Living Where Everything Is Forgotten: A Mother and Son's Struggle Toward a "Dementia-Friendly America"
My mother is washing dishes.
My mother is washing dishes.She’s using a paper napkin she found in the kitchen sink, and a little bit of leftover coffee from a mug on the counter. She scrubs at bits of egg stuck to a fork, sets it next to the saucer she’s just cleaned. Then she grabs the saucer, wets the napkin with the coffee, and washes the saucer again.
“Hey, Duchess!” I call to her from across the kitchen. “What’re you doing?”
“I’m getting all the train books ready,” she replies, looking cross. “She said they were eight coming, the children.”
She moves to the refrigerator, and begins to gather food for the people she imagines are on their way to this house where she has lived for 50 years: a half-empty Tupperware of minestrone, a hard-boiled egg, the bowl of oatmeal she refused to eat this morning. (“It’s too spectator pump,” she had complained, pushing the bowl away.) She piles these things onto the kitchen table, then heads off to her room, probably to dress for her phantom company.
By the time she arrives there, my mother will have forgotten what she wanted. Her 10-year-old Alzheimer’s diagnosis was recently reclassified; she’s now a 6 on the Global Deterioration Scale, a means of measuring the depths of dementia that tops out at 7. The Duchess will arrive at her bedroom, become distracted by something — a lampshade, her framed wedding portrait, my dead father’s key ring — and dressing for imaginary company will be forgotten. These days, for Maria Domenica Clemente Pela, pretty much everything is forgotten.
I don’t follow her to her room. I’ve got a kitchen to clean and a stack of insurance papers to fill out before I take the Duchess to her quarterly oncology appointment later this afternoon. A decade ago, I took my time with things: finished a project only when it was perfectly complete; awoke when I was done sleeping. Today, I’ve learned to take shortcuts. There’s never enough time to do everything, or to do anything especially well.
I am what is politely referred to as a caregiver.
I spend most of my days and some of my nights here at the suburban West Phoenix house where I grew up in the ’60s and ’70s, where my 91-year-old mother and I have been playing a decade-long game ever since she began losing her mind to Alzheimer’s disease: She is the Duchess of Pela, and I am her minion. I awaken her, bathe her, dress her, and feed her, after which she sits in her kitchen, a gentle expression fixed on her face, reading and re-reading the story of her life, a 249-page, handwritten essay she composed a dozen years before she began forgetting who she was and where she lived. Several times a day, she looks up from her journal. “Have you read this?” she implores. “It’s good!”
In the afternoons, the Duchess is restless. Her journal no longer holds her interest; she refuses to play with her little box of paste jewels. She’s anxious to get home to the house in northeastern Ohio where she hasn’t lived since 1942, worried she won’t be able to find it on her own. She paces, maniacally tidying her kitchen, distracted by some puzzling chore she must complete but can’t quite fathom.
I’m distracted today, too. I’ve received a press release announcing that Tempe has joined the Dementia Friendly America initiative. Introduced last summer at the White House Conference on Aging, this yet-unfunded program means to create a “national dementia friendliness,” one city at a time, by training individuals, businesses, and first responders to recognize and respond appropriately to people with memory impairments. Thirty-six towns and cities in Minnesota, where DFA was launched last year, have adopted the initiative’s four-phase roadmap; in March, Tempe became only the sixth city outside Minnesota to join the dementia-friendly fray.
How’s that going to work? I wonder, as my mother ambles into the kitchen carrying three handbags and a toilet plunger, a wilted brassiere wrapped around her wrist. How is an entire city going to learn to deal with old folks who insist that Herbert Hoover is president, people who can’t tell a bra from a bracelet?
The very idea of a dementia-friendly world strikes me as preposterous. I can’t convince the respite care workers I sometimes hire, who are supposedly trained to deal with the memory-impaired, not to tell my mother that her husband died three years ago. She thinks she’s 9, and little girls don’t have husbands. It upsets her to hear otherwise. Some of the medical professionals who look after the Duchess, when told she has Alzheimer’s, speak more loudly, as if volume adds clarity — even though she’s not hearing-impaired. If I can’t get my mother’s own children and grandchildren to take part in her care, how can Tempe expect to sell sensitivity training to a reluctant universe of clerks and bankers and doctors?
“Is this yours?” my mother asks, holding out the toilet plunger.
