Quality of Care

Posted on by Astrid

Hi everyone. Today, I filled out a survey by the Dutch disabled people’s lobby group Ieder(in) on the quality of my care and its impact on my quality of life. I filled out the same questionnaire in 2023, a month or so before moving to my current home. Back then, I rated my quality of care 2 out of 10 and ticked almost every box on incidents I’d been involved in (as a target).

Today, I could think of only one incident box to tick: incidents due to lack of oversight, such as elopement. I mean, I myself have been aggressive towards staff, but that’s not what was meant. I also rated my quality of care 5 out of 10. That’s still not good enough, but it’s a lot better than it was back at the intensive support home. As my wife jokingly said, maybe in two years I’ll rate it 8 out of 10.

That’s not even entirely impossible, because as I explained in the field for additional comments, the bureaucratic framework for better care exists. By this I mean that I have a budget for one-on-one care that’s sufficient and that on most days, the home isn’t too short-staffed to provide me most of the care I need. What still makes me judge my quality of care as insufficient, is the fact that the way my care is organized in practice, doesn’t work for me.

There was a question about whether you have familiar staff or not. Back in 2023, I think I answered that I almost always had unfamiliar staff. Now I can’t remember which box I checked, but I did put into the comment boxes that the team including so-called regular temp workers is so large and new staff are oriented so chaotically that I essentially deal with a lot of near-strangers.

Speaking of which, my support coordinator thankfully agreed to another chance at orienting the new staff I mentioned on Saturday. Today, she attended my evening activity and we just chatted in order to get to know one another. I still feel some discomfort around letting her be oriented to my morning routine tomorrow, but agreed to it anyway. The fact that the staff even gave me a choice, shows improvement.

I must say I’m less willing to accept awful care now than I was two years ago. After all, let’s face it, almost no-one in the outside world accepts a random stranger into their house who refuses to leave and demands to do personal care tasks for them. I was forced to do exactly that until a year ago (and on Thursday, but thankfully my support coordinator changed that). In that sense, I wish there were a question on the survey asking me how my care compares to two years ago. I mean, in early 2023 I wrote a pretty cynical post about a day with optimal care. I reread it just now, thinking I’d claimed my care was actually optimal back then. I fully intended to contrast my revised idea of what constitutes “optimal care” now with my screwed view back then. Thankfully, my perception wasn’t as screwed in 2023 as I thought it was. In fact, I said pretty much the exact same thing I said on the questionnaire today: the framework is okay, but the practical reality isn’t. I do feel my reality is better though than it was then.

Care Needs

Posted on by Astrid

Last year, when I was first feeling like I was falling apart at my current care home, I wrote a list of my “needs” and E-mailed it to my assigned staff and support coordinator. I heavily watered down my wishes, thinking a need isn’t the same as a want and whatever comes out of a discussion of my needs, should be working for everybody involved, not just me. For example, I asked for more clarity on what activities I’d be doing each day and offered to use my whiteboard, but also said staff could just ask me what I thought I’d be doing and help me find a suitable activity; this last one was then put into my day schedule, ie. “Staff upon leaving asks Astrid what she’s going to do next”. Needless to say, this didn’t work for me, being autistic, at all, as it leaves the same amount of unstructured chaos as the old wording, which was simply that I had “alone time”, did.

Now, more than a year later and with the Center for Consultation and Expertise involved to help me and my staff improve my quality of life, I’ve written another list, but this time, it doesn’t offer solutions for my unmet needs; rather, it’s simply a list of problems I encounter at this home. In a way, I feel that being solution-focused should be more constructive, but then again this time I have the consultant to think up possible solutions to come closer to meeting my needs.

This post was written for the Six Sentence Story linky, for which the prompt this week is “need”.

#WeekendCoffeeShare (August 9, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s 7:30PM, so I just had my last cup (two cups, in fact) of coffee for the day. I’ll probably take a break from writing this blog post for my soft drink at 8PM. Please join me as we chat.

If we were having coffee, first as usual I’d talk about the weather. It’s truly beautiful! Today, the temperature rose to 25°C and it was quite sunny. Rain isn’t in the forecast until next Thursday I believe. I know, climate change and all, but I’m enjoying the summer while I can.

If we were having coffee, I’d share that I am still going strong with my physical activity goals. Yesterday, a staff mentioned the trampoline that’s on the campsite near the institution and we decided to check it out. Today, I went on the side-by-side bike with another staff. Because of this as well as having walked a lot today, I might break my active calories record according to my Apple Watch.

If we were having coffee, next I’d tell you that I unfortunately haven’t been crafting much lately. On Sunday, I created polymer clay earrings that are still waiting to go into the oven. Other than that, no crafty endeavors.

