In Love: A Memoir of Love and Loss(18)

In the bedroom, I recognize the hum of normalcy, and although I don’t relax entirely, I do enjoy it. We brush our teeth. We smile at each other. He takes his vitamin B-12 supplement, which I hope is the answer to the question of what the hell is going on, but which I fear is not. (The descriptions of B-12 deficiency sound dire: suicidal wandering, yellow skin, deep dementia. That’s not Brian.) We get out of our nice clothes. We throw the decorative pillows in a pile. I get into bed and Brian hands me the remote that adjusts our clock. He tells me to pick whatever show I want. The hum inside me stops. I hand the silver remote back to him and tell him what it is. He takes it silently. I get up and find the TV remote on the floor. Neither of us says anything. I have no idea if he thinks this is no big deal, which is how he’s acting, or if this is the kind of psychic destruction he’s trying to manage every day. We watch an episode of Brooklyn Nine-Nine and I say, I love Andre Braugher, and Brian says, Me, too.





Thursday, August 15, 2019, New Haven, Connecticut





Finally, we have our appointment, our second, with the neurologist. We get there in plenty of time. The secretary/receptionist nods at us from behind the glass. Two men in matching plaid shirts, one young, one old, are both slumped in the waiting room chairs, heads resting against the wall. The waiting room is so small, we all have to keep our feet tucked under us.



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There are around six million people with Alzheimer’s in the United States. This doesn’t include the people with mild cognitive impairment who might or might not become more demented (statistically, 80 percent of people with MCI do go on to develop Alzheimer’s within seven years, and although reevaluation every six months is recommended to people with MCI, no website can tell you why frequent reevaluation is recommended, as there is no FDA-approved and successful treatment for MCI or for slowing the progression of MCI to Alzheimer’s or, really, for Alzheimer’s itself). The six million also doesn’t include people with TBI (traumatic brain injury), which often leads to some form of dementia, or the people currently suffering from several different forms of dementia, which end just as badly as Alzheimer’s but may progress differently. Almost two-thirds of these six million people are women. Almost two-thirds of the caregivers for those Alzheimer’s patients are also women. More of the patients and more of the caregivers.

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…”