Caregiving

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"But we can't think about ourselves," she said.

I had asked her to talk about her life as a family caregiver. But instead she wrote about others. When I asked her about this, about describing her own experience, again she used the word "we". She couldn't explain why.

Finding a caregiver through various women's health organizations was a chore in itself, since most just don't have the time to be active in the community. We didn't know where to look for them, because they are often at home, isolated from the community.

When I found some, I discovered that caregivers generally don't have the energy to talk about, let alone advocate for, themselves. Each woman I tracked down seemed unable to use the word "I".

They speak of the needs of the person they are caring for, and about other caregivers generally, but they never said, "I need this," or "This is what it is like for me".

And no wonder. The person they are caring for might read what they had written, confirming that indeed it is true that they are a burden to their caregiver. Friends might disappear because they "don't want to hear about it anymore". And policy-makers could point out that these women should "get involved" by helping to shape a national home care program, rather than complaining about the lack of support for their work.

But the truth is these women can't get involved. They are overworked and often alone. In many cases they are caring for someone who doesn't want to be cared for, and whose anger and frustration is vented on the closest person - the caregiver.

This is not to say that caregiving is all bad. It is difficult, and families that work through the difficulties are proud of their strengths. They should be proud. And so should the women that can't put themselves first because of their situation.

In this issue Norma Buchan describes her life (and even says "I" a couple times) caring for her husband. Karen Mulgrew gives some tips for today's caregivers on looking after an aging family member. Lesley Poirier examines caregiving as "women's work". And, I talk with Paula Keirstead about home care and women with disabilities.

The staff at the CWHN office expect the role of caregiver to become ours. We have watched our own sisters, mothers (yes, Norma is Laura's mom), and grandmothers fill that role before us. It's something we should all be thinking about as our health care system erodes and women begin taking on more and more of the responsibility for keeping their loved ones well.

Rachel Thompson
Network Editor

CWHN Coordinating Committee: Robin Barnett, Laura Fitzpatrick, Marsha Forrest, Vuyiswa Keyi-Ayema, Carla Marcelis, Vera Morin, Monica Riutort, Anne Rochon-Ford, Kamal Sehgal, Sari Tudiver. Executive Coordinator: Madeline Boscoe.