burnout and isolation: unpaid caregivers are the hidden victims of the pandemic

until the pandemic began, carol hicks didn’t let anything — not even her husband’s dementia — slow her down.the 73-year-old ottawa woman had a busy social life and she often brought her husband alan along. two days a week, he attended programs run by ottawa west community support. the activities were good for both of them.but the covid-19 pandemic brought almost everything to a halt. and now, like many caregivers, hicks is feeling stressed and is dreading the coming winter. she is also concerned that her husband’s condition is worsening.“the summer is good, we can sit outside. but it is going to be a long winter. it is going to be bad.”people like hicks — one of thousands of unpaid caregivers whose work supports the health system across canada — are the hidden victims of the pandemic.on one hand, the elderly who live at home have fared much better during the pandemic than people of similar age in long-term care or nursing homes. on the other hand, isolation and burnout are growing problems for both caregivers and the people they care for at home.amid the focus on outbreaks and deaths in long-term care homes, less attention has been paid to the impact of the covid-19 pandemic on the elderly and disabled living in their homes and their caregivers.that is changing.

the canadian institute for health information recently released a report that found more than one-third of unpaid caregivers in canada were experiencing distress, “which can include feelings of anger or depression, or the inability to continue with caring activities.”the analysis found that the caregivers in distress are providing an average of 38 hours a week of care, about double the amount of those who do not report distress.the findings, said tracy johnson, director of health system analysis and emerging issues at cihi, “may signal a need for more effective and appropriate home care services and community supports.”those services — including more respite care, meal delivery and more home care — could make it easier for people who wish to stay at home to be properly cared for, said johnson. as the pandemic drags on, better services could make a crucial difference.in ottawa, community support services are trying to offer that additional support, but the restrictions resulting from the pandemic are making it more difficult.jennifer lalonde, executive director of ottawa west community support and chair of the champlain community support network said she is concerned about caregiver distress and isolation during the pandemic.“that is what has me most concerned.”when the pandemic began, many caregivers hunkered at home with their loved ones, in part to protect them from covid-19, and in part because many programs that had supported them were cancelled.lalonde said the toll of that isolation is beginning to show.“you can do anything for a little while. but peoples’ resilience is beginning to wane.”lalonde is trying to get the message out that caregivers at home don’t have to do it alone, even with the limitations of the pandemic.ottawa west and other support services offer remote programs and in-person respite for the caregivers. there are also plans to begin reopening day programs.“what we are hearing is we need these supports to come back and we are doing what we can to bring them back as much as we can. it is not going to be the same but i would love for caregivers to hear and to see that there are supports out there.”lalonde said social contact is critically important, for caregivers and those they are caring for.“the more you isolate, the harder it is to manage.”hicks believes she is lucky to have the help she gets. she currently has someone coming into the house for five hours, two days a week, to look after her husband who can’t be left alone for more than a few minutes.

“i thought i was ok until they offered me another five hours of respite care to come in and i realized i needed it. you just feel kind of trapped.”alan also receives phone calls from ottawa west community support twice a week. they talk to him and sometimes play bingo, she said.“it really makes a difference for him.”even so, she worries about what the fall and winter will bring.lalonde said her organization and others that provide support for seniors with dementia at home want their caregivers to know they are not alone and will have help coping.“we are absolutely hearing from caregivers that they are tired and are finding this extremely difficult and very lonely.”people looking for community care services can dial 211 or contact caredove.com.epayne@postmedia.com