For years, and especially as he entered his nineties, my father kept begging me not to “dump” him into a nursing home. He had seen too many of his cronies abandoned in this way by family members; his visits with these friends left him feeling depressed and hopeless for days. I assured Dad that I’d never put him in a facility.
It was an easy promise to make. I didn’t want him in a One Flew Over the Cuckoo’s Nest setting with a Nurse Ratched supervising his care. 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 a facility, with all of its unknowns, to replace his familiar apartment, which I’d been sharing with him for more than a decade.
But in spring of last year, six weeks after Dad turned ninety-eight, I broke my promise.
I felt that I had no choice. He was doing bizarre things — urinating on my bedroom carpet, 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 ninety minutes to complain about imaginary problems or search for monsters he “knew” were lurking in his closet or under his bed; his behavior left me tired and drained.
Dad’s nursing home turned out not to be as horrible as 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. (In fact, 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, moans 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. 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 thirty-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 I was back home — in the same apartment that Dad and Mom had shared for decades until she died — I couldn’t get comfortable. I’d turn on my computer to answer emails, 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 of his bedroom, questioning my decision: I’m sure that I had many meltdown moments as a child, yet Dad never sent me away. Dad had been there my entire life — giving me emotional support when I was the only high-school senior not invited to the prom, giving me financial support 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, have I sent him away?
These questions tormented me. So did the answers: Because caregiving is hard. Because, at sixty-seven, 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 back home. It was money, pure and simple.
After three months, the facility’s $250 daily rate became too much for Dad’s finances. Like many middle-class people, he had saved too much money to qualify for Medicaid, but not enough to pay for the facility. Medicaid would have kicked in once Dad depleted his life savings, but he deeply wanted that money to be his financial legacy to me — to help ease the burden of my own aging. He also had no long-term care insurance. The responsibility to pay would rest first with him, then with me. I faced a harsh choice: to deplete both of our nest eggs to pay for the facility, or to bring him back home.
I feared that keeping him in the facility would eventually land me in a homeless shelter; I feared that bringing him home would land me in a psychiatric unit. I chose the latter because, despite its psychological hazards, I believed that Dad deserved to spend his remaining time in his own home.
The nursing facility staff prepared me for Dad’s homecoming. 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.
Also, three months of daily facility visits had 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 once successful doctor who had a feeding tube and could never again taste real food.
Luckily, Dad is neither of those. He’s still my father — except when, as frequently happens, he becomes a stranger. At those moments, I wait in silence for him to return, or I gently prod his memory with stories of the past; then Dad comes back to me.
I feel more comfortable now with the stresses and strains of living with him. I’ve resolved to take things one day — one minute — at a time, and to cherish every second we have together. It’s working so far, and I no longer worry about its mental or emotional toll on me.
Now, no matter what challenges we’ve faced during the day, Dad and I choose to end it with a few minutes together.
I lie next to him in his hospital bed, and for about ten minutes we talk about the past or just rest in congenial silence. It means a lot to me to be able to have this time together — to let the love we’ve always shared wash over us and remind us that we’re still a father/daughter team. When I give Dad a final hug and kiss before leaving, I feel refreshed, knowing that bringing him home was the right decision and that I have enough love for him to make it through however many days we’ll be fortunate enough to share.
On November 1 of last year, not long after I’d written this essay, my beloved father died at home, in his own bedroom, with me by his side.
Ronna Edelstein is a writer. This article was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission.
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