Alzheimer’s On-going Journey of Loss

Originally published in Homemaker’s Magazine, May 2008.

National Magazine Awards Foundation Finalist


I’m just being tested to be on the safe side. That’s what Norma Gaudet, then 62, told herself as she made arrangements to be tested for Alzheimer Disease in the spring of 2006. The retired nursing instructor had reason for concern: her mother had developed the progressive brain disorder in her 70s and her sister Marion, 12 years Norma’s senior, had recently been diagnosed and placed in a nursing home. And Norma suspected that the memory-stealing disease had affected others in her mother’s family as well. But family history wasn’t her only concern. “I’d go into the store and I wouldn’t be able to remember what I was there for, even after I walked around. I’d come home with milk and find I already had milk, but that I’d forgotten the things I actually needed.” Still, she hoped for the best: after all, she told herself, she was still young.

Norma told me her story on a grey November day almost 18 months ago as we sat sharing tea in the living room of her bungalow on a quiet subdivision street in Dieppe, New Brunswick, her cosy home decorated early for Christmas with Santa dolls, teddy bears and lights. (“Norma could open a WalMart with all her Christmas decorations,” laughs friend Jackie Landry in her light Acadian accent. She’s known Norma since they attended school together in the early 1960s.) Norma, her brown hair cut short, held a small vinyl-covered agenda in her hand, referring to it again and again to get her dates right as she traced the timeline for me. Sometimes she’d repeat herself, and then she’d catch herself and flash me a smile. “You know I have a condition,” she’d say wryly.

The news Norma got that spring day wasn’t what she wanted to hear. She had Alzheimer Disease. On one hand she wasn’t surprised. “I knew my own behaviour.” On the other, she says she was shocked speechless. “I didn’t hear anything they said after they said that word. I had to ask them to repeat it.” Later at home, she couldn’t sleep. “I thought, oh my God, my life is ended. And I was scared for Jo-Anne.”

Jo-Anne is Norma’s only child. She’d grown up watching her parents care for her grandmother, who they called Mimi. “When I was a teenager, we never did anything as a family unit because someone always had to be watching Mimi,” she says. “If my mom had a meeting, Dad and I would stay home with her. If I had a school event, Dad and I would go and Mom would stay home.” Her father, Ed, had died of cancer in 2000. Recently divorced and a cardiac care nurse herself, Jo-Anne had moved from Dieppe to Houston, Texas months just before her mother’s diagnosis. “My first reaction was, I’m moving home. But Mom wouldn’t let me. She told me she didn’t want me to put my life on hold.”

Perhaps more than most who are diagnosed with Alzheimer Disease, Norma Gaudet knew what she was facing. As well as nursing her own mother for years, as a career nurse she regularly cared for Alzheimer’s patients. She’d served as the president of the local chapter of the Alzheimer Society. She’d even written her 1991 Master’s thesis on the disease: “Women Caring for Women: Daughter’s Perceptions of Their Experiences Caring for Their Mothers as Alzheimer Disease Victims.” In it, she called the disease “an ongoing journey of losses.”

Norma did not want her daughter to have to take that journey, of gradually losing her life—her career, her friends, her autonomy—while caring for her mother as the disease robbed Norma of hers. She’d told Jo-Anne as much: “Even when I was a teenager, she said if I ever get this disease, you’re not going to change your life to look after me,” recalls Jo-Anne. Not that Norma was completely selfless. That November day, she admitted to me that with her daughter in another city, it would be easier to make her own choices for as long as possible. But even as she told Jo-Anne not to come home, Norma knew she couldn’t manage alone.

Enter the friends one doctor dubbed The Magnificent Seven.

There are, in fact, more than seven of them. My mother Marie Pittaway is one: she and Norma had worked together since the 1970s as instructors at the Moncton campus of the New Brunswick Community College. Jackie Landry, Norma’s school chum, was another. Don Breau had known Norma since her days as a nurse trainee in the early 1960s, and he and his wife Pam had become best friends with Ed and Norma once the two men started playing old-timer’s hockey together in the 1980s. Ed’s sister Marie-Stella Landry, former coworkers Yvonne Reicker, Rose Marie LeBlanc and Rachel Gallant helped as well, as did old friends Pauline Goguen and Rita and Stan LaBrie, new neighbour Janet Jardine, and Lauriel Richard, who’d gotten to know Norma through her work with the Alzheimer Society. “You reap what you sow,” says Pam Breau, who remembers being drawn to Norma’s laughter as they watched their husbands on the ice and later came to consider the Gaudet living room her second home. “Norma had given to people all her life, and it’s a testament to her that everyone wanted to help.”

