I'm not sure that I can give my dad the care he needs.

Post Reply New Topic

My dad has been in a nursing home for some time now. He just turned 75, and just started taking kidney dialysis three days a week,. He will do dialysis for the rest of his life. But that's only part of the story. Earlier today, my half-sister (with whom I have a fractured relationship) said that I should become an in-home health care worker for my dad, in the event that he comes home. Well, not so much "said" as "shoved down my throat". We don't get along at all. She bosses me around a lot, even though she lives hundreds of miles away. (She visits quite often, even when it's not related to my parents' health. She once threatened to beat me up over the phone after I posted my frustrations about her on Facebook. She has never given a flying fig what I think.)

While I want my dad to get the help he needs in his twilight years, I don't think that I'm the person to help him around the clock. I'm 31 years old and I live at home with my mom, who has her own health problems to be sure. But I'm going through my own stuff as well. I'm a self-diagnosed Aspie and I was also diagnosed a few months ago with social anxiety. My family doesn't understand what it's like to have Asperger's or social anxiety. They automatically assume that I'm lazy and can't be trusted to make my own choices. My half-sister called me a burden and a freeloader, which I resent. I actually hate living at home, and have hated it for a long time. I used to live in San Francisco (now I live in Solano County, and have done so for over nine years), and I moved away under protest. (This highlights another family problem: they've NEVER taken my thoughts and concerns into account for ANYTHING.) I told my sister that I'd think about it, but she said that there was nothing to think about. Later, when she was out, I called the Institute on Aging's Friendship Line and talked to someone, who said that I had a perfect right to "think about it". I also told her about having Asperger's and social anxiety.

I've been struggling for years to get a job, and now this happens. (In addition to my health problems, I also have an AA degree that's practically worthless these days.) Yes, if successful, I will get money from the government. But I've been putting my life on hold for far too long, and I just cannot keep putting my life on hold for anyone, not even my parents. It's not fair to them, and it's not fair to me. It does not mean that I don't love them; for their sake, I just can't do it. Being a home care worker requires not just physical skills but mental skills as well. I would not make an appropriate health care worker at all, not even after months of training. I love my dad too much to risk it. My dad needs someone who can give the absolute best of himself or herself to him in his twilight years. You might as well hire a convicted drunk driver to work at the DMV. I'm just so frustrated.

What do you guys think? Have you ever been in a position where you had to take care of an ailing parent, and yet your Asperger's/autism impeded you? Any success stories? Words of encouragement?

This is absolutely a legitimate concern for you. I don't think AS really has that much to do with it, but that doesn't particularly matter because you, as a human being, shouldn't be expected to take on the sole responsibility of caring for your father. Why do you think even NT caretakers get burned out, isolated, depressed? No--you shouldn't have to do this alone.

Your father may benefit from hiring an in-home aide. Even an hour a day could work wonders. You wouldn't have to do the heavy lifting of the caretaking and ideally your father would get to be the employer rather than the patient.

Your sister is being a b***h. I don't know if she's normally like that or if she just feels like she has to force you into this because "you're not doing anything anyway" and she's desperate to keep your dad at home, out of nursing homes, and being treated with respect by people who respect him. Still, she's being unreasonable. There have to be alternatives that don't involve forcing you into the position of full-time caretaker.