I thought I could care for my dad after his Alzheimer’s diagnosis. Like many caregivers, I was quickly overwhelmed
It was a nice dream. My boyfriend was spooning me, nuzzling my neck. His hand crept up under the covers, reaching under my pajama top to cup my breast. Until, abruptly, I realized: This wasn’t my boyfriend, it was my father.
“Dad!” I yelled, leaping out of the bed. “Man, I’m going to need so much therapy.”
My father only looked at me, puzzled. It wasn’t his fault. My mother had died the month before and his Alzheimer’s-addled brain had him convinced that I was her. She’d only made him sleep alone when they were fighting, so he didn’t understand why I insisted on sleeping in separate rooms. To him, it meant he was in the doghouse for some unfathomable reason.
“I’m sorry,” he said, his eyes filling with tears.
I’d let him sleep with me this once because he otherwise had refused to lie down. He’d hardly slept in the month since her death. I was worried he’d collapse from exhaustion. But, apparently, exhaustion hadn’t been on his mind this night.
Exhaustion was certainly on my mind. My father was what they called a wanderer. I lived in terror that he’d get out of the house and walk into traffic. I felt like a new parent of a very large adult toddler; I had to watch him constantly. I wanted nothing more than to keep him with me but I was rapidly realizing that I couldn’t handle him. I’d go shopping and come home to a house full of gas — Dad had tried to cook but was used to an electric stove. The week before he walked my dog, as he had for years, and turned an around the block spin into a multi-hour silver alert ordeal. Fire and police finally found them both dehydrated four miles away.
I’d resisted for years my mother’s attempts to put my father in a home. I was convinced he was better off at home with us. Old folks’ homes were, in my mind, where people went to die. Despite these reservations, I decided it was time to start visiting some communities.
I researched the best places in Washington, D.C., and decided if I was going to have an awful time doing it, I would limit the pain to one day. So I stacked 13 visits on top of one another, packed dad and my dog into my car and off we went.
There aren’t words to describe how terrible that day was. It started with dad refusing to get out of the car at the first home. When he finally did, he just shook his head the whole time, as if denying what his eyes were telling him would make it all go away.
By the 13th home, I was a mess. The staff took pity on me and took my dad and the dog for a walk without me as I sobbed my heart out.
It wasn’t that the places were that bad. Some of them were beautiful. Manicured gardens, trips to the Smithsonian and spring group vacations to Europe. Lectures by Pulitzer Prize winners. Heck, I wanted to live in some of those places.
But others were dreadful. Especially the “memory units” — a nice name for the locked sections that house wanderers like my dad. Or, as he called it, jail. Most of these units featured drooling people parked in front of blaring televisions. Placing my father in almost any of these environments seemed cruel.
We went home and ordered pizza for dinner. Over a glass of wine, I asked my dad which he’d liked the best, not really expecting a cogent answer from him.
“The second to last,” he said.
“Really? That was my favorite as well.”
He nodded his head grimly. “If you have to do it, the second to last is best.”
That moment was such a gift to me — he was rarely as clear as that over the five years he lived after that. He’d granted me his permission to put him in a home.
Of course, he didn’t remember that two days later, when my sweet wouldn’t-hurt-a-fly father slapped me across the face and screamed that I was imprisoning him as orderlies dragged him away.
Despite the last-minute upheaval, I was lucky. My father’s United Nations pension enabled me to secure great care for him. If I hadn’t had that, I would have had to quit my job to care for him myself, a stark choice an increasing number of Americans are forced to make. There are 11 million people living with dementia — 5.4 million of them with Alzheimer’s — in the U.S. today, a number that will more than triple by 2030 as the Baby Boomer generation ages. Given recent drug-trial failures, we aren’t likely to see a cure in time to help that generation.
Of the top 10 diseases afflicting Americans today, nine are declining. Only one is spiking: dementia. Dementia alone will break the backs of Medicare and Medicaid — it’s projected to account for more than 70 percent of all costs by 2028.
Homes don’t have to be like the sadder places I visited, residents acting like drooling zombies parked in front of televisions. As the need for care spikes, America needs to find non-pharmacological ways to improve the lives of those living with Alzheimer’s and dementia, and the jobs of those caring for them. Currently, more than 95 percent of research goes into drugs. No attention is being paid to care. America is short 1.3 million caregivers and will be short nearly 2 million by 2020. Residential facilities experience on average a 55 percent annual staff turnover, which leads to disjointed care. We need more money devoted to looking for better caregiving solutions for the millions of lives those drugs will likely come too late to save.
I created MemoryWell, a national network of more than 350 journalists writing the life stories of those living with Alzheimer’s and dementia, because I felt like I had to reinvent the wheel to improve his care and I hoped to save people the same arduous path. But there are too few startups and solutions like MemoryWell out there. More needs to be done.
As originally published in Salon.com.