NYT Article – What I Wish I’d Done Differently

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July 7, 2008, 10:37 am
What I Wish I’d Done Differently
By Jane Gross

Looking back on the last few years of my mother’s life, with 20/20 hindsight and the belated knowledge that came from four years of reporting about aging for The New York Times, my single biggest mistake was not finding a doctor with expertise in geriatrics to quarterback her care and attend to the quality of her life, not merely its length.
Given the crisis in supply and demand “” too many old people and too few geriatricians “” I may not have succeeded. But if I had, many of our crises might have been avoided. Those include unnecessary trips to the emergency room that left her in worse shape than she had been beforehand. It also includes surgery to remove a benign tumor from the outside of her spinal cord after it had already done the worst of its damage and with no regard for her advanced age.
It was after that surgery that she took a precipitous nosedive, moving to a nursing home and suffering a series of T.I.A.’s, or very small strokes, which eventually left her paralyzed, incontinent, unable to speak and barely able to swallow. Later, both Dr. Roseanne Leipzig at Mount Sinai Medical Center in New York City and Dr. Dennis McCullough at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., told me that no doctor familiar with the physiology and psychology of the elderly would have operated on her without at least a discussion of the special risks to the aged.
My second biggest mistake was accepting the conventional wisdom that nursing homes are terrible places, to be avoided under any and all circumstances, and that assisted-living communities, with their pleasant apartments and other amenities, could accommodate my mother’s needs until the end of her life. Assisted-living facilities do offer an ever more expensive list of add-on services, including private duty, around-the-clock assistance. But too often they cannot meet the needs of deteriorating patients, forcing a series of relocations, each more destabilizing than the last.
State licensing regulations are wildly inconsistent in terms of how much additional help must be available in an assisted-living facility, even for those willing and able to pay for it. And any reputable facility will admit, sometimes only under stiff questioning of the director rather than the sales staff, that without an on-site skilled nursing facility or a dementia unit, many residents will wind up too ill, too frail or too cognitively impaired to live out their lives there.
If I had it to do all over again, I would plan for the worst and seek out a not-for-profit nursing home that met my standards. Many have assisted-living apartments on site, less attractive than those at for-profit chains like Sunrise and Atria, but offering a smoother transition if and when skilled nursing becomes essential.
My third mistake was being gleeful when my mother, then in her mid-70s, chose to sell her house on Long Island, flee the snow and the need to drive, and move to a retirement complex in Florida. Now when she didn’t answer the phone, I assumed, there would be someone to check up on her. She would have grab bars in the shower and a pull cord for emergencies. I wouldn’t be so frightened all the time.
What never occurred to me is that once my mother no longer had a home, we lost the option of setting her up with home care. Eventually too incapacitated to live out her days in assisted living and unwilling to move in with either of her children, a nursing home was her only choice “” a happy one, as it turned out, but not in the early going, for any of us.
My fourth mistake was not understanding the limits of a long-term care insurance policy that had cost us about $7,000 a year because of my mother’s advanced age when we purchased it. It would have paid for retrofitting her own home, or even mine. It would have paid for 24/7 home health attendants. But it was virtually useless in an assisted-living apartment, and once my mother was in a nursing home, the policy benefit wasn’t ours to spend.
As long as my mother still had assets and could pay for her $14,000 a month room, the insurance benefit went to the nursing home and reduced her bill accordingly. When she ran out of money, in fairly short order, she was eligible for Medicaid, not because she was old but because she was impoverished. Then the insurance benefit went to the federal government.
All of these mistakes would have mattered less if the trajectory of my mother’s decline had been different. But that trajectory, alas, is unknown and unknowable but for its certain ending. So every decision we made “” residential, medical, financial “” was a crapshoot that changed the landscape for the next decision, usually by limiting options I didn’t even realize we had. There’s no way around this uncertainty, no way of knowing what’s going to happen next so you can plan accordingly. But physicians, social workers, case managers, lawyers and financial advisers with expertise in old age are the best guides. And haste, often the result of panic, is the enemy.

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