April 29, 2011

USA: The Last Place She Expected to Be

NEW YORK / The New York Times / Health / April 29, 2011


“I’m beginning to feel more and more like I’m in the wrong place,” my mother said.

As was so often the case, she was the first to note this out loud, although my brother Michael and I knew it and were alternately pretending otherwise and making random stabs at solving the problem. In consultation with an elder care lawyer, my brother tried to make sense of New York State Department of Health regulations involving assisted living, “enriched” housing and adult care homes. Which was my mother actually in? We didn’t have a clue.

And why were they prohibiting us from hiring private-duty help for her or from even providing her with a wheelchair so she could get to meals and to the bathroom without falling?  Getty Images

Unbeknownst to us, we had chosen for my mother an assisted living facility licensed to provide extra care in only one way: We could sign a new lease for “enriched” housing, at monthly prices ranging from $150 to $1,150 on top of her current rent. This would buy her up to 10 hours a week of personal care, although she could never receive more than four consecutive hours.
Otherwise she was on her own or one of us had to be with her. Anyone needing more attention than that was expected to move to the on-campus nursing home. That place made me shudder and eventually prompted an epiphany on elder care.

When shopping for an independent living, assisted living or continuing care retirement community, focus on the nursing home that is either affiliated with or part of the facility. If you can’t imagine your mother or father winding up there, look elsewhere. This requires that you imagine the worst-case scenario, which nobody wants to do. But only by doing that can you be sure your parent will be spared moving to a completely new setting every time her condition deteriorates.

“Aging in place” is the mantra of elder care, ideally at home or in one facility that will serve your needs forever. It rarely happens. Things change. In the trade, moves are known to cause “relocation trauma,” physically and emotionally, for the frail elderly person, already sick and scared, and for the adult children, who must orchestrate everything.

As my mother deteriorated in her assisted living facility, I got her three hours a week of personal care. It wasn’t nearly enough. Many nights she couldn’t make it to the dining room on her walker. But getting her the wheelchair she needed would put her on the fast track to the unthinkable nursing home there.

Was there a chair we could borrow on difficult days, I asked? The facility had two, I was told. One had to be kept in the office for emergencies, and the other could be borrowed by signing up for it during regular business hours, a day in advance. So I would have to know by 5 p.m. Tuesday, say, that my mother was going to need the chair to get to dinner on Wednesday. Or maybe Wednesday’s dizzy spell counted as an emergency? But no. The emergency chair had to stay in its place. It all had a “Catch-22” quality.

I didn’t sign up for more hours of help because I was worried about money. The idea of going broke haunted me. At night, when I couldn’t sleep, I calculated when she would run out of money, then calculated when my brother and I would run out of money if we had to pay all the bills.

Consumed by worry, I felt work was the one safe place — but only so long as I wasn’t at my desk, where the phone rang incessantly. My sturdy, independent mother was now in perpetual meltdown. She was petrified, losing control of everything all at once, humiliated, enraged. The mood swings from sweet-and-grateful mom to it’s-all-your-fault mom destabilized me as nothing ever had before. I had reached a point of desperation. I needed help.

I had no right to expect someone to fix in short order a situation that had been deteriorating for months. But one day, in a conference room at a geriatric care management agency, that is essentially what I asked. At the table were one of the owners and a social work supervisor. I told them our story, of choosing an assisted living facility that could neither fill my mother’s needs nor let me hire someone to fill them. I told them I was coming unglued.

The two professionals agreed that the most important task was to find an appropriate facility. First, however, they’d broker a deal for her to get the help she needed in her current situation: they’d instruct her assisted living facility that safety laws, and my mother’s changed status, required 24-hour care and a wheelchair until we could find a suitable new home. Michael and I would go look at a highly regarded nursing home and an assisted living facility that accepted residents with live-in aides and wheelchairs.

They explained the pros and cons, financial and otherwise, of a nursing home versus an assisted living apartment with 24/7 help. They seemed to be leaning toward a nursing home because there, should my mother run out of money, as she likely would, her care would be paid for by Medicaid. In an assisted living facility, someone who can’t pay her own way must leave.

Things moved quickly now, but without that heady, anything-is-possible rush I remembered from the weeks surrounding my mother’s return to New York from Florida. Nine months had chastened all three of us.

I wouldn’t say we were smarter, only that we knew how much we didn’t know. Also, we were well on the way to changing our definition of success. My mother was never again going to have the life she had in Florida. She was never again going to be self-sufficient, independent of her children’s interference, and we were never again, until her death, going to be free of the responsibility for her well-being. Three people who were family more in name than in fact, not estranged but certainly distant from each other’s day-to-day lives, were now working in harness, our goal a safe harbor in which my mother might live out her dwindling days.

Michael and I went to see the Hebrew Home for the Aged, on the banks of the Hudson River in Riverdale, N.Y. We intended to look at a small assisted living building on the main campus, even now clinging to the reluctance of adult children to “put away” their parents. But it was already inadequate to her needs.

Instead we toured the skilled nursing floors, each with 48 residents, two R.N.’s and six certified nurse aides. The admissions director, unbidden, said the ratio of aides to residents was “never enough.” Her honesty was appealing.

Our next stop was another assisted living facility, also in Riverdale, run by a corporate up-and-comer in the field. This was one of their newer properties, less than half full. A pushy sales person offered a discount on a one-bedroom apartment, with room for a live-in aide, $3,295 a month, rather than the list price of $3,650. Warning bells went off. The speil continued, but we weren’t listening.

Our minds were made up. Hebrew Home it would be. This was the most important decision we had made so far, and my brother and I found ourselves utterly in harmony, led to it as we were by my mother’s clear head. Rather than balk at our clumsy efforts to be good children, she had given us permission to do the unthinkable. She would go to a nursing home after all.

© 2011 The New York Times Company