Setting boundaries with caregivers

If you google caregiving, you won't find much written about how those of us with disabilities can go about setting boundaries about how we get our care, although there's a lot written about how caregivers should set boundaries with those they assist.

Articles about caregiving and stress also tend to be written for caregivers, not for people with disabilities. Yet those of us who deal with aides have to manage scheduling and disputes about who should do what, how often and in what manner on a daily basis. Sometimes we face aides who constantly talk about their own personal problems or try to hit us up for cash to solve those problems. Juggling the different personalities of caregivers can also be difficult. These relationships often require different approaches and compromises. Scheduling our needs for care with multiple people around our work schedule and still having time to have a social life can be challenging. Yet there is very little written about it.

Having paid caregivers places you in the position of being an employer, with the responsibilities that entails. This includes being a supervisor and can create one on one situations that feel very uncomfortable and can get personalized quickly. Despite this, it's important to maintain your boundaries so that you get the care you need.

For example, I once had an aide who was often very late and, on top of that, resentful when I asked her to do simple things that were part of her job. When I explained that I had a schedule, too, she told me that her boyfriend was disabled and he kept thinking of things for her to do as she was ready to leave the house. My gut reaction was to feel sympathy for her personal situation. But after going without meals a few times, I realized that I didn't want my schedule to be thrown off every time I scheduled her, nor did I want her resentment toward her living arrangement to carry over into my care situation. We came to a mutual decision that it would be better for her to work for someone else.

This is the kind of example that shows how important it is for those of us with caregivers to also have boundaries. Perhaps we have commitments--or needs- where we can't sit around and wait for caregivers to show. If our disability prevents us from preparing food, for example, having a reliable and timely person show up is important. If part of their job is to make us lunch, then showing up at 9 pm is unacceptable. Sometimes compromises can be reached, but it's up to us to know what we can compromise about, so that our care and quality of life remains manageable and our health isn't adversely affected.

Ultimately, both the responsibility - and authority- of hiring and firing needs to be handled in a way that is mutually respectful, but ever mindful of the reality that a caregiver who can not, will not or does not provide adequate care within the boundaries we set, may never be a good fit for us.