The Pandemic Is Still Taking a Toll on Caregivers

Caregivers play a vitally important role in the lives of millions of Canadian cancer patients. Despite the benefits they provide, however, the informal, unpaid work that caregivers do often costs them a great deal of their time, money, and even mental and physical health. The COVID-19 pandemic has significantly increased this burden on caregivers. The Canadian Cancer Survivor Network’s fourth survey on the impact of the pandemic on cancer patients and caregivers demonstrates this: it shows that cancer caregivers are under stress because of loosened public health restrictions, and that they are more anxious than ever about protecting the person they care for from COVID-19.

“With my husband being immunocompromised, it is even more dangerous to leave the house. We have been shut in for over two years, and it is having an effect on our mental well being. Lifting the restrictions means we need to stay home even more.”

— A caregiver for a squamous cell carcinoma patient in British Columbia

Fear of COVID-19 was the overriding concern for caregivers in CCSN’s fourth survey: 38 per cent of caregivers said this was their greatest fear at this point in the pandemic. No other concern was mentioned nearly so often. By contrast, a smaller proportion of patients – 27 per cent – said this was their greatest concern. One reason for this difference may be that caregivers were more likely to be caring for more vulnerable patients. More than two in five caregivers (41 per cent) were caring for immunocompromised patients, while 26 per cent of patients said they were immunocompromised.

For some caregivers, ordinary errands such as going to the grocery store invoke a palpable fear of infecting their loved one with COVID-19. “I am the one who shops and goes out for prescriptions, and while I am wearing a mask, so many others aren’t,” said a caregiver for a immunocompromised squamous cell carcinoma patient in British Columbia. “What if I am infected and can’t care for my husband? What if I transmit the virus to him?”

The logical response to these legitimate anxieties is to go out as little as possible. Explaining how they would react to the lifting of public health restrictions, a caregiver for a lung cancer patient in Manitoba said: “We will follow the guidelines that we follow during a massive outbreak – social distancing; masks; no shopping in stores, just ordering in; same thing with pharmacies … Basically, what I’m saying is, we will stay reclusive.” More than half of the caregivers surveyed (53 per cent) said they planned to avoid going to stores; by contrast, only 32 per cent of patients mentioned taking this precaution.

When caregivers have to stay home to protect themselves and their loved ones, it adds to the toll on their health – even as others celebrate freedom from restrictions. “We have been shut in for over two years, and it is having an effect on our mental well being,” continued the British Columbia caregiver. “Lifting the restrictions means we need to stay home even more.” It’s no wonder that 71 per cent of caregivers in CCSN’s fourth survey said that the pandemic was adversely affecting their general well-being, and 70 per cent said it was negatively affecting their mental health.

Because of the informal nature of unpaid caregiving, the struggles caregivers face are often overlooked. This was true before the pandemic, and it is even more true during it. Many cancer caregivers, along with those they care for, have become more isolated in order to stay safe, which impacts their mental health and makes it more difficult to get support. Although their work is often invisible, caregivers deserve recognition and support, just as paid healthcare workers do, for their essential role in the care of those they love.