What do you do with your mom when she can’t do anything—anything at all—for herself? This is not, first and foremost, about how you address her needs but about where you put her. No, it is first about who or what facility will take her.
No, it is first about what member of the family will actually sort through the incredibly byzantine and deadening options—or lack of options.
It is at this point that I became unreasonably mad at my Maui brother. In a way I understood the basis of his excuse: It was not a coincidence that he was living in Maui—his twenty years in paradise were in part an exercise of the modern right to distance himself from his family, a point which he was militantly maintaining now. He lived in Maui precisely to be far from all this. It was notable that among the people with whom I shared my tales-of-mother crisis, many, with far-flung ailing parents, identified themselves as the Maui brother. Of all things to escape, this might be the big one. And, too, in my Maui brother’s defense, all responsibility is relative: If he was doing less than I was doing, I was doing by a significant leap less than my sister was doing.
It is among the most reductive facts in this story: Women take care of the old. They can’t shake it because they are left with it. In the end, it is a game of musical chairs. The girl is the one almost invariably caught out.
My sister assembled the list of potential nursing homes, special elder-need facilities, and palliative-care centers in commutable distance. I grudgingly went along to the best after she’d eliminated the worst. Medicare grades each of these institutions on a five-star scale. Four stars were already charnel houses. One star therefore unimaginable. Just about the only five-star facilities in Manhattan are for HIV-positive patients.
Finely tuned into my mother’s profound fear of virtually all strange presences, touches, and noises, and yet her need for constant attention and reassurance, my sister found fault with every place. This might have finally annoyed me, except for the fact that each of these places wanted you to pay prodigiously for its depressing indifference, and, what’s more, many either excluded my mother’s condition or had waiting lists that would, it seemed reasonable to assume, outlast my mother.
Hospice was the best alternative. But while my mother was surely dying—with her doctors gladly willing to certify her in this regard—hospice, we so learned, was not for the certainly dying but the promptly dying.
Curiously, and unhelpfully, it was at this time that one of the neurologists making occasional visits took it upon himself to reevaluate my mother, declaring that her diagnosis was wrong. She did not have Alzheimer’s, as everyone seemed to assume. She had dementia, surely, but it was not going, and would not follow, the pattern of Alzheimer’s. She would not disappear; she would maintain some awareness and consciousness of her surroundings, he said, as though this were good news.
It was Marion, my mother’s aide, a woman of remarkable humor and constancy, who had shown up one day, sent by a random agency—and who has now been with my mother every day for almost eighteen months, not a day missed—who suggested just “bringing her home.” The best Manhattan approximation of “home” when there is no family homestead seemed to be the studio apartment where she is now, a short walk from my sister’s house.
My brother could only see this as a quagmire of cost and responsibility. My sister assured him, as the doctors were assuring us, that six months was a realistic outside framework. My brother did his own Google search. “Yes, yes, they’re right, six months at this stage is what you can expect. But you know what they die from? They die from neglect! Neglect! There’s no neglect here! It’s unnatural!”
I signed the lease.
“Who can believe it’s been a year?” said Marion when I signed the lease for another year a few weeks ago.
My sister comes over every morning. She brings the groceries, plans the menu, and has a daily routine for stretching my mother’s limbs (this in addition to the administration and paying of caregivers, and the collecting of monies from the always recalcitrant John Hancock). I’m here a few times a week (for exactly 30 minutes—no more, no less). Her grandchildren, with an unalloyed combination of devotion and horror, come on a diligent basis. And we have our family events: holiday meals eaten around her bed. Her 84-year-old brother and his wife visit regularly, and so does her 89-year-old cousin and her daughter. She even has one friend left who still calls her every day (all the other friends fell away a long time ago), conducting an extremely one-sided conversation over the speaker phone.