I did, however, create a dessert for myself and my fellow residents on Monday. It was good.

If we were having coffee, then I’d tell you that the rest of the week was quite hard. There’s this temp worker who is absolutely clueless about how to support me and yet he’s assigned to me almost everyday. Staff keep saying I should be giving him feedback more when he’s acting in an unsupportive way. First of all, well, no, that’s not my responsibility. They don’t ask the other clients to give feedback either, but when I point this out, they say it’s different for them because they can’t. I can, sometimes, a little bit and I tried this week in fact, but the temp worker didn’t learn a thing from it. Then I get told that the staff assign to me who they choose and it’s my responsibility to deal with it.

I also was told that, when the staff feel someone is trained well enough to support me, they will be assigned to me and I don’t have a say in it. All this comes across as if it’s me being deliberately difficult with certain staff based on arbitrary things, while in reality it’s the way that they act that makes certain staff more difficult for me to deal with than others. Besides, I’ve had staff assigned to me who themselves don’t even feel they’re capable enough just because these staff want to please and their colleagues pressure them. It may be easiest for staff to assign the most inexperienced temp worker to me because I try to be helpful and, when I am not, it is easy to blame me for allegedly playing favorites.

If we were having coffee, lastly I’d share that the Center for Consultation and Expertise found a suitable consultant for my case, but due to the summer holidays, the first contact won’t be until the end of August. This will unfortunately be a phone call with the behavior specialist. I’m not very trusting of the whole process at the moment, to be honest.

#WeekendCoffeeShare (August 2, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s almost 10:30PM, so no more drinks other than water for me. That green tea I got a month ago has gotten a meaning of its own lately, symbolizing my lack of independence and self-determination. But I’m getting ahead of myself. Grab yourself a favorite drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been rainy most of the week and honestly less warm than I’d like it to be. I refuse to wear long-sleeved shirts in the middle of summer, but today, I almost regretted going out in just a T-shirt.

If we were having coffee, I’d tell you that in part due to the weather, I haven’t been as physically active as I’d have liked lately. Today, my spouse and I wanted to go for a walk but it was raining pretty hard so we turned around within five minutes. That was when I was out in just a shirt. I’m hoping I can still meet my movement goal on my Apple Watch today.

If we were having coffee, then I’d share that I was at our house today. My spouse got a new cat about six weeks ago and I hadn’t met him yet. His name is Caleb. Unfortunately, he hid under our bed as soon as I walked in the door and had to be dragged down by my spouse for me to be able to pet him.

We originally intended to cook dinner together or get pizza delivered, but since the weather didn’t permit us taking a walk and my spouse didn’t want to stay inside the house all day, we decided to drive to Apeldoorn. I needed a new jacket, after all. My old one, I’d bought seven years ago and it’d finally gotten damaged beyond repair in addition to being quite dirty. When my spouse asked me my size, I made a guess. It turned out the old jacket was several sizes bigger. Then again, back in 2018 I was at least 10kg heavier than I am now. I finally got a jacket with a size inbetween my original guess and the old one’s and it fits perfectly.

If we were having coffee, then I’d tell you that, as of yesterday, I’m once again a tiny step down with my medication. Specifically, I’m now on the absolute lowest dose of pregabalin. I was never on a high dose anyway, in fact having been on my start dose for years, but as it is in medicine, apparently going up is easier than going down. Six weeks from now, I’ll most likely be completely off of pregabalin.

If we were having coffee, then I’d share I’m still struggling. Part of it is the realization that my life is far from “normal” and the fact that I feel guilty about not accepting this reality. I constantly have my last home’s staff’s words in my head about never having a perfect day. I am also constantly thinking of ways in which my life could be even a tiny bit more meaningful.

If we were having coffee, finally I’d share that I did have some good moments over the past week. Like I said on Thursday, I have been quite active in the kitchen. I also on Thursday crafted another clay parrot.

The staff who’s leaving, took this one and the one we made last week home with her yesterday.

Tomorrow, one of my assigned staff is going to do my morning activity with me and we agreed to work with clay again. I have yet to think of some ideas for what to make. She wanted an elephant, but I’m not yet sure how to go about doing that.

July 2025 In My Kitchen

Posted on by Astrid

Hi everyone. It’s been a few months since I last participated in the In My Kitchen linky, because I didn’t do much of note in the kitchen. This month I finally got active in the kitchen again, so I’m participating in the linky again.

First, I got some cake mixes for my birthday last month, so on July 3, I set out to bake one of the cakes. I got strawberry, raspberry and lemon-flavored cake mixes and selected the one with strawberry. To be honest, I had expected there to be more strawberries in it. It in fact looks like a plain yellow cake and that’s what it tasted like too.


