Putting a Face on Home Care
The world, as Bob Crowley knew it, began to crumble around him one spring day in 1998.
At the Ft. Lauderdale Airport, Crowley made his way through the queue with his frail parents in tow. He had flown to Florida to bring them home to Toronto after wintering in the south. Peggy, his 87-year-old mother, suffered from advanced Alzheimer’s and had little idea what was going on. His father, George, at 88, had a heart and lung condition and was breathing with the aid of an oxygen tank. In fact, Crowley carried extra cylinders to cover the entire trip — from their Florida condo to the airport, in the air to Pearson International and finally to their home in midtown Toronto — an excruciating four hours.
Their 11 a.m. flight, however, was delayed until mid-afternoon. There would be barely enough oxygen for his father to cover the delay at the airport, let alone the rest of the trip home. The ticket agent suggested switching to another airline, but couldn’t guarantee the carrier would take his father’s oxygen tanks.
“Mr. Crowley,” concluded the agent, “I think you’ve got a problem.”
That was an understatement. For the next two hours, Bob Crowley was tied to an airport phe trying to find a medical supply company that would rent oxygen tanks he could take out of the country, while contending with airline representatives who initially wouldn’t allow the tanks onboard. Not the least of his worries, his disoriented mother was becoming increasingly anxious, while his father panicked over his ever-depleting oxygen supply.
“I had been general manager at a national company for 20 years. I could run it with my eyes closed,” Crowley says. “But you get into these personal situations and you’re struggling — trying to make some sense, some procedure — because it’s all brand new, but you’re not trained for it.”
Despite making it home successfully, the ordeal left physical and emotional scars. Within a year both Crowley’s parents had died in hospital – his father of heart failure, his mother of complications due to Alzheimer’s. Crowley’s 10-year ordeal as an informal home caregiver was over. It had cost him his job, severely interrupted his home life and left him emotionally drained.
Then last June, Crowley was invited to participate in CARP’s National Forum on Home Care at a hotel in downtown Toronto. That day, he and 200 other delegates invited from across Canada discovered just how many “Bob Crowleys” there are in Canada and how widespread and deep are the problems facing informal home caregivers.
As a centrepiece of the day-long forum, two Queen’s University researchers – Malcolm Anderson and Karen Parent – presented their survey on Canadian home care-giving, based on interviews with 286 people, data from 265 home care organizations, letter responses from 44 health associations and trade unions and 397 individual Canadians. Their 90-page report — conducted between January and June of this year – concluded that home care in Canada lacks leadership, has inadequate funding, is in danger of becoming overprivatized, suffers from insufficient research and limited public awareness and passes on too great a burden to individual communities, volunteers and informal caregivers. In the researchers’ words, “home care is underfunded, undervalued and overstressed.”
Eager to receive the Queen’s University survey findings, Federal Health Minister Allan Rock arrived at the forum to respond to CARP’s challenge to “put a face on home care.” Not unexpectedly, Rock offered genuine concern over the “fragmented” state of healthcare delivery and reiterated Ottawa’s intentions to increase transfer payments to the provinces (over the next five years) by $11.5 billion, provided all of it went to healthcare. The reality is that in 1998, all governments in Canada spent roughly $2 billion on home care – a mere three per cent of the country’s $76.6 billion overall healthcare allocation.
Alarming enough, but in spite of government hopes to see a greater integration of institutional, community and home care, the health minister noted a further frightening statistic about the apparent offloading of the care burden onto the family: “One in five adult women,” Rock said, “is now looking after someone in the home who is either chronically ill or disabled… and those women spend an average of 28 hours a week in that caregiving role.”
For informal home caregiver Joanne Duffie, who fits Rock’s profile, 28 hours would be a walk in the park. About 1991, Joanne’s then 76-year-old mother, Monica Barreca, began forgetting things. When memory loss began threatening Monica’s ability to live independently at her home of 50 years, Duffie’s brothers tried to have their mother moved to a nursing home. The courts granted the brothers Power of Attorney, but Monica was allowed to stay in her Leaside, Ont. home. Duffie (living just minutes away) acted as her appointed home caregiver; putting her part-time job as a conference planner on hold and began taking care of her mother seven days a week.
“Up at 6 o’clock,” explains Joanne Duffie, reading from a daily journal she began writing four years ago. “Cut the grass. Did other stuff around the house. Had a shower. Then went to Tim Horton’s. Got Mom a hot chocolate.”
What the diary did not record was the “other stuff.” Each morning Duffie not only got ready for a day of helping her mother, but also saw her three grown children off to work. Neither did the diary record that by mid-morning she had washed her household’s laundry (and her mother’s), tidied the house, made a run to the grocery store and completed her daily paperwork, including monitoring her mother’s bank statements, shopping purchases, utility bills, etc. Duffie is required to account for all her mother’s expenditures to a court-appointed public trustee.
On the plus side of the ledger, however, Duffie’s diary does offer a glimpse of the simple pleasures that informal home caregiving can bring. Each day when she arrives at her mother’s house to pick up Monica and her 91-year-old sister, Marg, the three often just browse a map of Toronto or Ontario to decide the day’s activity.
