The hidden caregivers
As they care for family members with complex needs, they are the essential workers whose responsibilities have been made more onerous by the pandemic
Carmen Aguilera is a light sleeper.
At night, in the room she shares with her two daughters, she is always alert. When 11-year-old Amy has a seizure, her eyes fly open and she fumbles for her daughter’s medication.
Many nights, she doesn’t sleep at all.
In the early days of the COVID-19 pandemic, Aguilera and her husband Jocsan Diaz asked their daughter’s caregiver to stop coming to their home in Port Coquitlam. The risk of someone inadvertently transmitting the virus to Amy, who has cerebral palsy and a weakened immune system, was too great.
Since then, Amy’s care has fallen to her parents alone.
“Someone has to be there at all times,” said Aguilera. “You can’t cook, you can’t shower, you can’t go to the next room for a moment.”
The family qualifies for 12 hours of home care each week, giving Aguilera time to get groceries, run errands and maybe take a little time for herself. Now, “there is no time,” a situation that’s unlikely to change until the pandemic ends.
Aguilera injured her left shoulder a long time ago lifting Amy. Lately, her right shoulder has been aching, too.
“Thank God for my husband,” she said. “He works all day, but when he is done, I can have a shower.”
Barb MacLean calls B.C.’s family caregivers the “front line workers behind closed doors.” Because they aren’t paid as they take care of their loved ones, it is difficult to immediately understand the toll the pandemic is taking on them, said the executive director of Family Caregivers of B.C.
UNPAID CAREGIVERS
An estimated one million people in B.C. provide unpaid care for adult family members. That number does not include parents who care for children with complex medical needs.
Unpaid caregivers provide about three-quarters of the care for seniors receiving care at home in Canada. Replacing the care with paid caregivers would cost more than $25 billion a year in Canada, $3.5 billion in B.C., according to the Health Council of Canada.
Burnout is already a serious issue, with 31 per cent of B.C. caregivers reporting distress in a 2017 survey by the Office of the Seniors Advocate, the second-highest rate in Canada.
“We know many caregivers are exhausted and ready to break,” said MacLean. “As health authorities cut back to essential services during the pandemic, people are getting even closer to that line. We need to find them and help them before they break.”
In April, the B.C. government announced a $500,000 grant to Family Caregivers of B.C. to support people who are caring for elderly family members or friends.
The not-for-profit organization runs a caregiver helpline and provides education, resources, counselling and assistance navigating the health care system.
“Many B.C. seniors count on their spouses, children and close friends to help them stay at home and manage chronic conditions,” B.C. Health Minister Adrian Dix said at a press conference. “The circumstances of COVID-19 have added weight and worry to the task.”
Maclean describes the people who perform these tasks as “the invisible caregivers,” adding that they are also vulnerable.
“If caregivers aren’t getting support, one sick person can easily become two people,” she said. “We know that caregivers are at a higher risk of illness themselves.”
While each caregiver’s situation is unique, one of the keys to remaining healthy is to have some time away from caregiving, said B.C.’s seniors advocate, Isobel Mackenzie.
But with adult day programs cancelled due to the ban on large gatherings, time away “may not be possible anymore,” she said. “We need to be thinking about what else we can do.”
MacKenzie said many caregivers who are seniors themselves may be able to handle a few weeks, or months, without a break, but the “cumulative effect” remains to be seen.
“I don’t think we’ll see the full effect of this for some time. In the future, we may see it manifesting itself with more people needing to go into care. Perhaps they would have been able to stay at home longer if there had been support.”
‘AN INCREDIBLE LOAD TO BEAR’
For families caring for children with complex disabilities, the pandemic presents similar challenges, said Brenda Lenahan, the founder of a Facebook group for B.C. parents of “medically complex kids.”
Financial challenges that existed before COVID-19 have been magnified, she said.
Many families rely on one income to make ends meet, with one parent staying at home to provide care. The costs of medical equipment, such as wheelchairs, often exceed government funding, while accessible vehicles and homes cost much more.
On top of financial concerns, many families have extra anxiety about their children’s health during the pandemic.
“Our kids are complex in a way that makes them vulnerable,” said Lenahan. “Many of us started isolating early, before the government put orders in place, and many will stay isolated for longer.”
She said a reduction in respite services affects parents physically — “we have less opportunities for fitness, a bike ride (or) a run” — as well as mentally. “It’s an incredible load to bear. Some of us are tasked with keeping our kids alive. Add to that the pressure of keeping our kids safe from COVID-19, and it’s very, very hard.”
Some families have chosen to cancel their home care for safety reasons, while others may have caregivers who are unable or unwilling to make home visits during the pandemic, said Pam Horton, chair of the board of directors for Disability Alliance B.C.
“The impact on the person requiring the care is significant,” she said. “If a person lives alone and can’t get out of bed themselves, it’s very difficult.”
Horton said she is aware of a woman with a disability who has had to ask her mother to come to her home during the night because her usual caregiver is unable to do the overnight shift.
“I don’t see the easing of restrictions changing this until such a time that we can fully guarantee that it is safe,” she said.
Horton has been encouraging people to write letters to the government “to paint the picture” and ask for more support for people with disabilities, including more personal protective equipment for caregivers.
Increased awareness in the broader community could also help caregivers get through the pandemic, said
MacLean. “We need to be a caregiver-aware culture more than ever.”
That could mean giving support in non-medical ways, such as mowing a neighbour’s lawn, offering to get groceries or bringing a meal.
“You might live next door to a caregiver and not know it,” she said. “If there’s something we can take from this time, it might be more of a willingness to ask for help and a willingness to give help.”
Family Caregivers of B.C. tries to help people build “networks of support,” so that they are receiving both formal and informal help, such as routine assistance with tasks and spontaneous gestures that help them feel connected.
“Simple things can make a difference,” said MacLean. “A bouquet of flowers, a phone call, someone saying ‘Count on me to get you groceries every Tuesday.’ Even the small gestures can create a bright spot in someone’s day, which allows them to keep going.”
A WAY TO FEEL CONNECTED
For Ted VanAsseldonk, the bright spot is nature.
The retired firefighter became the primary caregiver for his wife, Helga, after she had a life-altering stroke in 2015.
Realizing that to be a successful caregiver, he needed some time for himself, VanAsseldonk
began hiking early in the morning, before his wife was awake. He also arranged for his daughters to help him for several hours each week and started leading group hikes in the mountains near his house in Abbotsford.
While the pandemic has forced him to hit pause on the group outings, VanAsseldonk is still hiking.
“Something as simple as a walk gives me something to look forward to,” he said. “It’s a chance to leave my cares behind for a while. Without the exercise, I might become a little depressed.”
Occasionally, VanAsseldonk will encounter another person on the trail. A moment of conversation, at a safe distance, helps him feel connected to his community.
“I get home, and I’m ready for the day,” he said.
“It’s not easy, but I’m doing all right.”
Even the small gestures can create a bright spot in someone’s day.” Barb MacLean