Grown-Ups and Death

This past trip back to Louisiana was different from all the others. For the first time, I wouldn’t be seeing my Dad, since he died earlier this year.

I haven’t talked much about his death for a number of reasons, the primary one being that it’s still a tangled mess of emotions that I haven’t sorted out and probably never will. It’s not all cut-and-dried, but I don’t imagine that’s too different from anyone else’s experience.

I can compare his death to my Mom’s death in 2001, though. My mother died from Alzheimer’s that year, which was before the US had developed an interest in palliative and hospice care. She literally starved to death in a dark room, alone, where she was kept from bothering everyone else with her screaming. In contrast my Dad died in a pleasant facility (Carpenter House) where a staff of caring, supportive, and understanding professionals made his last days as easy and comfortable as possible. It was a remarkable place, and my sister and I were glad for everything they did.

My Dad had a part in this, in some way. After my Mom’s death, he — a lifelong Catholic — wrote his representatives supporting the right for all people to die with dignity. He and people like him resented the horrific farce that was promulgated in the name of “sanctity of life”.

I think about this because there are some facts that I can’t deny: my mom had Alzheimer’s, her brother had Alzheimer’s, and my Dad’s sister has (any day now, “had”) Alzheimer’s. It’s all over my genes. Every single time a simple fact is delayed from springing to mind by a few seconds, I feel a twinge of panic.

I’ve also thought about it in regards to two related things I’ve recently read online. The first is an article talking about writer Terry Pratchett, who has Alzheimer’s, looking into choosing his own death. The second is Roger Ebert’s review of You Don’t Know Jack, an HBO movie from last year documenting the career of notorious “Doctor Death”, Jack Kevorkian (who recently passed away).

In the articles and related discussions, some points keep being brought up, namely that a lot of Kevorkian’s patients were “not terminal” and “not in pain” and therefore should not have been assisted in their suicides. It’s hard for me to see why this is a problem. My mother was not in physical pain for most of the ten years her mind was decaying. Does this mean she was a happy, healthy, person? Some folks have talked about whether or not the person is “still in there” regarding Alzheimer’s patients; let me assure you that if you spend just five minutes around one, you will hope the person isn’t inside there.

We are adults and we are able to make adult decisions and one of those should be that, when we feel we can’t go on, we have the right to stop. We don’t have to have anything drawn out needlessly because someone else isn’t comfortable with it. We’re not talking about kids breaking up with their first crush or losing a job, we’re talking about people in a situation that isn’t going away deciding whether or not it’s worth it.

I plan to be around for a good long time (you’ve been warned). But I assure you of this: if I am ever diagnosed with the early stages of Alzheimer’s, I can guarantee I will not show the later ones.

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2 Responses to Grown-Ups and Death

  1. richard says:

    Well said. Perfectly healthy people who don’t wish to go on have the ability to stop, even if they’re not legally entitled to exercise it. Resistance to the systems that are set up to determine your life is itself a fundamental right, and indispensible because no system can predict what you will need. Getting sick exposes you to the true nature of the system, and the failure of others to imagine your situation.

    So I see only one solution: listen to the person who has less access to resistance and try to do what they say. Or if they can’t speak, listen to their loved ones. You may do injustice that way, but probably less than you would sticking to any badly designed set of arbitrary rules.

  2. sistawoman says:

    I am so tired of hearing “Getting old… well it’s better than the alternative”. Sometimes it’s not. Watching someone you love and respect deteriorate into a horrific shadow of themselves is far worse than getting old. By the time that mama’s body stopped existing, I hated the fact that she was still alive for the woman that was my mother had died so many years prior and the thing that remained mocked the woman that she was. There is a difference between protecting the “sanctity of life” and the “sanctity of breath”. Life is only worth something if it can be lived. Sitting in a closet while screaming all day, unaware of the year, the day or even the hour is not living. Inability to experience joy, pleasure or any emotion is not living. Not all with Alzheimer’s are trapped in the dark place that mama was. Some are happy and child-like. The mind may be wanting but they feel loved and safe. We should all be so lucky. But for those that are not so fortunate, it is a shame that a beloved pet is treated with more respect for when the pet reaches the point where life is more effort than it is worth, they are allowed to peacefully go to sleep.
    I can only hope for the time when the people and their needs become the focus of those that make laws. As a part of a rapidly aging society and one with a genetic predisposition for dementia, I hope that time is soon.

    Also, a very interesting documentary (and not an easy watch) on the subject is The Suicide Tourist. It is produced by Frontline.