By Sara Davidson, Newsweek, 2008
My mother, Alice, had always been strong-willed, opinionated and demanding, a fiery real estate agent who was a life master in bridge and a maven of musical theater. She’d told my sister, Terry, and me never to put her in a care facility. But at 93, she had advancing dementia and was living in L.A., 1200 miles from my home in Colorado and twice that distance from Terry’s in Hawaii. For years we’d put off moving her, fearing she would yell and berate us for disobeying her wishes. What I hadn’t reckoned on was the radical personality change that accompanied her dementia–a condition, I learned later, known as “pleasantly demented.”
It had not been pleasant, though, when Alice, in her late 80s, started forgetting the conversation she’d just had or the movie she’d just watched. When my son graduated from U.C. San Diego, I drove Alice there and our family had dinner by the ocean. “Grandma,” my son asked, “do you know where you are?”
“Yes,” she said, pausing to think. “I’m in Italy.”
By 91, Alice needed a caregiver to make sure she didn’t leave a pot on the stove and burn down her condo. She knew who we were and insisted she could still drive, but Terry and I were worried she might hurt herself and others. I told the caregiver, a loving woman from El Salvador, to remove the car keys from Alice’s purse, but when she found out, Alice called me in a rage. “How dare you make decisions for me! I’m over 21. You have no right to stop me from driving!” She slammed down the phone and I stood for five minutes, taking deep breaths. Then I called her back. “Sara,” she said. “How nice to hear from you.”
She’d forgotten she was angry at me.
Her need for care rose dramatically in the next two years, and I watched with dread, not only for her but because this could be me in 20 years or so. It seemed an awful finale. Last spring, Terry and I flew to L.A. to assess the situation. When we took Alice out to eat and brought her home, she asked, “Whose house is this?” So, we thought, maybe she wouldn’t notice if we moved her?
Most surprising, she was not troubled by her inability to remember anything outside the moment. Terry had heard about a new drug being tested with Alzheimer’s patients that was reputed to restore their memory. We asked Alice if she wanted to participate in the trial, but she shook her head.
Why? I asked. “If you could take a pill that would let you remember everything, would you want to do that?’’
“No. I’m fine the way I am,” she said. “What do you want me to remember?”
“Well, your grand-daughter just got married, you walked down the aisle and danced. Wouldn’t you like to remember those happy occasions?” She thought a moment. “There are a lot of unpleasant things too.” She knocked wood—the table. “I’m fine the way I am.”
Terry started looking for a care center near her home in Hawaii, and found one where Alice could have company and constant activities: chair hula, gardening, and visits from “furry friends.” Would Alice accept such a place? We were told there was a 2-year waiting list, but a few days later, they called and said there was an opening. We took it.
Then Terry was wracked with buyer’s remorse. Had she made the right decision? I felt remorse of a different sort: I’d harbored a lifelong resentment of my mother for always judging me and finding me wanting. Now, I focused on what she’d given me: a love of story telling, curiosity and courage. At a moment when she was alert, I thanked her and apologized for not appreciating those gifts.
On the morning of the flight, she did not protest. Landing in Hawaii, she was driven straight to the care home and sat down to eat with the other residents. Years ago, I used to call her the “send-back queen,” because in restaurants she would send back every dish if it wasn’t prepared exactly as she’d ordered. At the new home, she ate an overcooked hamburger in a dry bun with no complaint. Then she joined the group in singing and went to bed with a smile.
What had caused this reversal of personality? Did dementia bring her serenity and the ability to live in the moment—a state I’ve spent many hours in meditation trying to attain? It would seem that we need memory in order to hold a grudge, worry or be angry. To obsess about a problem or compare the present unfavorably with the past, we need to remember it. Yet many people with Alzheimer’s do become angry, paranoid or agitated. Robert Green, M.D., who directs the Alzheimer’s Disease Center at Boston University School of Medicine, said he sees patients “get more cantankerous and disagreeable. Lots of researchers are looking at these negative behaviors,” he said. “But I can’t recall a paper about people who get more blissful.”
It was a geriatric psychologist, Mitchell Slutzky, PhD, who told me about the sub-set of “pleasantly demented.” Most doctors I interviewed hadn’t heard the term, but when I put out the word, I received a flood of emails from friends and bloggers, saying they had relatives who were pleasantly demented. On the Alzheimer’s Association website, one woman wrote, “Half the clients in adult day care are pleasantly demented.”
Shelley Hoon of Boston said her mother’s personality changed drastically with Alzheimer’s. “I used to call her `The General,’” Hoon says. “She was hard-nosed, never laughed, and if she was angry, you’d dive for cover under the couch.” Now, Hoon says, her mother is “totally sweet, laughs and finds pleasure in simple things. I don’t know what to make of it.”
Barbara Ross of Atlanta told me that when her father became demented, “He said he’d had the most wonderful life and was the luckiest guy in the world.” He’d forgotten two acrimonious divorces and his business going bankrupt. “So what is wrong with forgetting that garbage and being happy in the moment?” Ross asks.
Even if doctors hadn’t heard the term, some reported seeing patients who fit the description. Oliver Sacks, MD, a professor at Columbia who writes lyrical books about people with neurological disorders, recounted how Ralph Waldo Emerson was cheerful in his sixties when he began sinking into “soft oblivion.” When a friend asked how he was, Emerson is reported to have said, “Quite well. I have lost my mental faculties but am perfectly well.” He could not remember his own work but continued to give lectures by reading his notes, joking that he was “a lecturer who has no idea what he’s lecturing about.”
I heard several theories about what might cause pleasant dementia. Dr. Sacks suggests it may result from, among other factors, deterioration of the frontal lobes, “particularly those systems associated with self evaluation, scrupulosity and anxiety.” Other doctors suspect damage to the left hemisphere of the brain, which deals with logic and analysis, rather than the right hemisphere, which perceives unity and connection. With the left brain wiped out, people might feel expansive joy.
What intrigues me is the similarity between pleasant dementia and the state that spiritual teachers encourage people to cultivate: acceptance, letting go, being fully present now. Peter Whitehouse, MD, professor of neurology at Case Western Reserve, says he’s a Buddhist practitioner and finds it “fascinating to consider what it means to live in the moment, because in many ways that’s what dementia brings.” He says memory loss has always been part of human experience. “The Egyptians wrote about it. I’m surprised the world’s religions haven’t taken this on. They’ve taken on death. Why haven’t they taken on the slow deterioration of one’s mental abilities?”
There appears to be no ongoing research into what makes one person with dementia become belligerent and another serene. No one, I told Dr. Sacks, is comparing the brain waves of monks in meditation with the brain waves of people with pleasant dementia.
“Well, they should,” Dr. Sacks replied. “I think this whole area is unexplored. And these are very deep waters.”
I don’t wish to romanticize the state or suggest that anyone aspire to it, because the pleasantly demented aren’t functional. My mother doesn’t remember where her clothes are or what day it is. Yet her equanimity and cheer seem preferable to the acute physical suffering I’ve witnessed in other endgames. Dr. Sacks said in our interview: “At 75, I sort of wonder what the future has in store. If I am going to lose it, I would prefer to lose it in an Emersonian way.”
That way was conveyed in Emerson’s poem, “Terminus,” which he wrote at 63 when he felt his mind slipping from him:
Lowly faithful, banish fear,
Right onward drive unharmed;
The port, well worth the cruise, is near,
And every wave is charmed.
What a sanguine injunction, I thought, not only for my mother but for those of us who may follow on that ship. May we sail without fear and may the weather be…pleasant.