Hospice

Say it with me, I work in a nursing home. And while I don't consider nursing homes for old people to be the same as institutions for young PWDs (there is a big difference between going into a setting like this at the end of your life, and doing so as a young person often at the cost of pursuing the things that most people your age get to pursue), I do think I am learning about institutions and why they just aren't the best thing for anyone--at least not with staff ratios that are so badly suited for people's support needs.

This is obvious, but institutions create "behaviors." They create people who are demanding or mean or angry. A person who likes to go to the bathroom frequently isn't a bad person if they can go to the bathroom independently or if they have an aide at their house whose job is to take them to the bathroom whenever they want. But if the person shares an aide with 20 other people, she becomes "the person who always wants to go the bathroom and doesn't even fucking do anything in there" because of the effect that her quite innocent and harmless personality has on an already overwhelmed aide.

And the big thing is, some people don't want to sleep at night. They want to get up. They want help getting up and going somewhere. I clearly cannot provide this help. They get mad. I start thinking to myself, "why won't they just chill out and watch TV in bed," when the person wants something totally normal that I would probably be asking for sometimes if I lived in a nursing home.

There are various ways of dealing with this situation, but recently I was introduced to the idea of pretending that someone is about to die so they can get hospice services. This means that the nearby hospital associated with us will send an aide just for that resident, to stay with them and do everything they want. I guess when you're about to die you deserve to have all your whims followed even when you have support needs, whereas other people with support needs just have to suck it up and take what help people have time to give them.

I'm not saying this is exactly a lie since we probably do have to convince people that the person could die in 6 months. But it's not like this happens to everyone who might theoretically die in 6 months, because some people don't care or wouldn't get that much out of having their own aide. It happens to people who need/want way more support than we can give them. They are the people who are suddenly like, "you guys he's about to die, he needs to be on hospice!"

This is probably not that interesting but I just thought it was kind of a funny and not very subtle way of dealing with shortcomings of institutions.