Once a week, I work in a small social program for older people. We sit in a circle, and Rose passes around a photo of a black tombstone. “Now I think this one is lovely,” says Rose. White-haired heads nod in agreement. “And I thought this one was cute,” she says, sending around another photo of a monument constructed of two overlapping marble hearts. Everyone peers at the gravestones, attempting to remark before passing the picture along. “Nice and shiny,” says Agnes.
Rose’s son-in-law is a minister. He does a funeral a week, and he usually takes Rose with him. Apparently Rose takes her camera. “This one is too small. If they forget to cut the grass, you’d trip right over it,” says Rose. “I don’t want anyone tripping over me.”
I’m the one who suggested that everyone bring in snapshots to get the conversation going. I never could have imagined this.
“My brother died, and they still don’t have a marker for him,” says Charlie, squinting at the photo with his good eye.“That’s why I’m making sure I get the stone picked out ahead of time,” says Rose. “Besides, my daughter might get one I don’t like.”
People in this crowd get right to the point. They all know that nothing lasts.
After high school, I lived in a boarding house and took a job as a janitor in a shopping mall. I rode the bus to work with a bunch of people with Down’s syndrome. Margot worked at the Burger King bussing tables, Martin worked at the bowling alley and Fred mopped the floor at the laundromat. I vacuumed an acre of carpet each morning before the clothing stores opened, wiped fingerprints off mirrors and chrome racks, and collected the trash shoppers dropped on dressing room floors. I once overheard a manager tell the sales clerks, “Ignore the cleaning staff. Pretend you can’t see them.” The customers ignored me too. I was invisible.
At the end of the day, I rounded up my colleagues, who sometimes got lost in the mall, and we waited together at the bus stop. Other passengers looked away.
Being invisible was a new experience for me. My family was well-known in my hometown, and wealthy, and as a child I couldn’t walk down the street without being recognized. But I learned what it was like to be unseen as I pushed my vacuum cleaner over the endless carpet. Sometimes I was indignant. Other times, I burst into tears.
Years later, after giving up my janitorial responsibilities, I struggled through college. Eventually I had a family of my own, and now I live in Canada. My mother, in New Jersey, had a bad stroke.
Mom lay on the hospital bed under a buzzing fluorescent light. Her name, spelled wrong, was scribbled on a piece of typing paper and taped to the wall over her head. I climbed awkwardly over the guardrail and into the bed with her. Her hair stuck out from her skull like the pinfeathers of a bird. Her skin stretched tightly over her nose and cheeks, a mere covering for the bones. She clamped her eyelids shut in two bald seams. A trace of pink lipstick remained on her thin lips. Her teeth, all her own, had become crooked and did not look entirely human in her mouth. My mother and I had always had a freakish resemblance to each other.
I didn’t know if she was conscious. “Mom, you look like a million bucks in that hospital gown.” I squeezed her in my arms and kissed her. She grimaced hard and rasped, “Green is not entirely my color,” without opening her eyes.
I spent the next two years as my mother’s long distance health care manager. Mom had vascular dementia and now, stroke damage. Her husband had moderate Alzheimer’s disease. I was able to spend a week each month with her.
My mother’s vulnerability was profound. The woman who slapped my wrist if I held my fork incorrectly now ate with her hands, and she knew it. All her life a great reader, she could not see well enough to read. She lost the companionship of her husband due to his Alzheimer’s disease—he couldn’t converse or understand her. He also scared away the few remaining friends they had. Old people who are not demented often avoid people who are.
Mother’s friends were gone, her family gone, her dry cleaner gone, the man who made her dresses gone, her doctor had died, and the new one showed her no deference. Though she had endowed her church with a garden, not one parishioner could spare an hour a week to visit her and read her the Bible. Her Buddhist daughter found herself reading aloud from the book of Job.
Old people are disturbing. After all, if you don’t die young, you’ll turn into one. Better not to see the old lady sitting alone in the department store cafeteria or the old man with the walker, struggling to get across the street before the light turns red. Better that they be invisible.
I saw a whole new world because of Mom. People just like her waited in hospitals, in doctors’ offices, lined the halls in convalescent homes, where they grabbed at my clothes, begging me not to leave. Suddenly, I saw the gray-haired man buying Lotto tickets at the convenience store. I saw the lady sitting in the park with huge bags of stale bread for the pigeons.
After Mom died, I volunteered to visit an elderly woman through the Victorian Order of Nurses (VON). Agnes and I sat in her filthy living room, reliving all the mean, thoughtless slights and insults she could remember. Many of her friends were gone, she was feuding with her family, and she was showing signs of dementia. She smelled bad and she was cranky.
Agnes needed to get out of the house and make new friends but I couldn’t find anywhere to take her. She was just confused enough to stick out in a healthy group of people. She needed a program that was tailored to her memory problems, a place where, with some help, she could make friends. I found out that Paula Yanch, a nurse, had been hired by the VON to start up a program for lonely older people and their caregivers. I signed on as a volunteer. I had no idea what I was getting into.
