#WeekendCoffeeShare (June 3, 2023)

Posted on by Astrid

Hi everyone on this first Saturday evening of June. I’m really motivated to write another blog post, so am joining in with #WeekendCoffeeShare. I’ve had all my coffee for the day. In fact, the other residents didn’t even want their evening coffee, so the staff made a cup of Senseo for me. I still probably need to drink some water, so if you’d like a glass of water too, that’s totally cool. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d share about the weather. It’s mostly been quite good, though not summerlike yet. The mornings in fact have been quite cold, but in the afternoons, it’s often warmed up to about 20°C.

If we were having coffee, I’d post pictures of the polymer clay unicorn with wings I created a few weeks ago. Although the glitter on its wings drooped a bit (or a lot), I think it turned out quite lovely overall.



If we were having coffee, lastly I’d tell you all about the meeting with the two behavior specialists – my own and one responsible for a potential new care home (or maybe several, they were deliberately vague) here on institution grounds – I had on Tuesday. Like I might’ve said last week, my assigned staff did mention a few care homes she’d heard about, but she wasn’t sure either and probably didn’t realize I wasn’t supposed to know. I obviously googled these care homes and also ran them by someone I know online who offered to help me prepare for the meeting. She also read the info the website provides on my current care home and concluded that it’s probably all “window dressing”, ie. the care agency trying to make a good impression on their site without giving much info away. She recommended I focus my points in the meeting on what’s important to me in staff attitude.

So that’s what I did. I told the behavior specialists that, regardless of what type of home I’ll move into, it’ll never be a perfect fit because there just aren’t enough people with similar needs to mine in the Netherlands. Therefore, what’s important to me is staff being willing and able to get to know me and accommodate to my needs without constantly shoving “how this home works” in my face. Of course, I did say I’ll need to adapt in some ways, but constantly needing to adapt to “how this home works” in every single way isn’t working for me. I explained that I’m significantly overestimated here at my current care home. I also explained that, while the staff have made some moves in my direction eventually, them majorly shoving “how this home works”in my face during the first few months significantly diminished my trust in them.

They asked a few specific questions, but mostly just listened to me. I hope something will come out of this.

24 thoughts on “#WeekendCoffeeShare (June 3, 2023)”

      1. Well, I think these homes, their whole reason for being there is to cater for residents such as you. So they have to be flexible. But you do too. It seems prefectly reasonable that you should say that. They should not forget that they are earning a lot of money for having you living on the premises.

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        1. Well, I’m not sure I’m actually cost-effective to my home due to the one-on-one I receive. Of course, the home gets significant money for that too, but the way my support coordinator explained it to me I get more support (that is, theoretically speaking, when my day schedule is followed to a T, which it never is) than they get paid for.

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            1. I’m pretty sure you’re correct. After all, like I said when originally sharing about the two hours of one-on-one a day I get, in theory, that I don’t have the funding for, “extra care” (one-on-one) is provided on top of one’s basic care profile and yet, according to my support coordinator, literally every tiny bit of support I get is “extra care”, up to and including the two minutes the staff come out to my room to supervise me while brushing my teeth. For clarity’s sake, a basic care profile covers individual care too (otherwise no-one without “extra care” could get any help with their personal care or other one-on-one attention). The reasons my support coordinator gives why literally all my care is “extra care” are not based in reality, so I assume indeed that it’s probably to make me feel grateful.

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  6. Keeping my fingers crossed that they can find a reasonably good place for you. It sure seems difficult to find a perfectly suitable place for your needs when you have multiple disabilities, but it shouldn’t, at least in theory, be too difficult to find a home where people would be willing to adapt a bit to your needs rather than expect you to fit the mould perfectly without helping you much with it.

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    1. Thank you so much. I sure hope you’re correct about that last bit. I am not convinced, as not only have I experienced being rigidly pushed into the mold more than I’d like to even remember, but with the current state of disability services (ie. care agencies being heavily dependent on self-employed people and temp workers), it is hard to even find a team to consider this.

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      1. Yeah, I mean that’s why I said in theory. I think theoretically it really shouldn’t be a big deal to accomodate someone with a bit different needs than most, if there’s some good will and ability to compromise on both sides. But I myself have been pushed into the mould like that too, even though in different contexts, so I know it doesn’t necessarily work like that in practice. Which is why I’m keeping my fingers crossed for you all the more. 😀

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  7. Wow Astrid, I did not realize what a maze of care details you’re dealing with. No two patients are ever going to be alike so I would have thought that your staff would be used to adjusting as needed.
    It sounds like progress is in flight though so here’s hoping this round works out.
    Blessings.

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    1. Thanks for sharing your thoughts. Well, of course no two clients have the exact same needs but usually, clients with similar needs are grouped together so that the staff’s general approach can be roughly the same. At my old care home, my needs were so vastly different from those of the others (profoundly intellectually disabled people, often with additional health needs) that the staff just couldn’t force me into their care mold. Here, however, on the surface my needs appear similar, so it’s tempting for staff to start out by applying their general care approach to me. Which is, quite frankly, the opposite of what I need.

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