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Practical Insights for Busy Caregivers

Insights from family caregivers crucial to making system more responsive to their needs

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November 26, 2018, by The Canadian Press, Sheryl Ubelacker and CaregiverExchange.ca

Family caregivers are often invisible in the health-care system, with their contributions going unrecognized and unrewarded. This fact was brought into sharper focus by a recent survey of 800 Ontario caregivers. 

"Family caregivers provide the vast majority of care that happens in between appointments with physicians or in between hospital stays or different interactions with the health-care system," said Christa Haanstra of the Change Foundation, the independent health policy think-tank that commissioned the survey.

"We really think about them as the glue that keeps the health-care system together."

Survey results

The online survey, conducted in May by the polling firm Pollara Strategic Insights, found that caregivers overall appreciated the time spent with their loved ones and believed they were improving their lives.

But 61 per cent admitted they took on the role because they believed they had no choice, with many at times feeling trapped, helpless, frustrated and overwhelmed.

The survey found 36 per cent of caregivers felt depressed and 33 per cent were resentful of their role, with almost half overall saying caregiving had negatively affected their ability to have personal time, engage in travel or enjoy a social life.

One-third said they had experienced financial costs due to caregiving, including out-of-pocket expenses, time off work and turning down career opportunities. Eight per cent lost their jobs due to caregiving responsibilities.

Additional results can be found at Spotlight on Ontario’s Caregivers, along with family caregiver stories that lend human faces to the numbers.

Enlisting caregivers to find solutions

The Change Foundation has created an online advisory panel made up of family caregivers which will dig deeper into the findings and reflect on potential solutions. 

Although the panel is already up and running, new members are welcome. The online format is flexible, allowing members to log on any time, day or night. They’re free to participate however frequently their caregiving responsibilities allow.
 

One caregiver’s struggles

Here’s how one woman, who has cared for her husband since he had a massive stroke 2012, described the different ways caregiving has impacted her life:

When my husband first came home from the hospital, I thought he would recover. They didn’t say he would be disabled for the rest of his life, and I wasn’t prepared to be a full-time caregiver.

I was absent a lot during my last four years of work, and I really regret that because I loved my job. Also, I always thought that we would be able to travel once we retired, but we aren’t able to do that now.

My health has also been adversely affected. For a while I wasn’t sure if my husband would survive. But now I think that he is healthier than I am. We see so many specialists for him that, when it comes to my own health, I don’t want to go to the doctor anymore. 

Being a caregiver, has also impacted my mental health. Counsellors give advice, but they don’t always see the whole story. They recommend that I take a break, but they don’t understand that it’s not as easy as it sounds.
 

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