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May 03, 2016
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Activities of daily living

My uncle’s home health aide is there to assist him with “ADL”—activities of daily living. It was a term I was blithely ignorant of before my aunt had a stroke earlier this month. He is in his mid-80s with multiple health problems. She is younger and not the one we were worried about. But the toll of caring for an older spouse—or a younger one who is infirm—is dear. She lost 60 pounds in a year and a half, and she never was a candidate for one of those reality shows about obesity.

Now, she is the one who needs care. She is entering the second week of a three-week maximum stay in an acute stroke rehab facility in Manhattan. What to do next is the question my relatives and I are struggling with now. In the course of our deliberations it has become clear how relevant the question may be for all of us sooner or later, as we need help with the activities of daily living.

Age is only one factor of predicting who will need help, or how soon. Just this weekend, in rehearsal for a play, I was pushed in an improvisation and fell, breaking my arm. I now need help with bathing, cooking, opening jars and typing. I can dress myself as long as there are no zippers involved. I can’t drive (or haven’t tried). Fortunately, I have an able husband in residence and I can still walk Aengus, our dog.

My cousins and I have toured some lovely assisted-living facilities both in Manhattan and New England, which is nearer to them. But I can’t imagine my still-youthful aunt living there, among the aged and infirm, even in her present condition. She is a licensed psychoanalyst with a roster of patients, a gourmet cook who lives in a townhouse and entertains a large family gathering every Christmas. She is used to speaking at conferences and traveling to her beach house in the summer. She is also a bit of a food snob and the fare I have sampled at even the best facility fails the taste test my aunt would apply to it. Potato chips as a garnish, really?

The night of her stroke she and her husband had finished dinner together and were watching television in the family room. Asked to recall the event, my uncle said she “flew through the pass-through and flopped around like a fish on the floor.” A hopeful sign of my aunt’s condition is that she and I both laughed through our tears at the image his uncertain mind had conjured. But he was helpless. Unable to dial 911, he had the presence of mind to open the front door until a neighbor appeared.

A dispassionate observer would say he needs to be in a nursing home until his wife is able to care for him again. And what about her? We’re not sure what kind of progress the next few weeks will bring, but is moving out of the home you have curated and enjoyed for 35 years the healing thing to do? We are leaning toward trying to find a way for them to stay at home with live-in help, but without her income, even long-term care insurance won’t cover their expenses for long.

My children see this as a cautionary tale. They ask, “Is there a plan for you, Mom and Dad?” I tell them there is, with my fingers slyly crossed, but it is hard enough to plan activities of daily living, let alone the hazards of aging.