Care Needs to Be Suitable

Hi everyone. Yesterday, I came across a post on Facebook advising people who are feeling that the care they get doesn’t suit them. The basic point was care has to suit the client, not the other way around. In other words, as a client, you do not need to make yourself fit into the mold people caring for you have created.

I have struggled with this idea forever. In my case, there is an additional layer of complexity that the poster didn’t experience, in that not getting care isn’t an option for me. As such, if a care agency gives me the choice between consenting to whatever they want and being kicked out, it’s pretty much no choice. At least, in 2008, when the psych hospital gave me the choice between consenting to seclusion or discharge, they pretty much weren’t giving me a choice. Now, that “pretty much” doesn’t even apply, in that I’d be literally homeless without the institution. In this sense, my former staff who told me I’m easily replaceable, was right. It’s not like my staff would be unemployed without me, but I would be homeless without them.

This reality, however, has kept me silent far too long. Just because staff mean well and feel powerless themselves in the face of a complex case like me, doesn’t mean everything they do is justifiable or in my best interest.

Yesterday, I decided to apply for specialist client support. I used regular client support before and this is how the Center for Consultation and Expertise thing got started, but it’s been over eighteen months since I was in touch with this organization and it looks like I need more intisive, long-term help. I put on the application form that I’m struggling in multiple ways at my current care home.

The outcome may or may not be yet another move. I don’t want to decide either way yet, as I know that if I decide I want to stay here, it’ll likely mean having to put up with the current care situation, because my staff are at the end of their tethers. However, being that there simply aren’t enough people with my combination of needs in the Netherlands to form a home, I doubt any truly suitable place exists. This means that a care home, including the responsible higher-ups, has to full on agree that they want to and are able to adapt to meet my needs. That’s what I asked the behavior specialist responsible for this home at the time when I was put onto the waiting list to be placed here too, but apparently she wasn’t listening.

All I can hope for is that, with the help of the specialist client supporter, I can avoid this becoming yet another hopeless situation in which I’ll be involuntarily shoved down another home’s figurative throat and that home in turn will be shoved down my throat.