Home care and live-in caregivers


But in terms of help in the home, that establishment doesn’t have any budget right now; they’re not giving anything. So at home, there’s no caregiver, there’s no home support, there’s no nothing. So, it’s either me, or you pay. And to give you a concrete example of that is we’re still on a waiting list for some of those things and this week there was a phone call from someone from that establishment, who called my mom to say that there was a space for help with a shower once a week. And my mom said, “No, no. My daughter does that for me.” And I just wanted to scream because it was, “Okay, maybe you don’t feel that way, but think about me. That’s one less thing to have to do, and it could be such a nice thing to have an extra shower and make your arthritis and your back feel relaxed.“ So this week, that’s where we’re at—this drama over the shower.

So that really is frustrating because she doesn’t see herself as needing help, and, I don’t think, is really aware of my fatigue. So I took the risk this week in talking about that phone call with her after and saying, “It would be a good idea to say yes, because you could be sick, you could be sicker. You’re walking now, but it might change. It’s not a good idea to say no, and then that request gets cancelled and you have nothing.” I said […], “I will help you with your showers, but when I come home from work, I’m tired.” I am tired. And she did not react to that very well. And that was very hurtful because I feel like hired help. Sometimes I feel like unpaid hired help. And I do it willingly. I’m happy to help her and I’m happy to have her around, but I don’t see having people help as a negative thing and it will be more and more necessary as her medical situation changes, and I’m really terrified of having to deal with that. Not so much that those things will be necessary, but her reaction to it—it’s like walking on broken eggshells with her, and deep down, it makes me very angry, because I feel quite used and neglected.

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