AARP The Magazine

How Dementia Changes Families

When my mom developed dementia, my dad tried to deny it and I tried to fix it. We both failed

Epstein coordinated a series of family meetings. I had been hoping we could guide my dad to see the situation more clearly, get more involved in Mom's care. That was too simplistic an assumption, according to Karen Krefman, a licensed marriage and family therapist at the Family Institute at Northwestern University. "The idea of children 'guiding' implies a polite conversation, which the parent immediately accepts," Krefman tells me. "But adult children regress; they want to scream at their parents. Boundaries are crossed, rules change, roles change. You have to engage the healthy parent and work with him or her to accept what no one wants to accept."

Of course this was true. All of it. My own screaming sent my father out of the third family meeting, and he wouldn't come back. Yes, I was frustrated with his obstinance — his refusal to see the truth that we kids saw — but maybe what really infuriated me was that he couldn't just fix it. The way Mommy always fixed it. That seemed to be my job now, fixer in chief. Which meant what? Making doctor's appointments? Interviewing home health aides? What was I actually fixing?

In the family meetings we managed to have, Epstein logically divvied up caretaking responsibilities among my siblings and me. But if my parents had gone AWOL on their roles, my siblings' childhood reflexes kicked right in: Alex will do it. I was the oldest and, with Mom working all the time, I had always been her de facto deputy. Why would anything change now?

Also, at that point, all my siblings had infants or toddlers; one lived far away, and another was coping with illness of her own. I lived nearby, had two grown stepchildren and worked, much of the time, from home. Since that phrase seemed to evoke images of bonbons and Jacuzzis, I resented both the presumption that I was eternally available and the fact that I was saddled with the responsibility. At first. But once I delegated a doctor's appointment or two and realized that most of my questions had gone unasked by the well-meaning sibling in charge, I embraced my own type A compulsiveness, quit complaining and did it myself. Unsurprisingly, no one has minded.

So for the past seven years I have run my parents' home — paid their bills and their taxes, made sure their worn-out underwear gets replaced. After my father's initial anger, he settled down, for the most part, retreating into the denial where he was most comfortable.

"Your mother's doing very well," he would tell me, regularly. "Some days, you'd never know there was anything wrong."

As for me, I stopped arguing. I stopped expecting him to step up and fix it and stopped expecting myself to be infallible, all-knowing. It turned out that the fancy doctors, the expensive pills, the endless tests, my iron will, my reams of notes, my research, were all for naught. Dementia won. The only power I had left was to surround my mother with acceptance and kindness. "Gentle!" my sister used to caution her small sons when they would grab the cat's tail. Gentle, in the end, is all. Gentle is what my mother deserves.

Last fall my father's neurologist told me Dad, by then 88, was showing signs of dementia himself. I wasn't that surprised. He stopped working as a financial public relations consultant a few years ago and spends most of his time with my mom and her caregivers. "All adults need social and intellectual stimulation, and he's not getting it," Gwyther explains. "That could affect his cognitive performance."

His behavior hasn't changed much, so far at least. He, too, no longer seems able to read. Instead of admitting it, like my mom did, he says there's nothing good left to read in the library. He's read it all.

If he had told me that even a few years ago, I would have argued, taken him to a different library, bought him gift cards to Barnes & Noble. Now I hear what he's saying. I don't pretend that I have answers or alternatives. That I can fix it.

So neither one of them reads. He and my mom take walks. They sit on benches side by side and feel the sun on their faces. They go to sleep at night and wake up in the morning. Some days, you'd never know anything was wrong.

Alex Witchel is a staff writer for the New York Times Magazine. Her book All Gone: A Memoir of My Mother's Dementia. With Refreshments, was published last fall.

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