For years, and especially as he entered his 90s, my father had begged me not to “dump” him into a nursing home. He had seen that happen to too many of his cronies, and his visits with them left him feeling depressed for days. I assured Dad I’d never put him in a facility.
It was an easy promise to make. I envisaged him in a “One Flew Over the Cuckoo’s Nest” setting, supervised by a heartless Nurse Ratched, and I didn’t want that for him, either. I didn’t want him waking up at night disoriented and lonely. Because he was inching closer to death, the greatest unknown, I didn’t want an institution, with all its unknowns, replacing his familiar apartment, which I’d shared with him for more than a decade.
But in May last year, six weeks after Dad turned 98, I broke my promise.
I felt I had no choice. He was doing bizarre things, including urinating on my bedroom carpet and trying to get on the exercise bike in the living room “to take a ride down the street.” And he was saying bizarre things — blaming his hypoglycemia on no longer being able to drive and his panic attacks on the death of “Uncle Joe” (he has no Uncle Joe). At night he’d get up every 90 minutes or so to search for monsters he “knew” were lurking. His behavior left me tired and drained.
Dad’s nursing home turned out to be less horrible than I had imagined. In many ways, it was a pleasant place. Unlike some facilities, it didn’t reek of urine. The carpet was clean. The aides referred to the residents not as “the Alzheimer’s woman in 210” or the “Parkinson’s man in 304” but by their names — in my dad’s case, Mr. Mort. (One one aide lovingly called him “Morton Salt.”)
Still, it wasn’t home. Alarms rang every time Dad twisted in bed or shifted in his wheelchair. He had to wait for someone to take him to the bathroom. Although the food was good, the dining hall echoed with coughs, sneezes and groans. Many of the residents had hopeless eyes and unsmiling mouths.
I spent each day with Dad, from 8:30 a.m. to 6:30 p.m., canceling all my summer teaching and social commitments. The worst moment of the day was when I left. Our goodbyes were heartbreaking — endless repetitions of “I love you,” countless hugs and kisses. Then I’d make the 30-minute drive home to Pittsburgh from the small community of Oakmont, crying all the way. My adult children (one in Manhattan, the other in Vancouver) feared for my safety.
Once home, in the same apartment Dad and Mom had shared for decades until she died, I couldn’t get comfortable. I’d turn on my computer, but the screensaver was a photo of Dad; each time I saw it, my heart ached anew. I couldn’t sit in the most comfortable living-room chair, because it had been Dad’s.
I’d stand outside his bedroom, questioning my decision: I’m sure I had many meltdown moments as a child, yet Dad never sent me away. He had been there my entire life — giving me emotional support when I was the only high-school senior not invited to the prom, providing financial help when my ex-husband reneged on child support, driving 300 miles to come cook, clean and care for his grandchildren when I was ill.
He never abandoned me. Why, then, I tormented myself, have I abandoned him?
The answers were hardly comforting: Because caregiving is hard. Because at 67, I don’t have the energy to pull all-nighters and still function the next day. Because I’ve never had a lot of patience.
Despite my doubts, though, it wasn’t a change of heart that forced me to bring Dad home. It was money, pure and simple.
After three months, it was becoming apparent that the facility’s $250 daily rate was not sustainable. Like many middle-class people, Dad had saved too much money to qualify for Medicaid but not enough to pay for a good nursing home for any length of time. Medicaid would have kicked in once Dad depleted his life savings and liquidated his assets — perhaps including his home, which we owned jointly — but he deeply wanted to preserve my inheritance to help ease the burden of my own aging. He also had no long-term care insurance. I faced a harsh choice: Empty both of our nest eggs to pay for the facility or bring him home.
I feared that keeping him in the facility would eventually land me in a homeless shelter. I feared that caring for him myself would land me in a psychiatric unit. I chose to risk the latter — heartened by the thought that Dad would, after all, get to spend his remaining time in his own home.
The nursing-facility staff prepared me for his homecoming in early August. They taught me practical skills — a better way to lift him from his wheelchair, how finely to cut his food in order to keep him from choking, the trick to putting his pressure socks on him without ripping them. These tips made our life together much easier.
Three months of daily facility visits had also shifted my perspective. I realized that, but for fortune, Dad might have been like some of the other residents: the former mechanical engineer who had, due to Alzheimer’s, spent years sitting unresponsively in a wheelchair, the former doctor who had a feeding tube and could never again taste real food.
Luckily, Dad was mostly his familiar self, especially during his first two months at home. He and I talked, watched television, read and ate dinner together. I pushed him in his wheelchair through the neighborhood to restaurants, the park and the university bookstore he had always enjoyed. And no matter what the day’s challenges had been, we ended each one with a few minutes together. I cuddled next to him in his hospital bed, and for about 10 minutes we talked about the past or just rested in congenial silence, letting the love we had always shared wash over us and remind us that we were still a father/daughter team. When I gave Dad a final hug and kiss before going to my room, I felt refreshed, knowing that bringing him home was the right decision.
I created a routine — a caregiver came when I was at work in the mornings, and at-home hospice workers visited in the afternoon — that helped alleviate the emotional and physical stress of living with Dad. I resolved to take things one day — one minute — at a time and to try to remember every moment.
Then, during the last week of October, Dad became a stranger, babbling incoherently and getting frustrated when I couldn’t understand him. He refused to drink his morning coffee — more cream than coffee — or eat his favorite chocolate ice cream. He often closed his eyes, as if he could no longer handle seeing me, his daughter, feeding him, showering him and cleaning him as if he were an infant. Other times, he stared at me, as if he knew death waited for him and he wanted to have the memory of my face to take with him. Sometimes I cried as I witnessed his decline; other times I waited in silence for him to return, or I gently prodded his memory with stories of the past. But each time he rallied, I knew it would be short-lived.
Early on Nov. 1, a Saturday, I awoke to a new sound on the monitor I kept in my room and Dad’s. The rattling noise frightened me because it was the same sound I had heard from my beloved grandmother and mother before they died. Only after I went in and lay down next to Dad did his breathing return to normal. As I held him, I whispered to him that I loved him, that he should not be afraid and that it was okay to let go.
Dad died peacefully at 2:30 a.m., in his own bedroom, with me by his side.
From the online magazine Pulse, voices from the heart of medicine, which can be read at pulsevoices.org. Edelstein is a part-time English Department faculty member at the University of Pittsburgh.