The approaching caregiving crisis
One-time U.S. first lady Rosalynn Carter once said there are four kinds of people: Those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers. Sage explores the issue.
Jonathan Knaul put his career as a test pilot on hold to care for his mother. He’s written a book called Final Approach: A Test Pilot’s Story of Caring for Loved Ones about the experience. Photo: Dawn Bowery
Putting his career as a test pilot on hold to care for his mother offered many life lessons. But Jonathan Knaul realized he learned many practical ones as well.
“People just network with friends and try to keep things together as they go along,” says Knaul, a federal retiree from Ottawa who shares his experiences in his book, Final Approach: A Test Pilot’s Story of Caring for Loved Ones. The book doubles as something of a tribute to his parents’ remarkable lives: his father a Polish Jew and his mother, who was a teenager growing up in England during the Second World War. The role of caregiving, he says, is a challenging one and can become more difficult with time. Final Approach, he adds, is a way for him to give back to the community where he found support, while also sharing something about his family.
The reality is that many of us will require some type of care at the same time that we’re also likely to be in a position where we’ll have to provide it. Former first lady Rosalynn Carter told the United States’ Senate Special Committee on Aging in 2011 that there are four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.
That’s something that Alison van Schie often thought about as a social worker in Comox, B.C., working with the elderly in a long-term care facility and later as a consultant. She saw very little support available to those trying to support a loved one. She would see spouses coming in to visit and she would feel helpless as there was nothing she could do for them. “That just broke my heart,” she says.
A widening gap
There is concern that the gap in caregiving resources will widen further with Canada’s aging society. Statistics Canada reported in 2020 that one in four Canadians are caregivers, most of whom are unpaid, and half of all Canadians are expected, at some point in their lives, to become caregivers. Some are describing this as the start of a crisis as the number of Canadians requiring care is expected to double in the next 30 years.
A large proportion of current caregivers are older Canadians. Through its surveys, the Canadian Centre for Caregiving Excellence has found that one in five caregivers is older than 65 years old, including 13 per cent who are aged 65 to 74 and five per cent are over 75.
“This is the ticking timebomb issue just below the surface,” says James Janeiro, director of policy and government relations for the Canadian Centre for Caregiving Excellence, a program of the Azrieli Foundation. “Our mission is to make Canada the best place in the world to give and receive care [both paid and unpaid.] We lack sufficient supports from government and employers and society at large to be able to give the care we’re going to give anyway, [at least not] without sacrificing our livelihood, our mental health, our physical health or our own stability.”
Those living in rural and remote communities are further challenged with more limited access to supports, respite care and home care services compared to urban areas, he adds, pointing to the organization’s report, “Caring in Canada.” It found that caregivers in rural areas were less likely to access common forms of supports, including home modifications, health-care provider assessments, transportation services and respite care.
Some are describing this as the start of a crisis as the number of Canadians requiring care is expected to double in the next 30 years.
Apart from the sheer need of requiring loved ones to step up, there are also complications. What happens when much-needed caregivers become ill and require care themselves? Then there are those who are trying to balance work with caregiving responsibilities as well as related costs.
Permission to ask for help
Van Schie developed a podcast to share ideas, resources and the experiences of other caregivers during the COVID-19 pandemic, when many were feeling isolated. Her biggest takeaway from years of working with seniors and caregivers is to be prepared to suddenly find yourself serving as a caregiver. When that happens, van Schie advises caregivers to remind themselves they are not alone, a message that test pilot Knaul shares as well. Caregivers need to give themselves permission to ask for help and, when it’s available, to accept it.
van Schie suggests that it’s always a good idea to know what is going on in your community and what help is available. Often the biggest obstacle to overcome is knowing where to turn to for help. The information can be found at seniors’ fairs, through other caregivers, in the news and on social media.
Ottawa Federal Retirees member Shelagh Tuddenham has been involved in a community program to support primary caregivers and those trying to help them.
Tuddenham’s concern for caregivers comes from experience. In 2009, she went straight from 35 years in the federal public service to supporting her ill mother until her death in 2012. Meanwhile, her husband was diagnosed with cancer and later suffered from a debilitating stroke, which limits his abilities. In addition to learning some practical approaches in the workshops and other courses she has taken, Tuddenham has also learned to be OK with the situation and how to take time to pursue her own interests.
Prioritize yourself
Knaul stresses that caregivers must prioritize themselves, as Tuddenham learned. The test pilot points to the in-flight safety briefing that instructs passengers to put on their own oxygen mask before helping others with their masks. You can’t take care of loved ones if you don’t take care of yourself, he reasons.
A key piece of knowledge Knaul learned in his caregiving journey was getting ahead of the situation by having the loved one establish a clear power of attorney when they’re of sound mind. That lays out who will have the authority to make life decisions. He also made sure to have the necessary discussions with his sister at every turn.
One of his greater finds was free palliative care in Toronto through the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital. He was able to access a caring support network and end-of-life, in-home care with doctors available 24 hours a day, every day.
More work to be done
The people now caring for others are making do with what they can get. And often that involves the support of other people and organizations and not relying entirely on government agencies. But Janeiro says that simply isn’t enough. He points to the five buckets the 3.5-year-old organization identified through consultations and study as the framework for a plan. That includes aiding and supporting programs and services for caregivers; supporting caregivers in work and education; financial supports for care recipients; building a sustainable care provider workforce and capitalizing on government leadership.
Janeiro stresses the importance of health-care and social-care investment. While the federal government has committed to a caregiving strategy, the job now at hand is to implement
a strategy. “We know that better is possible… we all have a responsibility to help those people… the good news is we know how,” Janeiro says.