Hi everyone. I haven’t blogged in over a week because I’ve been struggling once again. Honestly, I can see why judging from my experience over the past 2 1/2 years, people would say I’m always struggling anyway. The thing is, there are and there definitely were times I am or was struggling less. Besides, to say that this is just the way I am, is blaming me for the system not meeting my needs. And we all know that the system is broken and this is a reality, but I’m honestly getting frustrated with how little recognition I get for my attempts at coping with this reality and how much blame I get when I fail at doing so.
Now on to why I’m struggling again. I mentioned about a month ago that I would no longer be assigned unfamiliar temp workers. This is a definite positive. However, with this home having twenty residents, many of whom with high support needs, the pool of so-called familiar staff consists of at least thirty people. That isn’t the problem: I am fine with all thirty coming into my room to do activities with me, just like I’ve always been fine with the occasional unfamiliar temp worker. The problem is that all thirty so-called familiar staff are supposed to be assigned to me equally often and I’m not allowed to have a preference. The reason is the idea that I’ll add more people to my trusted circle if they’re required to be assigned to me more often.
I can see their point, in particular because four out of eight staff who I consider part of my trusted circle now, are either on sick leave or leaving soon, be it temporarily (on maternity leave) or permanently. I can see why one would like to avoid a situation like with my assigned staff in Raalte, who left about two months before I did and who at the time was one out of only three staff I fully trusted. Then again, I’m never going to have a circle of thirty, just like most people don’t have thirty close friends. And that’s what this whole “get to know everybody” thing feels like. I do try to expand my circle as needed, but I just can’t treat all staff the exact same unless they treat me the exact same and, in that case, we’d all be losing sight of each other’s individuality.
Besides, the staff don’t follow their own rules when it suits them. For example, it’s a rule that I’ll see one staff for my morning activity and lunchtime, but they’ve been switching that around when they felt like it, yet telling me (and each other) of the rule that they must switch at other times. In other words, the staff require me to deal with a minimum of six switches of staff per day, but when it suits them, this can be increased and yet it can’t be decreased. That’s while I made it clear in the document detailing my care needs last summer that I don’t do well with staff switches. Yet they blame me for the agreements we made back then not working, even though they didn’t follow through on most of them. Most notably, they’d told me they’d try to have a trusted staff assigned to me most days for at least part of the day and that just wasn’t happening. In fact, eight out of ten times at least, the staff assigned to do nearly four hours of support with me, was a random, unfamiliar temp worker. I don’t blame myself for this not working out.
I’m sharing this post with the Writer’s Workshop for this week. It was a recent frustration, in that this rule (about required switching) hadn’t been adhered to as strictly as it’s now until last week. I’ve also had a lot of discussions about it with my support coordinator this past week. I’m having a care plan review next week and am planning to raise this issue both specifically and as an example of a general trend towards blaming me for a broken system and mistrust towards me. After all, staff are claiming I would only want my “favorites” assigned to me if they didn’t require staff switches as often as they do now. Let me just say this wasn’t even the case in Raalte, where I did have a core team of at least somewhat trusted staff.
A Multitude of Musings 
I’m sorry you’re going through this. I can highly relate to the parts about being blamed for the atrocious systems we have failing at every possible opportunity. And being constantly inundated with temporary workers, in spite of all the loads of research we’ve done proving how beneficial continuity of care can be, is incredibly frustrating and infuriating as well. Sorry I don’t have any words to make this better but I can completely relate to those points.
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Thank you so much for empathizing. I’m so sorry you can relate. In a sense, I understand that temp workers are part of the current economy and can’t be avoided, but that doesn’t make me negative/demanding/whatever for getting frustrated with it.
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I am sorry you are going through a rough time, it’s not all your fault things are not going how everyone would like, as you said the system sucks and is pretty fractured and I have to say only wanting your favourites is bloody normal and you should never be made to feel otherwise. Your life is a hard struggle and some days it must feel near impossible to deal with stuff and people. In my family we all have days when “peopling” is not something we feel we can do, by that I mean deal with or be around people in general including family members, as it just seems to much effort.
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Thanks for your kind comment. I honestly can’t imagine going a day without human interaction, but when that’s what you need, you should be able to get alone time. I mean, some staff force me to accept them into my room and, even though what I really need is for another staff to step in, if I have to choose I’ll choose alone time.
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Yikes, what a mess. I hope you’re able to get things worked out sooner rather than later.
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Thank you. I really hope so too.
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As this post is essentially my introduction to you, I am ill equipped to offer anything but solace.
There is nothing quite as frustrating as not being involved in your own care- and it sounds to me like they are leaving you out of the equation.
My heart goes out to you. I sincerely hope a solution makes itself available soon.
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Thank you so much! This issue unfortunately isn’t the only challenge my staff and I are facing with regards to my care needs. I have asked to involve an external person or several external people, such as through the Center for Consultation and Expertise. This is an agency that helps clients and care teams resolve complex care situations. They were involved in 2018 when I was basically kicked out of my then day program. Now no-one is seriously considering me leaving this home, but I think this is a better place to start a consultation from than once a place has already become definitely unsuitable.
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I’m so sorry you are struggling. I am too (for different reasons obviously). Just need to be a little patient with ourselves, which can be a struggle in itself. 💙
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Thank you so much for your supportive comment! Here’s hoping you’ll be struggling less soon.
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Same to you my friend. xxoo
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that is a tough situation Astrid, I hope it is resolved somewhat if not all the way by now, I wouldn’t like constant staff switches that would unnerve me and trigger me to no end!
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The issue isn’t resolved yet, but I hope it will be.
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