Society and caregiving

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Transcript

Okay so let me speak a bit about the isolation of the caregiver, okay. So, my first incident was when my children were very young and my husband stopped driving and I came to pick him up at the local Y. I had two children in car seats in the backseat that had fallen asleep, I was sitting in the car and my husband came out and started to walk down the stairs to the car. And I knew instinctively, it was very early in the illness, but something told me, “Don’t help him; he needs to be as independent as he can.” I saw that it wasn’t a safety issue, so I let him handle the stairs but I found it so difficult that I held onto the steering wheel so tight that I didn’t even realize until later that my palms were bleeding, that my nails had cut into my palms. And as I was watching him in the rear-view mirror to make sure he was okay, a friend rounded the corner, looked at me in the car, looked at my husband on the stairs, walked over to the car and said, “You bitch,” and ran to help him. And that was the beginning of my awareness of exactly how the caregiver is perceived when they don’t do what is considered normative. But in a chronic illness, you cannot do what’s normative. It’s not a crisis illness that’s going to go away in 6 months; this is the rest of your life and this is the rest of your family’s life, and you have to handle it in a way that makes sense for your family. And if you expect your relatives who are not around, your friends or strangers to understand, you’re going to be very, very disappointed. Most people have no idea what’s involved.

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