*To my readers: I apologize for the long absence (again). I was applying to law schools and am proud to announce that I will be attending Saint Louis University School of Law this coming Fall! Thanks for your patience and I promise to write more consistently on this blog.*
If I had a dollar for every time I had to choose between making accommodations for a caregiver and not having care, I would have too much money to qualify for Medicaid. Now, part of that is my fault. I tend to be the emotional caregiver in most of my relationships. But it isn’t without reason. The power imbalance between myself and my caregivers is a palpable reminder of my weaknesses. Having been victimized by caregivers in the past, I know how bad it could be, and I’ve heard stories from some friends that make my skin crawl. So I emotionally accommodate people to a fault.
I’ve held my aide’s hand while she was crying over her boyfriend slapping her during a fight, even when I needed to go to the bathroom so badly I was about to lose control of my bladder. I’ve gone without showers because I didn’t want to be an extra burden to a stressed-out aide. I’ve decided to go to bed later than was healthy for me because my nurse was upset about her husband doing something or other (I honestly don’t remember, as crass as that sounds) and I didn’t want her to make a distracted mistake and injure me. Some people see that as being accommodating when I shouldn’t be. I see it as self-preservation. By checking in emotionally throughout the day and in some ways making my daily activities revolve around my caregivers, I know that I’m doing everything I can to avoid a physical injury.
To be fair, most if not all home health agencies have protections in place to prevent inappropriate behavior and expectations on both sides of the caregiver-client relationship. And all of the ones I have worked with have had a policy that promised that their client could request that a caregiver not return to their home for any reason under the sun, including unprofessional behavior. But that doesn’t always help. My options usually boil down to having a caregiver I don’t like or not having a caregiver at all. And that’s not really a choice is it?
That’s where I think the real trouble of this situation begins and ends. I (and people like me) work hard to alleviate a power imbalance because, despite all assurances, there is one. And there always will be. We are part of a relationship in which the other person helps us in very socially conventional ways, and we say “please” and “thank you” after they do it. Then, depending on the help they give us, we are socialized to want to repay them. It’s hard to always be on the receiving end of favors. But I need the help, so it’s not like I can just do without.
But still, I think a lot of people with disabilities pay for the power imbalance between themselves and their caregivers in ways that they don’t truly need to. Boundaries are important in every relationship, but that gets muddled when you have a disability. It’s hard to talk about personal boundaries and then ask for help going to the bathroom. It’s hard to talk to your caregiver about emotional distance between bites of the dinner they made and are now feeding you. But it’s harder to hold your bladder until your caregiver is finished telling the story that never ends about their semi-abusive relationship.
I felt empowered when I recognized my behavior as overcompensating for my perceived lack of power and started standing up for myself. I had to realize that my life shouldn’t have been as hard as I was making it. I (slowly) started kindly reminding my caregivers that if they were unable or unwilling to help me physically when I needed it, they may want to look for a different job where people like me aren’t dependent on them. It’s awkward and at times I worry that I’ll come across rude or uncaring. I try my best to not come across overly harsh about it, and I still accommodate people too much. But I don’t want to be a robot. Finding the balance is really difficult.
I think another thing that would help ease the stress would be to actually pay the caregivers as much as they’re worth. That means not minimum wage or anything close to it. Part of the difficulty in having reasonable expectations for caregivers is that they are paid at an unreasonable wage. On one hand, I could say that the amount they’re paid is not my problem and is set in stone by the state. That’s true. But it’s also unrealistic to expect people to treat their job as an important part of their life that comes above everything else when they are paid so little. Their wages being too low results in a lot of issues, including caregivers calling off because they just don’t really feel like coming into work that day and the money isn’t really worth it. That’s perfectly reasonable on their part. But no matter what reason they decide not to come to work, I don’t get the care I need.
So I try my best to make work a place worth coming to. I become their friends and I get the care I need. Is that manipulative? Maybe. It doesn’t change the fact that I need help and that’s the best way I’ve found to get it. And on those days that an aide doesn’t show up for a reason that I know is not true, I spend hours sitting at home by myself, wondering if they are now going to quit, if they like coming into work with me, and what I could do better. And that kind of worrying, though exhausting, is a nearly daily occurrence. My caregivers are the first thing I think about when I wake up and many days, they’re the last thing I think about before I go to sleep. Will my caregiver show up tomorrow? Will she be on time or will she be late? If she’s late, will my nurse get mad that she has to stay past her appointed time? if she gets mad enough, will she quit? And if my aide is late, will my aide quit? Are there personal things going on in her life that make me wonder if she is ready for this kind of job? These thoughts are repeated in my mind ad nauseum.
Interestingly, worrying about my caregivers is something that a lot of people don’t know that I do because I almost never talk about my care issues. People get bored. Most people are uninterested in knowing about all the little things that make life with a disability difficult. But it is mentally and at times physically taxing to take emotional care of everyone around me. I think a lot of people with disabilities can relate to that. Because there’s a whole system of things that tire you out when you have a disability. Inaccessibility, ableism, and just regular old health issues are just part of a whole host of things that people with disabilities have to deal with, not including personal issues with caregivers.
Having caregivers that I have to take care of emotionally is constant background music of my life. It happens so often that I have to remind myself to keep some emotional distance with the people that work here for my own sanity and mental health. Because benign neglect is still neglect. It is my deeply held wish that the people reading this have no idea what I’m talking about. I hope that all my friends with disabilities have always kept strong boundaries in place with caregivers. I truly hope that. But I have a feeling that it’s not the case for everyone.