National Caregivers Day: You’re Not Alone in Feeling Alone
The first Tuesday in April is ‘National Caregivers Day’ in Canada. As a patient and/or care partner (or caregiver) you can often feel alone. Weirdly, the stats show us you’re not alone in feeling alone.The stats on 'caregiving' tell only a small fraction of our stories. How do we see and tell the real healthcare story that lives behind the stats? Click To Tweet
What is a ‘Family Caregiver’?
A ‘family caregiver’ provides care to a family member or friend who has a chronic health condition, a disability or increased needs due to aging. (Please note: I prefer to use ‘care partner‘. We are partnering with our friend/family member as well as the healthcare team.)
Care partners are estimated to be 25% or 8.1 million Canadians 15 and older .
Important to Note: In our healthcare system, patients and care partners navigate as well as advocate for access to care and support. Many Canadians do this work for themselves because they don’t have a family member or friend to help on a regular basis, if at all.
How Much Time Do Care Partners Work?
The time people spend in care partnering varies depending on their own situation. StatsCan defines 3 different categories of care partner :
- Less than 10 hours/week (64% – or 5.2 million Canadians)
- 10 – 19 hours/week (15% – or 1.2 million Canadians) and
- 20 hours or more per week (21% – or 1.7 million Canadians)
That’s 36% of care partners (2.9 million Canadians) carrying out unpaid care partnering duties taking up 10 or more hours per week.
Being a care partner can interfere with person’s ability to hold down ‘regular’ work. There are very real financial implications for care partners in Canada.
In our family, Tony had to attend an increasing number of healthcare appointments. He needed me to drive, take notes and organize appointments and meds. We often spent a full day travelling to and from appointments because we lived outside a major city. My capacity to work was impacted at a time when expenses were rising. We were literally confronted with the question: Your money or your life?
You’re Not Alone in Feeling Alone
As a person’s care requirements increase, and financial capacity decreases it’s no surprise when social isolation starts to become an issue.
For us, social isolation increased as Tony’s health declined. This meant that in addition to what is called ‘treatment burden‘ of keeping up with appointments, medications, household expenses and treatment plans we became more and more unable to keep up with socializing. We found ourselves often having to cancel plans. Then we found ourselves turning down invitations as our energies went into healthcare activities. And then invitations dwindled.
We just couldn’t participate in social events or even work. Our world got smaller.
I truly hope that one of the lessons we’re learning from COVID is that the work of patients and care partners is massive and can easily become isolating. Patients and their care partners can start to feel alone as they find themselves doing more work to keep up with the ‘new work‘ and ‘treatment burden’ of a healthcare system that was never designed for complex and chronic care.
Who Supports Care Partners?
Care partnering doesn’t just happen during evenings and weekends. Paid work helps pay the bills and it can provide social connection. And depending on your situation it can become difficult to maintain.
- According to CARP, the care partners who are looking after seniors alone save the Canadian economy over 24 BILLION dollars annually . This doesn’t count care partners for children or family/friends under the age of 65.
- 70% of all care partners (5.7 million Canadians) reported that they had some sort of support/assistance .
- Financial support for care partners comes from family and friends (14%) followed by government tax credits (8%) and government financial assistance (6%) . Please sit with this a minute. Recall that 21% of care partners (1.7 million Canadians) work 20 or more hours per week and 6% receive government financial assistance.
Patients and care partners are shouldering a significant amount of out-of-hospital work. We are primarily supported not by government but by friends and family. If we have friends and family in a position to provide support.
Approximately 1.9 million Canadian care partners report having ‘unmet support needs’. This isn’t too surprising given the statistics so far.
Patients and care partners scramble to keep up with care, paid work and social connections due to a lack of financial and institutional support.
And so we become increasingly isolated. Our increasing social isolation was too often met not with understanding and support, but with admonishments about ‘self-care’ and whispers about ‘mental health’. And that’s when the response was respectful.
The issues that isolated us can’t be addressed with pamphlets and webinars about self care and mental health. They are addressed by changes in healthcare and government policy.
We need to tell our real stories.
You’re Really Not Alone
The statistics tell us we’re not alone. To recap:
- 8.1 million of us are care partners
- 2.9 million of us provide care to friends or family members 20 hours per week or more
- 1.9 million of us report having unmet needs
- 1.3 million of us need more financial support from government