Chasing Perfection? #SoCS

Posted on by Astrid

Whenever I think of how bad I feel about my current care home situation, I am reminded of two seemingly contradictory statements from my staff. One is that I think every place is horrible anyway. The other is that I had “gold in my hands” at my old home. These seem contradictory, but really aren’t. They are two sides of the same coin: I am thought of as chasing perfection.

There may be some truth to this idea indeed, but that doesn’t negate the fact that one can learn and this place is definitely bad. It isn’t like I just need to accept what I have now just because I can’t have it all. Besides, if people – the powers-that-be, such as the behavior specialists – just had been honest with me about the fact that, indeed, to live with people of higher IQ would mean more expectations and less support, I’d have declined to move. That was, after all, the comment I put at the bottom of my “housing profile”.

And it isn’t like I chase perfection everywhere. Or honestly that I thought, at the end of the day, that this place would be perfect. Yes, when I read the home’s profile on the website, I thought it’d be, but that leaflet is either outdated or simply incorrect. But when the behavior specialist for my old home explained some things about the home, I did realize it wasn’t perfect. Same when I visited here twice. But then again, perfection doesn’t exist. And I was willing to make some sacrifices to live on institution grounds and have fellow residents I could chat with. But not everything I had: all the daily structure, all the useful day activities, all the proper help with ADLs and, interestingly, behavioral regulation too. Because, despite the fact that this home is an intensive support home, which means the residents have significant challenging behavior, whereas my old home was a care-based home, I see more people managing huge wildfires of escalating behavior without realizing the proverbial cigarettes they’ve thrown onto the ground themself.

This post was inspired by today’s prompt for Stream of Consciousness Saturday: “perfection”. I am sorry for being repetitive yet again. This whole care home situation is getting old, but I wish that meant I’d actually adjusted to it. I’m not sure I ever will.

Ideal Isn’t Real

Posted on by Astrid

Today is the day the word I picked for #JusJoJan was assigned to, so I’m pretty much obliged to write a post. My original choice for a word was “Home”, but I made up my mind as I wrote my comment on Linda’s post and chose “Ideal”. My plan was to then write about my ideal care situation.

I am not sure I can do it though. An ideal situation, after all, doesn’t exist and chasing it may mean I lose sight of the things I could appreciate in what I already have. That’s possibly what happened with the move to my current care home, much as I struggle to admit it.

Of course, I knew there were going to be drawbacks to this care home, but I minimized them in my mind. When, back in like late 2021, I read up the information on this care home on my agency’s website, it sounded ideal. In fact, I remember at one point telling my staff and some people on an E-mail support group I belong to that it was my dream care home. But that’s judging from a promotional webpage, not reality.

Then when I actually got the opportunity to go here, what I found out on my visits here indeed revealed some more negatives. However, for the most part, these were vague “gut feeling” negatives, not facts. A factual negative was the fact that staff here don’t tell us clients who will be on shift the next day, reasoning that they might fall ill. “But we all come back,” the support coordinator reassured me, “and if we don’t, we’ll tell you.” Well, the one time a staff left so far, I didn’t find out in advance.

Maybe, looking back, there were clearer signs than just my gut feeling that the dream care home was going to turn into a nightmare. I am not sure. Maybe I didn’t ask the right questions. Maybe the staff – purposefully or not – avoided answering the real questions, focusing instead on details. Either way, I can’t help it now. What I can do is never believe something is going to be ideal again. Ideal isn’t real, after all.

The Future Is Not Clear #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Exactly a month ago, I made the decision to start the process of looking for another care facility to live in long-term. I felt, at the time, that it’d take at least two years before I would’ve found a place and I was fine with that. Now, though I am still fine with the fact that it might take years before I’ve found the near-perfect place, my forever home as it were (oh boy, that sounds like the afterlife to me, haha), the path inbetween not being clear, doesn’t sit right with me.

I like to have control. I don’t like to have made my wishes clear and then not hear from the care consultant for months until he’s heard from an agency or something and they want to meet me. I don’t like the fact that a lot might’ve been discussed by those agencies with my behavior specialist or the care consultant or whatever without me knowing anything about it. That feels too vague. Besides, it feels as though I have no influence over it. Which may or may not be true.

