#1
Just how and when do you step in to help your aging—and so independent—parents?
BY DOUGLAS TODD My mother and stepfather were married for 30 years. They lived on a steep hillside on the North Shore of Vancouver, surrounded by evergreens and views of the Coast Mountains. When they retired, they settled into North Shore culture, appreciating long-time neighbours and socializing with their vibrant FM (Formerly Married) Club. But by his late 70s, my stepfather, Eric, was becoming worn out by physical illnesses. And my mother, Mary, suffered significant memory loss.
Like many aging couples, they cared for one another dutifully, compensating for the other’s ailments of body and mind. In the midst of this relative calm, my brother, stepsister and I gingerly tried to discuss their next move. Perhaps, we asked, they could bring in caregivers, downsize to an apartment or move to a retirement community?
My mother and I visited two stylish private seniors homes, which she barely recollected a day later. My stepfather never even went on the tours, because he was too racked with pain. Each time we tried to consider options available, it felt as if we were starting from scratch. How could we have a real family discussion about our parents’ deteriorating health and quality of life? We’re not proud of it, but we basically gave up trying; all we felt we could do was wait for a crisis to force the issue.
It turns out we aren’t alone. The prospect of talking to increasingly fragile parents about their future can be “one of the most difficult challenges adult children will ever face,” says Clarissa Green, a Vancouver therapist. “People often tell me they don’t want to raise sensitive issues with their parents about bringing in caregivers or moving,” she says. “They’ll say, ‘I don’t want to see Dad cry.’”
But Green usually responds, “What’s wrong with that?” Adult children, she says, need to try to join their parents in grieving their decline, acknowledge their living arrangements may no longer work and, if necessary, help them say goodbye to their beloved home. “It’s sad. And it’s supposed to be. It’s about death itself. I urge baby boomers not to run away—to listen to their parents’ stories and regrets and the slow-motion process of letting go of pieces of themselves,” Green says.
“One useful question to ask your parents is, ‘How would you know when it’s time?’” she says. In her family-counselling sessions, Green has heard all kinds of answers. Some seniors respond that they’ll know it’s time to allow caregivers in or move out of their home “when I can’t zip up my own fly” or when “I can’t remember who my wife is.” Going at it another way, Green says it can be useful for adult children to ask, “How would you know when it’s time to talk about this as a family?” One widow answered she’d know the moment had arrived “when she realized she didn’t want to be left alone, looking out her window at night at all that darkness.”
There are almost four million men and women over age 65 in Canada. Nearly two thirds of them manage to patch together enough support—from family, friends, private and government services—to live independently until virtually the day they die, according to Statistics Canada.
Of the Canadian seniors who live to 85 and over, almost one in three end up being moved—sometimes kicking—to group living for the last years of their lives. Even in the best-case scenarios, such dislocations can bring sorrow. “Often the family feels guilty, and the senior feels abandoned,” says Charmaine Spencer, an adjunct professor in the gerontology department of Simon Fraser University. Harried with their own careers and children, adult children may push their parents too fast to make a major transition.
Val MacDonald, executive director of the B.C. Seniors Services Society, cautions adult children against imposing their views on aging parents. “Many baby boomers can be quite patronizing,” she says. Like many who work with seniors, MacDonald suggests adult children devote many conversations over a long period of time to collaborating on their parents’ future, raising feelings, questions and options—gently, but frankly. Many middle-aged adults, according to the specialists, just muddle through with their aging parents.
For a variety of reasons, including my mother and stepfather’s determination not to be a burden, the attempts by my brother, stepsister and I to initiate a solid dialogue were only partially successful. Despite his stoicism, my stepfather agreed we could buy him a walker and allow a physiotherapist into their home to lead him through some therapeutic exercises. But when I got their approval to bring in a caregiver to cook, they proudly rejected her first stab at a lunch, quietly asking me to tell her not to return.
When the parents of Nancy Woods of Mulmur Hills, Ont., were in their mid-80s, they made the decision to downsize from their large family home to an apartment in Toronto. As Woods’s parents, George and Bernice, became more frail, she believed they knew she had their best interests at heart. They agreed to her suggestion to have Meals on Wheels start delivering lunches and dinners.
