numbers as he always had done; as he always was.

    Comment by Niels — October 12, 2006 @ 2:07 pm

  2. the link to Karins weblog: http://blogger.xs4all.nl/kspaink/archive/2006/09/26/126025.aspx

    Comment by Niels — October 12, 2006 @ 2:08 pm

  3. nino,

    thanks for this… really..


    Comment by Biella — October 15, 2006 @ 2:50 pm

  4. we have read your story about your mother, my mother has the same. the siliva is our main concern and was wondering did they manage to stablize it.


    Comment by sally markham — February 22, 2008 @ 1:00 pm

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