In this sense, the fact that I’m intelligent, works both for and against me. My fellow residents, who have severe to profound intellectual disability, don’t even know anything about such big decisions. Yesterday, the least intellectually disabled of them moved rooms and he seemed to have had little say in the matter. That sounds very scary to me. I want to have a say. Yet if I can’t, and things are made clear at my level of understanding, as they were with him, then maybe it’d be easier.

Now, I do intellectually understand a concept like two years or more, but emotionally, it’s very hard to grasp. I wish the future were more tangible in this sense.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “clear”.

The Best Decision of My Life

Posted on by Astrid

I really want to write, but, as usual when I’m like this, so much is spinning through my mind that I cannot ultimately get anything out of my fingertips. To get myself started, I decided to look at the book Journaling with Lisa Shea and picked one of the journaling prompts on gratitude. It asks us what the best decision of our life was. Was it an easy decision or a hard one? I’m pretty sure I already covered this topic several years ago, but the answer may be different now.

After all, up till quite recently, I would have said the best decision I ever made was to consent to being admitted to the psychiatric hospital in 2007. That, after all, set in motion the wwheels that ultimately got me into the care system. However, looking back, I could just as easily have selected my choice to go to the blindness rehabilitation center in 2005 rather than to university. After all, that was what led me to the training home and to my autism diagnosis.

I honestly don’t want to give the psychiatric hospital people, particularly my last treatment team, the credit they get if I say that getting admitted was my best decision ever. After all, like I have said before, I didn’t make much progress in those 9 1/2 years in the hospital. Worse yet, the only difference between my care arrangement before the hospital and after it, was that my husband was now in my life. My husband deserves the kudos for that, not any mental health professional.

Instead, the best decision I ever made, I made rather offhandly on September 20, 2018. This was the decision to allow my support coordinator to schedule an appointment with her regional care consultant on getting me into long-term care. The appointment itself took place on October 4.

I say I made the decision rather offhandly, in that we were discussingn living options and I eventually said, sort of half-heartedly: “Okay, you can ask your care consultant to come.” In truth, the decision was a really hard one.

Even though I had planned on going into supported housing ever since my initial psych hospital admission in 2007, it felt kind of like I was betraying my husband, my parents, my former treatment team and everyone else by admitting this is what I needed. For this reason, my husband’s first words when I said my support coordinator had scheduled the appt with her care consultant, were very comforting: “You know I support you, right?”

Decisions

Posted on by Astrid

This week, V.J.’s weekly challenge is all about decisions. V.J. is facing a decision regarding an opportunity to buy a house.

My husband and I faced a similar decision last summer. I had been approved for long-term care funding on June 4. This would mean higher costs for my care, as the copay for long-term care is several hundreds of euros a month, while the copay for community care is at most €19. This made our search for a house to buy more urgent. After all, mortgages are usually cheaper than is rent on a similarly-priced house. We had inquired about buying the house we were renting at the time, but the housing corporation had refused.

My husband did most of the visits to possible houses by himself, including the one to the house we ended up buying. This house was about the only house within our budget that wasn’t falling apart or being rented out for an undefined time. The latter of which is illegal, but that didn’t help us.

So my husband ended up choosing our house in Lobith. I was hardly involved with the paperwork, except where I had to be because we’re married. I was pretty sure I wasn’t going to live in this house for long anyway.

Similarly, my husband left all decision-making regarding the care facility I was going into up to me. Of course, this is in a way different, in that I’m a legal owner of our house and he’s not legally anything regarding the care facility.

I ended up moving to the care facility in Raalte just two days before we were to sign the contract on our house.

It’s indeed somewhat interesting that my husband and I leave each other so much room for decision-making regarding our own lives. Other married couples probably do much more shared decision-making. I don’t know whether it’s a good thing or not the way we do it. People have encouraged me to get more involved with the financial and legal aspects of the house. I’ve also been told my husband could (should?) be more involved with my care. But as long as we’re both competent adults, it works okay.

I’ve been thinking of making my mother-in-law my official decision-maker should that ever change in my case. I know my nearest relative would be my husband, but I want in any case to prevent my parents or sister from becoming my guardians. After all, I’m not too sure they truly would have my best interest in mind, though obviously they’d think they do.