Alzheimer's disease · Caregiver · Caregiving · Disclosure

The A-word / July 22, 2006

I have never said the “A”-word to my mother. I’ve never told her that she has Alzheimer’s, nor have I referred to it in passing. We have talked about her memory loss–I’m getting better at trying to draw HER out, rather than giving her little pep talks about it–but ever since the day the neurologist, Dr. B., calmly told my mother, sister and me that my mother had probable Alzheimer’s the word has not been spoken in front of her.

When I admitted this to one of my own doctors, his eyes widened. He was shocked. He calmed down a bit when he realized that I wasn’t actually pretending to my mother that nothing was wrong, but he wondered why I didn’t tell her the truth–”A”-word and all–didn’t I think she was entitled to that information?

I asked him how on earth I was to go about telling an 82-year-old widow that it was highly likely she had an irrevocably degenerative brain disease that had no cure? That its progress would be insidious and cruel–allowing her for the first few years to be aware of both the erosion of her past and the utter blankness of her future? Maybe she IS entitled to this knowledge, but what effect will it have on someone who has already struggled with depression and anxiety? At the risk of making a horrible pun–this was a no-brainer for me.

When we got home from Dr. B.’s office eighteen months ago, I, of course, was dizzy with shock. I immediately shifted into a mindset that was not strictly denial–I decided that I was going to take each month as it came with a dose of healthy skepticism. Whatever happened, happened, and I was not going to anticipate it. I now see that I was buffering myself. I remember my mother saying to me at one point that day that she thought she’d heard the doctor say the “A”-word (her term). I don’t remember what I said in response. I hadn’t exactly liked the neurologist–too smooth–and I may have said something to her about these feelings. But I think this was her way of signalling to me that this possibility was something she did not want to explore, and she has never mentioned the disease specifically to me again.

Her geriatrician has managed to navigate the shoals of obligation to his patient and deference to the wishes of her caregivers by not saying the “A”-word, while at the same time being straightforward with my mother about her losses. When she talks about her memory he tells her that she has lost parts of it permanently and must make the most of what she has now. He doesn’t say it that tersely, but that’s the thrust.

Oddly enough, I would now very much like to talk openly about it with her, but I feel that I need a signal from her, and the time for that is fading. In Shenk’s book, he describes two broad phases of AD: the being-aware and the not-being-aware. My mother is still aware that something is wrong, that mental matter is leaking out somewhere, but I’ve noticed lately that she has episodes of not-being-aware. When she looks for “Ma and Pa” and I tell her that she and I are the only ones in the house, she looks at me angrily, as if I’m trying to pull one over on her. “Are we going to play this game every night?” she snapped at me yesterday.

And then I think: Why do I now want to discuss it with her? Am I again trying to buffer myself, now that I can see the hard decisions on the horizon? Do I expect that she’ll then understand what I am going through and take the burden off my shoulders by making her wishes clear? Ironically, I sometimes think that if I’d been honest with her at the outset, she might have been able to tell me back then what she wished for herself, saving me at least some of the anguish I’m going through now. I honestly don’t know that I’ve saved her much anguish–whether or not the “A”-word is used, she has been witness to the growing blurriness of her mind, and there is nothing I can do about that.

In the end, she may have had a few months of ignorance, once the medications began to work and her mind briefly improved. I kept the “A”-spectre hidden during that time by not telling her. I’m not sure this was the ethically correct decision but I’m able to live with it.

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