Breakaway started with Agnes and a neighbour of Paula’s named Kate, who also had early Alzheimer’s disease. Seated on donated lawn chairs in the activities room of a local community center, Agnes and Kate swapped tales of slights and hardships. Both had lost their husbands and felt neglected by their children. They took turns shaking their heads in woe. Agnes had trouble finding words, but Kate was adept at supplying them. Kate couldn’t remember anything after 1995, but Agnes couldn’t care less. After an hour, the two of them stopped complaining. Instead, they pointed and laughed at Paula and me as we tried to make an electric kettle work. To their satisfaction, we never did.
Usually, when you meet someone, you try to impress them. You’re investing in the future of a new relationship. This may not work when a person has Alzheimer’s. The future is inconceivable; the past is confusion. “Do you remember when…” is a humiliating way to start a conversation. At Breakaway, the present is the only currency.
Emotions endure long after organized memory has been dismantled by disease. Ivy, a large, sweet-faced woman in her eighties, often wells up with tears and says, “Did you hear we lost our dad?” He died sixty years ago. But I comfort her right now with a hug and a tissue, and she brightens up.
A few Breakaway members have terrible pasts: one woman beat her children until they bled. She can’t remember doing it. A man taunted his wife with his mistresses throughout their marriage. Now he is completely dependent on her.
Some Breakaway members enter a kind of rapture, captivated by a vase of plastic flowers, the light shining across the windowsill, the bright red of a soda pop can. When I took John for a walk, he wouldn’t budge, mesmerized by the bits of mica glittering in the cement sidewalk. He pointed, entranced by something I didn’t see because I wasn’t looking. Everybody knows something you don’t. You just have to find out what it is.
Breakaway runs two days a week, four hours a day. Paula screens all our clients to make sure they can handle a group situation, and don’t have aggressive outbursts. I help people out of plastic rain hats and rubber boots. “How are you, dear?” everyone asks as they pat and hug me. They treat me like I’m fourteen. The conversation rumbles into gear. Every week Rose tells a story. She tells how she put her socks in the microwave to warm them up and almost set the house afire. Smoke billowed into the kitchen as her daughter charged downstairs screaming.
“I think it was the rubber in the toes. They were all black and bubbled up.” Rose smiled and did not look at all contrite. Everyone savored her story. How silly her daughter was to get upset about a little thing like a house fire.
I noticed that Charlie’s socks were drooping around his ankles. He’d cut the elastics. “Too tight. Bad for the circulation,” he told me. There was general agreement that tight socks are bad for the legs. “I cut mine down, too,” confided Rose. I made a mental note to chop the elastics off my socks the minute my circulation begins to suffer.
Charlie is the one of the few men in the group, but he doesn’t mind. We fawn all over him like he is Louis XIV. Charlie has an air of serenity, probably because he’s a bit deaf and people only make an effort to tell him what is important. He has Cary Grant glasses and is blind in one eye.
When Paula went to his apartment to assess him, she found a shrine of photos and candles dedicated to the memory of his wife. Charlie spent all of his time mourning and crying himself sick. Paula took his hands and said, “Charlie, after today, throw the candles out. Put the pictures away, except for one. And I’ll be here to pick you up tomorrow at noon.” The only time Charlie leaves his house is to come to Breakaway.
Everyone at Breakaway has lost spouses, children, homes, careers and identities. Each person has a broken heart. No one knows if they’ll be back. Kate, one of the original members, was with us at Breakaway on a Tuesday afternoon, and died over the weekend. Our members are vulnerable and brave. They leave their tiny apartments and confront an unfamiliar and confusing world. They’re forgotten and invisible most of the time. But at Breakaway, they shine in vivid, living color.
We’ve made cards for children in Africa, valentines for hospital patients, and Easter bonnets to sell at our fundraising auction. The men were particularly proud of theirs and were reluctant to take them off. We’ve listened to a blind banjo player, patted a hairless dog in a pink sweater, and enjoyed a three-hundred-pound tap dancer who threw herself around the room with incredible force and enthusiasm and then joined us for tea.
We’ve never lost a Breakaway client because they didn’t like it. In a year, we’ve never lost a volunteer either, and we’ve attracted new ones. We all feel we get more than we give. Chrissy, who works in a nursing home, says, “At Breakaway, you can’t do anything wrong,” and that’s the truth. The goofy atmosphere is very forgiving. And younger people are getting interested: three teenaged girls have asked me if they can join us over the summer. They’ll help with the crafts, the Bingo and with the Strawberry Social, our big summer event. We’ve even invited the mayor.
There’s no reason why this can’t be done elsewhere. In the current eldercare crisis, Breakaway offers a profoundly low-cost template: I raised half of our operating costs with two phone calls. In my mind’s eye, I see relief for the isolated elderly. I see caregivers sustained by regular respite. I see teenagers and octogenarians sharing jokes. I see cheerful, broken-hearted people, not dwelling on the future or the past, living now, visible again.