“The Memory House,” by Larissa MacFarquhar. The New Yorker, 10/8/2018.
In my father’s final years, he sunk into dementia to such an extent that he had trouble swallowing, and all of his food had to be brought to the consistency of a thick liquid. His morning coffee and orange juice were thickened; his evening dinner of pork chops was liquefied in a blender.
In his case, dementia was a blessing. My mother had died a few years earlier and he barely realized she was gone, even though he had depended heavily on her for his social contacts. He was living in a Florida perpetual care facility (along with Jean Williamson’s parents), so I could only visit 3 or 4 times a year. I would stay for a week, at most. He kept my phone number by his bedside, and after an evening out, my wife and I would often come home to 20 or more messages from him on my answering machine. He said later that he could hear my voice, but I was not hearing him, so he would try again and again.
My parents started at the facility with their own apartment. When my mother died (suddenly of a stroke) five years before him, my father began sinking into dementia. He once was an avid bridge player, but he gave that up. He once did crossword puzzles, but he gave that up, too.
While still in his apartment, the widow living across the hall stopped me and complained bitterly that my father smelled strongly of urine and should be in assisted care. I explained I lived over a thousand miles away and she should complain to management. His living arrangement was their responsibility. Later, when he was in nursing care (a hospital facility), I heard a wolf-like howl from out of nowhere, and they told me that was the same woman who once had an apartment across the hall from my parents. She often howled like that.
He briefly received assisted care, then moved to nursing care. On one of my visits, he complained that his brain wasn’t working right, but that was only once. As he got worse, he no longer realized his situation. He lived to 93.
My mother often told me the saying there was, “The lucky one goes first.” She was the lucky one, no doubt about it.
Now, about the New Yorker article. It opens with a description of a modern memory-care unit in Chagrin, Ohio, a small town just east of Cleveland. (If you ever find yourself in a memory-care unit, don’t expect to ever leave.)
The large, central room was laid out like a stage set to resemble an old-fashioned neighborhood that the residents were familiar with. There was a center-town fountain, surrounded by scattered tables and chairs. The carpet was mottled green to resemble a lawn. Against the walls were clapboard houses with porches with rocking chairs projecting into the room with a living room, a bedroom, and a bathroom inside. Each porch marked someone’s home. Light came in through high ceiling windows. As night fell, the porch lights and street lights were turned on, and finally, the ceiling sky was switched off. Some of the residents realized they were in a memory-care unit, some did not.
Two long hallways looking like streets led from the central room. Each hallway was lined with similar porches. The illusion did not have to be perfect; just enough to trigger the fantasy.
This example is like many other facilities, some more elaborate, some less so. Many care facilities have added a fake bus stop. The patient attempting to escape will wait at the bus stop, but soon forget why they are there, and can be led back to their rooms.
All of this is part of the wider question of whether the doctors and staff should lie to the patients, who, for instance, asks about their long-dead wife. “We just say she’s at the store, or maybe she’s just taking a walk. It’s a beautiful day outside. That’s all they need to hear.” One care provider said, “I think for the most part it’s kinder to just go with the moment because the chances are within the next few minutes, they’re not going to remember what just occurred anyway, or when they’re crying out for their mother to say, ‘You’re 94 years old! Where do you think your mother is?’ That’s just cruel.”
(My father once asked me if his parents were sill alive. When I told him they were long gone, he simply said, “I thought so.”)
“You’re not actually reinforcing the idea that Fred is alive when you know he died,” said one care-giver. “You are simply not disturbing the idea that Fred is alive that the person with dementia already has.”
The critics are generally from the generation of not long ago when doctors commonly lied to their patients about the severity of their illness. “You’ll feel better in a few days,” when they knew full well the patient was dying of cancer. They thought they were being kind.
Those days are past, but proponents say dementia patients are different, and all care-givers admit to often glossing over reality as the most expedient approach. What does a little white lie matter when the truth would be unnecessarily upsetting?