On June 7, 2012, the New York Times published an article (for inclusion in the Sunday, June 10 Sunday Magazine) entitled How Do You Live Knowing You Might Have an Alzheimer’s Gene? (the article itself is quite good)
I was taken aback by the title. I know that the Sunday Magazine has a distinctly different tone from most of the Times‘ publications, but this just felt so…wrong. It sounded sarcastic and hateful, as though it were spewed from a particularly spoiled teenager’s mouth. “Ugh, how do you live, driving that car?”
Let me state that I do not want to marginalize anyone’s experience with Alzheimer’s Disease or other forms of dementia; I know that there is a huge range and that many people have seen awful, heart-wrenching things as a result of these illnesses.
But I also know of people who’ve had rather positive experiences: the angry and critical father who still recognizes his family but now enjoys spending time with them and actually listens to them; the woman who knows that she has moderate dementia but doesn’t mind it. She told me it was nice not having to worry about so many things. These may be exceptions and not the norm, but they exist.
So, too, do people who’ve seen a mix of positive and negative consequences of dementia. This group is the most common, at least from what I’ve seen. Certainly they wouldn’t wish dementia upon themselves or others, but the experience as a whole is more different than it is specifically positive or negative.
My point is, the idea of “How do you live, knowing you’re going to get Alzheimer’s at some point?” may be an interesting question, but it also reinforces the widespread belief that dementia brings nothing but sadness and pain. And that’s simply not the fact of it.
Within the article, I found this bit to be particularly interesting [bold added by me]
Before they could begin testing drugs on people with an Alzheimer’s gene, though, the researchers had to solve a delicate problem. DIAN participants are aware that they have a fifty-fifty chance of possessing an Alzheimer’s gene, and they know they can be tested and find out if they inherited it — but almost no one wants to know.
Embedded in this piece is the story is Gary Reiswig, a man who spent much of his life believing that he had “the gene,” an Alzheimer’s gene that was in his family. Two of his siblings had it, as did many other relatives. And everyone with the gene developed Alzheimer’s Disease.
Gary was about to turn 40 in 1979 and was working as a city planner in Pittsburgh. He knew he could not continue in that job if he had Alzheimer’s, so one day he said to Rita, “Let’s get ourselves in a position where if this disease hits me, I can be helpful.”
He found what he was hoping for when he saw an advertisement for an inn for sale in East Hampton, N.Y. He could be an innkeeper, Gary thought, transitioning to simple maintenance work if his memory began to fail. So he quit his job, and he and Rita bought the inn and moved to Long Island in June 1979. “I cast myself loose from dependence on bosses in case I began to lose my mental capacities,” Gary told me.
Gary’s story answers the question that titles this piece. One can live with Alzheimer’s Disease or other forms of dementia. You may have to make certain changes, and there will become a point at which you will likely be unable to live on your own. But between now and then are many, many intermediate steps.
You don’t stop living your life just because you know an illness will befall you in the future. You prepare and you enjoy the moments that you have along the way.
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