However, years later, after a crisis, Woods discovered her parents had taken to throwing out the prepared meals. Her dad had appreciated them, but Bernice had come to believe they were poisoned. “My father was so loyal,” says Woods, “he had hid that my mother was succumbing to Alzheimer’s and paranoia.”
To her horror, Woods discovered her dad and mom were “living on crackers and oatmeal porridge” and were weakening from the impoverished diet. Her dad was also falling apart with the stress of providing for Bernice—a common problem when one spouse tries to do everything for an ailing partner. “The spouse who’s being cared for might be doing well at home,” says Spencer, “but often the other spouse is burned out and ends up being hospitalized.”
Fortunately, outside help is often available to people slogging through the often-harrowing process of helping their parents explore an important shift. Sons and daughters can bring in brochures or books on seniors’ issues, as well as introduce government health-care workers or staff at various agencies, to help raise issues and open up discussions, says Val MacDonald, whose nonprofit organization responds to thousands of calls a year from British Columbians desperate for information about how to weave through the dizzying array of seniors services and housing options.
The long list of things to do, says MacDonald, includes assessing their ability to live independently; determining your comfort level with such things as bathing a parent; discussing with all household members whether it would be healthy for an elderly relative to move in; monitoring whether, out of pure duty, you’re overcommitting yourself to providing a level of care that could threaten your own well-being.
There is no pat answer to lifestyle changes, and despite the best efforts to have heartfelt discussions, the reality is that dramatic events often force seniors and their loved ones to make snap decisions. “There’s almost always a trigger,” says MacDonald.
The loss of a spouse can suddenly cause a senior to feel lonely, depressed and unable to care for himself, says MacDonald. So can a drastic drop in income. The most common trigger, however, is flagging health.
All things being equal, many specialists say it’s best for seniors to live in their own homes as long as possible. But the time often comes when ill health or extreme loneliness close down that possibility.
The shock phone call that catapulted Nancy Woods and her parents into action came from her distraught dad. “I got this frantic call from my father that he couldn’t cope anymore. My mother was setting fires in the apartment,” she says. “He didn’t want to see it for what it was. Up to then he’d been in denial.”
Without knowing she was following the advice of experts who recommend using outside sources to stimu- late frank discussion with parents, Woods grabbed a copy of The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life. She read sections of the book to her dad and asked him, “Who does that sound like?” Her father replied, “It’s Mother. It’s dementia.”
At that point, Woods said, her dad finally recognized their tragic predicament. She told her father she would help them move out of their apartment. “He nodded. He didn’t rant or rave. He took it on the chin.”
Woods regrets that she “had not noticed small details signalling Mom’s dementia.” But she’s satisfied her dad accepted his passage into a group residence, where he and his wife could stay together in a secure unit where staff were trained to deal with patients with Alzheimer’s disease. “From the moment they moved into the Toronto nursing home, their physical health improved. On the other hand, it was the beginning of the end in terms of their mental abilities. Perhaps they couldn’t get enough stimulation. Perhaps it was inevitable.”
After my stepfather died in 2002, the grim reality of my mother’s sharply declining memory set in starkly. With her expanding dementia, Mom was adamant about staying in her large North Shore house, even though she was befuddled about how to cook, organize her day or take care of herself. For the next three years we effectively imposed decisions on her, most of them involving bringing in caregivers, including family members. In 2005 Mom finally agreed, although she barely knew what was happening, to move to a nearby nursing home, where, despite great confusion, she is happier.
During the time my mother lived in her house, my brother and stepsister and I had to heed the advice offered by virtually every seniors’ specialist, including MacDonald: We must allow our parents, when other efforts have failed, “to live at risk.”
“Children can’t make all the decisions for their parents,” MacDonald says. “Middle-aged offspring can carry around an awful lot of guilt about that. But they can’t do everything for their parents or be there all the time.”
That said, I wished we’d long ago heeded the recommendations of those who say it’s never too early to start the emotionally tough process of talking to your aging parents about their future. Before crises hit. As Spencer says, the sense of dislocation that comes with making an important passage can be “a very hard adjustment for a senior at the best of times. But it’s worse if it’s not planned out.”