Not long after Norma’s diagnosis, Pam and Don met with Norma and her doctor—Jo-Anne participated by phone from Houston—to discuss what steps needed to be taken. Sure, they’d noticed that Norma had been repeating herself more, and given her family history and forthrightness, they thought she might be in Alzheimer’s early stages. Still, the doctor’s evaluation shocked them: Norma’s disease was advanced. “We wanted to talk the doctor out of what she saw,” says Pam now. Unless she had good support, the doctor said, Norma couldn’t keep living on her own. She needed help with her finances, with her meals, with simply keeping her home in order.

Jo-Anne and Norma asked Don, a financial advisor, to help manage her bills. Then Norma and Pam sat down to call and explain the diagnosis to Norma’s friends. The doctor wanted someone to spend time with Norma every day of the week. Several signed up for specific days—“I’m her Thursday friend,” says Jackie—and others subbed in as needed, with Lauriel picking Norma up for her monthly Alzheimer Society meetings where she continued to offer advice to caregivers in monthly support group meetings. (“She’d explain what the person might be going through, and then she’d tell them she had Alzheimer’s herself,” says Lauriel. “They’d look at her in awe.”) To aid Norma’s memory—and make sure the friends knew how things were going—they started keeping a visitor’s log, where Norma had her “honoured guests” write what they’d done and how she seemed to be doing.

As they shared stories, her friends realized that Norma had been struggling with Alzheimer’s longer than they had realized. Each had seen clues, but none had put the picture together—or perhaps none had wanted to. There was the trip to Halifax for a Cancer Society meeting (another of Norma’s volunteer activities) when Norma couldn’t remember which hotel she was supposed to stay in. She’d stopped playing golf. And she’d taken some “just in case” steps: a year before her diagnosis, she had dental work done, saying it was in case she developed Alzheimer’s some day and couldn’t tell people her teeth hurt.

And then there were her finances. It took almost a year for Don to unravel the unpaid bills. As he looked back over her records, he could see that things had started to deteriorate around 2002. “Before that, her records were great, her bills were paid on time. After that, a mess.” He and Jo-Anne arranged to divert Norma’s mail to a post office box so Don could ensure that bills no longer went astray.

Despite the challenges, the friends’ daily visits weren’t grim. “Every time you’re with Norma, you laugh,” says Jackie. Norma’s husband Ed hadn’t complained when he’d had cancer, Norma said, so she wouldn’t complain now either. When what she called “her stupidity” caused problems, she’d tell people that Ed must not be an angel yet, or he’d have protected her from making a mistake. When my mother got lost on the way to taking Norma to a hairdresser’s appointment Norma looked over at her in the driver’s seat and said “I think you might be the one with the condition.”

“There’s always laughter when we’re together and genuine friendship,” my mother told me when I asked her if watching Norma go through this was hard. “It makes you realize how important friendship is, in good times and in difficult times—and that there can still be fun in the difficult times.”

As the friends settled into a routine, things seemed to be going well. Norma’s doctors had put her on two drugs, Aricept, a memory enhancer, and Lipitor, an anti-cholesterol drug that has shown some benefit to people with Alzheimer’s, eventually adding an anti-anxiety drug as well to help Norma cope with the constant worry of knowing she was forgetting things. “With the drugs, I’m like a new person,” Norma said. “Before, my mind was in a fog. Now, I can remember.” Still, her test results didn’t show the gains she thought she was seeing.

Jo-Anne made trips home regularly. It wasn’t easy for her to be away but coming home was challenging, too. Friends who spent a few hours a day with Norma thought she was doing fine, but Jo-Anne, staying for days, picked up on clues that her mother wasn’t holding things together as well as others thought—or hoped—she was. She could tell a story or share a joke, but those who knew her saw her mixing up names and timelines—talking about Ed’s father at Ed’s funeral, when the older man had predeceased his son, or about how Ed loved the living room furniture, when she’d bought it after he’d died.