One day they drove to Lake Simcoe to watch the boats and swimmers. Other days they just wandered through Toronto’s Sunnybrook Park “to talk to the horses,” or found themselves in the front row at the Eaton Centre for an appearance by Mr. Bean. During the winter they visited the Royal Ontario Museum, went “mallwalking” at a neighbourhood shopping centre or drove down to Lake Ontario, where they sat “with the sun pouring into the car — Mom in the front, Aunt Marg in the back. They sipped hot chocolate and pretended they were in Florida.” At the CARP Forum on Home Care, Joanne Duffie listened attentively and emotionally to the morning panel. She heard much of her own experience reflected in the presentations of two other informal caregivers: Anthony Firth recounted how ill-prepared he had been to participate in his wife’s battle with cancer; Judy Cutler recalled that being a caregiver to her mother “just seemed natural,” although she admitted the hardest part of her own healing process was re-entering society after her mother’s death from cancer.
In fact, ReEntry – After Caregiving was chosen as a discussion topic at one of the CARP forum’s breakout sessions. Among the issues raised was the need for caregivers to restore normalcy in their lives, to keep their “personhood” or identity intact through the experience, to find re-entry support, and to be seen as “a brain trust of experience” to a community upon re-entry. Duffie suggested several ways she had maintained a balance during her caregiving: keeping some job-related work in her life, getting away to a show occasionally, visiting on the phone and attending religious services with her best friend once a week.
For Rex Dawes, normalcy would have meant returning to the family cottage in Muskoka, as he had for more than 40 summers, or maintaining his rock garden at home in East York. However, a series of operations on his wife to deal with ovarian cancer, a hernia and swollen discs in her back – had wiped out these leisure pursuits almost completely.
At 74, Dawes is committed to giving Dorothy, his 78-year-old wife, his undivided attention. Rising with her each morning at 6 a.m., preparing her breakfast, washing dishes and laundry, making sure she takes her medication — eight or 10 pills a day — and cleaning up when she fails to make it to the bathroom in time. With the exception of visits from a home care worker to bathe his wife twice a week and the Meals on Wheels delivery people, Dawes is on full-time duty.
“You’re like a zombie sometimes,” he admits. “You just do what’s necessary. You don’t think. Of course, I couldn’t do it well all the time unless my wife and I had always gotten along. But, frankly, you suffer in a way, because your freedom is gone.”
A model of resourcefulness (he was a welder and handyman by trade), Dawes found ways to keep his wife mobile even though she would be housebound. He got a hospital-type bed, a chair with a joystick and movable back and a walker so she could get to the bathroom on her own.
But the greatest obstacle of all was the one he least expected. Despite it being a one-floor bungalow, the three steps at the front door of the house “seemed like Mt. Everest,” because even a wheelchair ride up the steps was excruciating for Dorothy’s back and legs. That’s when Dawes had a small electric lift installed beside the front steps. That meant that, rain or shine, the couple could get out of the house to doctors’ appointments, to the local mall to shop or when their son Brian came Tuesdays to take them to dinner.
“I would generally see Mom and Dad once a week,” explains son Brian. “But now it’s a very structured thing. I’m always here Tuesdays and Thursdays… or sometimes I’ll come just to give Dad a break.”
Brian Dawes is 45 and readily shares the load with his younger sister Arlene, who spells off her father on the weekends. The family surveillance system, however, isn’t air tight. One day last winter, Brian Dawes got a call that his father had suffered a heart attack. He raced to his parents’ home to find his father gasping for air. He immediately realized it wasn’t a heart attack but rather his father’s hiatus hernia that had him choking.
Minutes later, Rex Dawes was in hospital which only made things worse. “I could see Dad starting to worry,” recalls Brian Dawes. “I could see he was thinking, ‘I gotta get out of here.’ He was under real pressure to get home to take care of Mom… Naturally, I worry about him too… This summer I’ll take my vacation on alternate weeks to my sister so we can accommodate the folks.”
The Dawes caregivers — Rex, Brian and Arlene — are hard pressed to call what they do as stressful or even inconvenient. Like Joanne Duffie taking her mother for a driving excursion, or Bob Crowley travelling to Florida to help bring his parents home at the end of the winter, “it’s just family doing what’s natural.” On the other hand, informal caregivers all realize they can’t do it alone. The relief that Rex Dawes gets from the twice-weekly visits of the home care worker is priceless. The 9 p.m. to 9 a.m. overnight professional care for Monica Barreca is essential to her daughter Joanne’s sanity. And when tending his parents in their final weeks was darkest for Bob Crowley, the support offered by SPRINT (Senior Peoples’ Resources in North Toronto) and Alzheimer Care Inc. was more comforting than a doctor’s optimistic prognosis.
“Respite,” Federal Health Minister Alan Rock pointed out at the CARP Forum, “is essential to home and community care.” In a larger sense, the entire phenomenon of informal home caregiving is in need of immediate and long-term relief. As the CARP Forum recommendations indicate, more attention by government is needed. More funding is essential. Higher standards in home care training, admin-istration and on-site delivery must be set and regulated. Greater integration with the rest of the healthcare delivery system is vital. In short, home caregiving — like so much of Canada’s beleaguered health delivery system — needs intensive care. Or else, as the CARP study says: caregivers will remain “silent victims in a silent system.”