“Yes,” I lie, taking it from her. “I’ve been looking for it everywhere.”
“Well,” says the Duchess, looking me up and down. “It doesn’t look like it’s going to fit.”
Jan Dougherty, director of family and community services at Banner Alzheimer’s Institute.
The statistics are bleak. According to last year’s annual report from Alzheimer’s Disease International, the number of people with dementia worldwide has grown to just shy of 47 million. That figure is expected to double by 2030, and to triple 20 years after that. According to Latinos Against Alzheimer’s, the Latino population will see a 255 percent increase in dementias in its communities. For now, one in nine seniors has some form of dementia. Arizona alone will see a 71 percent increase in the number of residents with dementia over the next 10 years.
An ADI policy brief published in 2013 on the global impact of dementia claims that most governments around the world are unprepared for this oncoming health crisis, which will have an impact mostly on low- to middle-income countries with fewer resources to support demented people and their caregivers.
There are other hurdles to a dementia-friendly anything. According to that ADI report, about half of all dementia patients go undiagnosed, in part because most people figure there’s no point in being diagnosed when there’s no cure.
“We’ve got a long road ahead of us,” Jan Dougherty tells me when I call to ask about this Dementia Friendly thing. I know Dougherty in her role as director of family and community services at Banner Alzheimer’s Institute in Phoenix, where my mother is a patient. BAI is partnering with the Tempe project, and Dougherty is the liaison between the two.
“Right now, dementia is where cancer was in the ’60s or HIV was in the ’80s,” Dougherty explains. “People are really just starting to talk about this disease openly. There’s more education on the stupid Zika virus than there is on dementia. But we have to start somewhere.”
Apparently, Dementia Friendly Tempe is as good a place as any. Based on the World Health Organization’s 10-year-old Age-Friendly Cities and Communities program, which has nearly 300 communities in 33 countries, the Dementia Friendly movement has grabbed a toehold in Australia, Canada, the U.K., Germany, and Belgium. India, Singapore, and the U.S. have most recently jumped aboard. The program is designed, according to that press release, “to help communities better understand, embrace, and support residents living with dementia.”
Okay. But how? I watch an animated video on the DFA website in which ethnically diverse line drawings are made happier because everyone they meet knows how to interact with dementia patients. According to the cartoon, DFA will educate local businesspeople about how to support customers with dementia, convince employers to support employees who are caregivers, and teach law enforcement and city service providers how to deal with the demented. DFA is also proposing changes to transportation, public spaces, and emergency response that would allow people with dementia to interact in their community. In some cities, “memory cafes,” where memory-impaired people can gather, have made it onto the must-have list. Businesses will all, according to this plan, one day post a logo on their doors proclaiming they are dementia friendly.
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Signage is a big part of the DFA campaign, which right now doesn’t have a deadline or a completion date. Once things get going, Tempe will presumably be covered in printed graphics illustrating how to use a public restroom, and menus with symbols indicating the difference between a turkey sandwich and a hot dog.
The materials on Dementia Friendly America remind me of the early groundwork laid by the Americans with Disabilities Act of 1990, which imposed accessibility requirements like wheelchair ramps and Braille signage in public places, and led to a more welcoming approach to differently abled people. I wonder: Can the DFA initiative eventually have the same impact as the ADA, which is now a law?
“That’s the idea,” Tempe Mayor Mark Mitchell tells me when I call to pick his brain. “We’re in the beginning stages. So far we’ve had a kickoff meeting, and we’re assessing the city staff to identify its strengths. Then we’ll reach out to the faith community and legal professionals.”
“To ask priests and rabbis if they want to learn more about dementia?” I ask. “To request pro bono representation for Alzheimer’s patients?” I apologize to Mitchell for being slow on the uptake. But even with the help of the little cartoon, I’m still struggling to grasp how Tempe will implement a program whose four phases include vague bullet points like “Form a community engagement sub-team” and “Develop an organized process flow and timeline,” and wraps up with “Create and implement a community action plan.”
In Boston, a city roughly four times the size of Tempe, a pair of full-time salaried positions was created to advance this sort of dementia-friendly public education. Will Tempe do something like that?
“We don’t have the funding for that,” admits Mitchell, whose own mother has Alzheimer’s and lives in an assisted-living facility. “But we’re going to apply for grants, and put together a stakeholder group to oversee fundraising.”
