It actually goes back to about 1999, when my mom got sick. And I’m on disability. Not just because I was on disability, but because being a person with HIV sort of gives you an unofficial training[?] for social work. I began to be a caregiver for her. That had a lot to do with managing appointments, health system navigation, keeping with medicine and adherence. I didn’t have as large a role because my dad was still alive and had primary responsibility. But I did do a lot of those things, as well as doing the bookkeeping.
I guess about 2006/2007—my mom passed away in 2000—my dad had a series of strokes that involved a series of hospitalizations and rehabs, and I took on a similar role. The difference being at this point he didn’t have a spouse to provide primary support. He had a really remarkable recovery for his age, but then began to show signs and symptoms of dementia, which eventually progressed. So I played a similar role with him in terms of managing.
I have two brothers, and they share the work, but I take responsibility for helping make sure he gets to appointments, gets and takes his medication, grocery shopping and bill paying.
Well, I think having a chronic disease gave me all sorts of skill sets that other people don’t have. I don’t know how people do it. I think we’re all on a learning curve, but you don’t get advanced training; you learn the hard way when you sort of dive in. I have to sit down and say, “Look, we can stomp and jump and down all we want to, but here’s what we’re trying to do, and here’s what the system will and won’t do.”
So I think I have a good working knowledge of it, but it doesn’t mean it doesn’t continue to be a source of frustration. And there are certain brick wall things that [unintelligible] that you don’t attempt to overcome; you just attempt to deal with because that’s the option that’s available.
Right now I have my own residence. I have two brothers. I spend two or three nights, two out of three weeks, with him. We do a weird rotating schedule, but basically I do a third of the nights of the month that I actually stay at his house. He’s reasonably high functioning and able to be alone, although he’s teetering on the cusp of that.
My other brothers don’t always stay overnight, but on the days I’m not there they at least come by and make sure he gets one hot meal and sort of check on him.
I think it’s very tough. But I do see a counselor about every two or three weeks. And over the years that has been focused on my own little health issues, which include side effects and mild depression and anxiety, all of which are probably linked to long-term living with HIV, but also involves a lot of support for what I’m doing for my dad in the last five years
Again, I’m privileged because I’m disabled and on Medicare and found somebody who’s willing to accept that so he doesn’t make me pay the copay and I’m able to do this.
I think that’s a really touchy issue. I think it hasn’t had much of a direct impact. There are definitely expenses associated with me caring for him, mostly related to wear and tear on my car and gas, driving back and forth and driving him around, but also related to things like if I need to get something for his house and it’s so much drama to arrange for him to pay for it that I sometimes just pay for it. I do have some savings, in terms of the meals I share with him that he pays for, but there’s a little bit of a drain on me from that for sure, financially. So that’s a real factor.
It’s also really down to a question of one resource versus another. Like you say, we have a routine where he pays for his groceries and his medicine. As long as we’re within that routine—when I have one of those stressed out, 19 other things going on, that’s when you say, “Whether or not I get this $15 worth of groceries reimbursed is not worth the wear and tear on my psyche and my time.” There really is that competing resource thing, which I think is a little bit interesting.
Caregiving is a gift that many of us get, and it’s made me able to take on certain tasks that my brothers have trouble with. I think there’s an assumption in the family that I have more time and energy available because I’m on disability and because I don’t have a family in terms of what a traditional family is. I think my family has come a long way in recognizing my current partner as sort of “REAL” family. But I think there is a background assumption. And there’s a background willingness on my part to make those sacrifices. It may have something to do with internalizing that.
Category: Economic Justice