Norma, concerned about losing her independence, grew more anxious with each of Jo-Anne’s visits. Her fears—that Jo-Anne was going to have her “locked up”—would get expressed as fact: “Jo-Anne wanted to lock me up from the beginning,” she told me. Ironically, it was a dynamic Norma had written about in her Master’s thesis after interviewing 18 daughters who were caregivers to their own mothers. “The daughter must protect the mother,” she wrote, “even insist on doing things to ensure that parent’s very survival. The mother, for her part, is struggling against the devastation and panic of losing control—the erosion of her autonomy.” Fifteen years after penning those words, they were playing out in Norma’s own home.

***

“I always knew it was a possibility that my mother would develop Alzheimer’s but never in my wildest dreams would I have thought it would happen this early. Mom was just 62.”

It’s January, 2008, and Jo-Anne is talking to me on the phone from Norma’s home in Moncton. Both she and Norma worry about the likelihood of Jo-Anne developing the disease. But “I can’t worry about it and be a wreck for 30 years,” says Jo-Anne, now 36. “Maybe I won’t get it. Maybe they’ll develop a magic pill. Maybe I’ll get hit by a bus tomorrow. Right now, I have to just focus on my mom.”

Jo-Anne was supposed to visit in mid-February, but a scare brought her home early. Norma’s friends had all noticed that she was getting worse. Ingrained habits were being erased: The woman who prided herself on looking sharp was forgetting to wash her hair. Getting dressed, she’d put two socks on one foot and none on the other. The nurse who had made thousands of hospital beds couldn’t remember how to put a sheet on her own. Short-term memories and good judgment were sliding away: She tried to warm a pair of socks in the microwave, almost setting them on fire. Still, there were moments of clarity. “There’s no predictability to it,” says Pam. Her caregivers let Jo-Anne know and asked Norma’s doctor to reassess her. They took steps to keep her safe at home—she didn’t use the oven anymore and everyone kept a closer eye on her. What they didn’t consider was a threat from outside her home.

In January, Don discovered that the license plates on Norma’s car had been stolen (Norma had stopped driving, but Don kept the car in shape for when Jo-Anne visited). It didn’t take police long to spot them, on the vehicle of a man Norma had hired to shovel snow. (Don had already arranged with someone else to do that task.) At around the same time, Norma withdrew a large sum of cash from her account. No-one knows where it went, but Don has his suspicions about that and other cash withdrawals. “I think somebody’s had a meal ticket for a while,” he says. It’s impossible to prove: Norma can’t remember what withdrawals she made or why.

“You just don’t want to believe that there are predators looking for someone vulnerable like Norma, but there are,” says Pam sadly. She called Norma after the license-plate incident and discovered the man was in Norma’s home with her. It simply wasn’t safe for Norma to be on her own anymore.

And so Jo-Anne returned to Dieppe to face the next step: moving Norma into care. “I know it will be better for her,” said her friend Jackie before the move. “Still you feel like you’ve failed her. But it’s not a disease you can make better.” Even after the move, her friends say they’ll stick to their “Norma days” for as long as Norma enjoys getting out or simply visiting with them. “I’m still her Thursday friend,” says Jackie.

Norma and Jo-Anne had talked about such a move when Norma was first diagnosed—in fact, Norma had selected the small care home where she wanted to go. But still, the move wasn’t easy. “All of the memories of my Dad are here in the house, and I think part of her thinks that if she moves she’ll lose those memories,” said Joanne quietly a few weeks before the move. “But it’s become too dangerous for her to be on her own.”

Norma was angry, accusing Jo-Anne of putting her away. Still, whether it was one of the disease’s small mercies or a glimmer of Norma’s own understanding of what her daughter faced, her anger, like her memories, slipped away. “It’s hard,” says Jo-Anne simply. “I’m looking at my mom sitting there, and it’s not my mom. There’s less and less of her there. It’s a continuous loss.” What’s gone is the sharing of life’s daily challenges and rewards, the little stories we tell the people we love, the problems we seek their advice on. Norma knew it would happen: in her thesis she called it “the loss of mutuality in the relationship.” While we understand the loss caused by death, she wrote, we don’t understand Alzheimer’s loss. “What has died in victims of Alzheimer Disease is the personality…[the] qualities that make a person what … she is.”

In early February, Jo-Anne, Pam and my mother helped Norma decorate her new bedroom in the home she’ll share with half a dozen other patients. They put up family photos and made the bed with new linens. Don came to pick them up and Norma showed him around. Twenty minutes later, as they sat in a restaurant sharing supper, he said, “You know, that’s a nice room you’ve got there.” Norma looked up at him and smiled. “Oh, have you seen it?” she asked. “Yes,” he replied. “I have.”