In the meantime, Mitchell plans to begin networking with Tempe’s neighborhood associations, which he says are the best in the state, to get the word out about dementia. His grassroots strategy smacks of boosterism; how can people whose job it is to host home tours and throw pot lucks launch a dementia education initiative?
“One person at a time,” Mitchell replies. “Fifteen hundred people in my community have dementia, and I need to get the city educated on how to help them.”
Okay. But would Mitchell have climbed aboard the dementia-friendly bus, I ask, if his own mother didn’t have Alzheimer’s?
“I don’t know,” he answers. “Would you be writing a newspaper article about it if your mother didn’t have that same disease?”
Touché, Mayor Mitchell.
Tempe Mayor Mark Mitchell.
The Duchess and I are seated in the waiting room of her new general practitioner’s office, waiting for the results of her annual tuberculosis test. She is stressed out about getting home late for supper and being grounded by her father, who died in 1958, and I am entertaining myself by counting the number of times she tells me she hasn’t any pancakes in her purse (17 times so far, and she’s not carrying a purse today).
The woman seated across from us smiles at me. “My mother had dementia, too,” she quietly confides. I return her smile and think to myself, Okay, I’m about to have this conversation again.
“I took care of her for two years before we had to put her in a home,” she is saying, and I’m thinking, Two years? Really? Two.
“How difficult that must have been for you,” I say. “And how does she like it there?”’
“Oh, she died three weeks later,” the woman replies, after which the Duchess and I excuse ourselves and move to the other side of the waiting room.
A little while later, we’re taken to an examination room by a nice medical assistant named Juanita, who talks baby-talk to my ancient mom.
“Will you get up on the scale so we can weigh you, please, Miss Mary?” Juanita asks with a big pout, her words all syrupy, rounded vowels. The Duchess shoots me a look that clearly says, Get this person away from me! and I look back at her with an expression that replies, Oh, right, you’re the parent I inherited my crummy attitude from!
“My mother has late-stage Alzheimer’s disease,” I explain to Juanita as I pantomime how to get on and off the scale. “Sometimes showing works better than telling.”
Juanita smiles at me and turns to the Duchess. “Have any of your medications changed since last time you were here, Miss Mary?” My mother begins a long, disjointed explanation of why she chose to wear this particular pantsuit, indicating the sundress I’d put on her that morning. Juanita turns to me.
“Is she always like this?”
“She has late-stage Alzheimer’s,” I remind her, handing over an updated list of medicines. My mother is still trying to tell her pantsuit story when the doctor joins us. Rather than talk to my mother as if she were a precocious toddler, he ignores her entirely, speaking only to me. It turns out Her Majesty does not have tuberculosis.
When we get home, I put the Duchess down for a nap and then I call Olivia Mastry, the executive lead for Dementia Friendly America. I want to ask her, “How come everyone gets to have a mother who dies except me?” I’d like to say, “How come health-care workers all call my mother Miss Mary, as if she were a plantation owner in antebellum Atlanta?” Instead, I ask how much importance DFA plans to place on training medical professionals to deal with demented people.
Plenty, she promises. “We have tools and resources that guide each sector of the community, and there’s a real emphasis on physicians and their staffs. It’s not all clergy members and clerks. We’re still defining what dementia-proficient means for medical workers, and once we do, everyone from doctors on down will be held to a standard.”
Really? Training the entire medical community seems like a pretty tall order. I call Dr. Pierre Tariot, my mother’s doctor at Banner Alzheimer’s Institute, and ask him if this seems doable to him.
“I’d like for it to be,” says Tariot, a geriatric psychiatrist and clinical researcher who’s spent his career studying people with brain disease. “It’s going to take a long time. When you’re talking about social re-engineering, you have to look at who needs to be educated first, and I agree with you that it’s general practitioners and hospital personnel who need to be dementia-capable right now. For the most part, they are not. Maybe attorneys next, and then police and firefighters, for sure. And we really need to do a better job for the people who are actually providing care to dementia patients.”
While Dr. Tariot and I are saying our goodbyes, the respite care worker arrives for her twice-weekly shift. “Hellooooooo Miss Mary!” I hear her cooing in a voice typically reserved for really cute puppies. “Remember me?”
Maybe, I think to myself, I’ll die in my sleep tonight and I won’t have to deal with any of this anymore.
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