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In Love: A Memoir of Love and Loss(14)

Author:Amy Bloom

Women in their sixties are twice as likely to develop Alzheimer’s as they are to develop breast cancer. There are a lot of theories about why more women than men get dementia, but only theories: Women live longer, so there are more ladies in their eighties still extant to get age-related dementia; the man who’s living into his eighties didn’t die of a heart attack in his sixties and seventies and is now a sturdier person compared to the women his age, who are often depressed and not regular exercisers. In 2005, there was a study of women’s responses to estrogen and progesterone over four years. And in 2014, researchers conducted hormone-therapy trials on women in rural Utah, to see if women’s brains, regardless of their health, wealth, and educational status, would respond to hormone therapy. It turns out, hormone therapy does a lot of good for a lot of women. And it may be that hormone therapy makes women less likely to develop Alzheimer’s. “Lessening the likelihood of developing the disease” is a common phrase in the Alzheimer’s universe, and it is used about getting enough sleep, eating blueberries, doing crossword puzzles, and a lot of things that are good for all of us, and no one, not one medical website, states that these good things actually prevent anyone—anyone—from getting Alzheimer’s.

I don’t have the scientific training to assess these theories. There are no comparable theories about why women make up two-thirds of the unpaid dementia caregivers, because no theories are needed. Scientists are not even interested enough to come up with theories about this, and I don’t blame them. Who doesn’t know? Sisters, daughters, wives. Of course they’re going to take care of someone with dementia. Even the helpful websites for families and caregivers seem (gently) skewed toward female caregivers.

This below (from a dementia website) addresses how to get someone with memory issues to talk about it with his or her doctor.

HERE ARE SOME IDEAS TO CONSIDER WHEN TALKING TO SOMEONE ABOUT YOUR WORRIES.

Broach the topic gently. It may help to remind them that memory issues don’t always point toward dementia.

Be kind and supportive during the conversation. Listen to their reasons and any fears they raise.

Let them know that you’re worried about them. Give examples of issues: e.g., missing appointments, misplacing items, forgetting names.

Break down the larger issue into smaller ones. Pick one to focus on: e.g., “I’ve noticed you’ve been forgetting names of friends. Maybe the primary physician will be able to help.”

Keep a diary of events as proof. This will help you show someone you’re worried about that you have “evidence” for your worries. The diary will also support you both if you see a doctor, as they may want to see a record of issues.

Turn the focus toward getting support for their friends and family: e.g., “If you visit the GP, we might be able to get extra help that would give me a break…”

I don’t disagree with any of this, above or below.

Let them know that you’re worried about them. Give examples of issues: e.g. missing appointments, misplacing items, forgetting names.

Break down the larger issue into smaller ones. Pick one to focus on: e.g., “I’ve noticed you’ve been forgetting names of friends. Maybe the primary physician will be able to help.”

I can see a wife approaching her more-than-forgetful husband from one angle (soft concern: “Darling, I thought you had book club tonight. Why didn’t you go?”) to another (provoking guilt: “I had a flat tire and I couldn’t reach you. You didn’t have your phone with you”) and then another (prosecutorial: “I’ve asked you six times to take out the garbage and you haven’t”)。 Since the problem keeps shifting, the approach should, too, but one is always a little behind. How do you assess the meaningful difference between can’t, won’t, and don’t remember being asked? I write I can see a wife because I am that wife. I spent three years trying to figure out who my husband had become and how it was that whenever he was returned to me, from time to beautiful, relieving time, neither one of us could get him to stay.

Be kind and supportive during the conversation. Listen to their reasons and any fears they raise.

I’m not sure how any husband or wife does it, responsively and genuinely listening to the arguments and fears, a mix of reasonable and not, and staying at all times, as instructed, gentle, kind, and supportive. In the couple of years before Brian’s diagnosis, our fights changed, and one of the changes was that he would complain not just about my being stubborn (yes), or bossy (Jesus, yes), or a pain in the ass about precise language (no lie), or fussy about clutter (suddenly), but for the first time in all our years, he complained about my tone of voice: Do not speak to me in that tone of voice, he’d say. I’m not a child. I’m not your patient.

I don’t doubt that I used a soothing, neutral, “therapeutic” voice, as therapy is usually performed on TV. I’d become wary and worried about his mood swings, about the surprising responses and misunderstood signals. I found myself saying, often, “I don’t understand what you’re saying.” Which might have been a tactic once upon a time (I do feel it beats saying, What the hell are you talking about?) but now that was exactly what I meant. He would describe a problem or a situation at the beginning of the sentence and wind up with a grand conclusion or crooked metaphor at the end. When I said that I didn’t understand, he’d repeat it. When I tried to interpret the metaphor (“Maybe you mean…”), he looked disappointed and frustrated and said, “We’re not on the same page,” which was true and terrible. If I asked again, he sometimes said that I was bullying him, which made me cry on the spot. I tried to understand the new, stubborn resistance to things that he had always not only enjoyed but pursued. Every Monday, he’d say he was tired of going to the gym, or the book club, or stained-glass lesson, and after the diagnosis, I just agreed, and he kept up with the gym anyway (working out with his trainer, keeping himself in shape because every Alzheimer’s website says: sleep, exercise, blueberries)。 He went every week to the stained-glass studio (a last joy, and after the summer, he knew it was), and I had nothing to say about the book club. He was probably right about my tone, but I couldn’t find a better one.

Keep a diary of events as proof. This will help you show someone you’re worried about that you have “evidence” for your worries. The diary will also support you both if you see a doctor, as they may want to see a record of issues.

I don’t know how any spouse or child produces the “diary of events as proof” one afternoon and does not find themselves in a very difficult situation. (I can hear myself, if I was the patient: “You wrote all this shit down? Why didn’t you just tell me?”) Further on, the website suggests that if your spouse is not having it, you call the doctor yourself and share your concerns, without violating HIPAA (and the doctor is not likely to share your partner’s medical information with you in that call, but you don’t need them to)。 Then, when you have set up the doctor’s appointment, using some not-quite-bogus concern—fatigue, hearing loss, prediabetes, arthritis flare-up—and gotten your spouse to agree, you lug in the diary and hope to God your doctor is good at this. If they are, most likely your doctor will send you and your spouse to a neurologist for some tests, something like the clock-drawing or the mini-mental status exam.

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