Over the next few weeks, I was greatly struggling and didn’t do anything in the kitchen. That is, maybe I created a smoothie once, but I’m not even sure about that.

Speaking of smoothies though, I did create several that I loved over the past month. One, I made yesterday. I used frozen cherries, vanilla-flavored soy milk, cacao powder, instant coffee, a little honey and a dash of sea salt to make the flavors pop.

About two weeks ago, I finally got the idea again to whip something up and I decided to make overnight oats.

I made overnight oats once again this week, topping them with a tropical dried fruit mix that has an E Nutriscore, meaning it is about the least healthy food choice in its category. No photo this time.

A staff who is on sick leave and occasionally pops round as an extra, offered to help me cook a meal for my side of the home the next Tuesday. I cooked curried rice with chicken, bell peppers and bok choy. I hadn’t had bok choy since childhood and incorrectly assumed its green leaves can’t be eaten. The meal doesn’t look as thin as I believe a curry should be, but it was delicious.

The same staff came over here this Tuesday again and I was again allowed to choose a meal and cook it with her help. I chose a vegetarian pasta bake with peppers, onions, garlic, canned tomato chunks and topped with mozzarella. One of my fellow clients said she didn’t like the mozzarella, but I think it was because she didn’t recognize it and I believe she did eat it after all. Everyone else loved my meal. Next time, however, I’m going to leave some of the seeds of the peppers in, because I’d have loved it even more than I did now with a little more spice.



Since I have been cooking more lately, I decided to look for an app to organize my recipes. After trying many apps, I settled on Recipe Keeper. Like I mentioned in my coffee share last week, one of its drawbacks is the fact that I can’t have my password manager save the password. This makes me a little suspicious, but I try not to care.

#WeekendCoffeeShare (July 26, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s 9:45PM, so all I’ll have to drink before going to bed is water. I don’t mind though and hope you don’t either. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been raining all week, but temperature-wise, it’s been nice. We had daytime highs in the low 20s Celsius most days. Today, the temperature rose to 25°C. I hadn’t expected it to rain, so didn’t take a jacket with me when driving to Apeldoorn with my spouse. Thankfully, it only rained when we were in the car or somewhere else inside.

If we were having coffee, next I’d share that my spouse and I may not be divorcing after all. It’s a long story that is too personal to share on a public blog. The short version is that I sent an impulsive text last week asking my spouse to finally make arrangements, because I wanted to live independently. The reason for the text had nothing to do with my spouse, but it did get things set in motion. As it turns out though, it’s probably not practically in our best interest to divorce.

If we were having coffee, I’d go into the reason for said text: one of my “favorites” among the staff is leaving and this is at a time when I’m struggling significantly with most other staff seeming at once not to agree on any way to support me but somehow agreeing that I’m a pain in the neck. At least on a weekly basis, I hear stuff like “You can’t go anywhere anyway” or “Your spouse doesn’t want you in this state” when I’m being restrained or otherwise having my autonomy taken away.

Furthermore, it looks like my staff have decided that neither I myself nor my spouse have my best interest in mind, while in that order, we’re the ones most adamantly advocating for me. However, I saw impulsive comments my spouse made after we found out divorce may not be an option cited in my report. This wouldn’t have been such a big deal, had staff also objectively reported their own comments, like all the “You can’t go anywhere anyway” stuff. The way it sounds now, my spouse sounds like the bad one.

One of my assigned staff even got me to agree on getting more information about guardianship because she somehow feels that a person who doesn’t know me but knows the law is better able to make decisions for me. I have yet to tell my staff no on this one.

If we were having coffee, I’d share that I did finally work with polymer clay again. I made a parrot for the staff who’s leaving, because this staff has two parrots. We have plans for making her other one out of polymer clay sometime this coming week.

If we were having coffee, lastly I’d share that I’ve been obsessing over recipes and cooking again. Like I said yesterday, I made a curry for myself and my fellow residents on Tuesday. The staff who helped me with it, proposed we do cooking again this coming Tuesday. This time, I chose a pasta bake. I’ve also been making smoothies and overnight oats recently.

I have an app on both my PC and iPhone to organize my recipes. It’s called Recipe Keeper and I’m half convinced it’s spyware like TikTok. Other than that, its only drawback is the fact that somehow I can’t have my password manager remember the password. This has me paranoid too. However, it’s the only app that’s available on both iOS and Windows that is remotely useable for me.

Quality of Life #SoCS

Posted on by Astrid

Hi all. I haven’t written a blog post in nearly two weeks, since I’ve been struggling quite badly. However, I saw the prompt for Stream of Consciousness Saturday, which is “starts with Q”. Immediately, the word “quality” and, derived from that, “quality of life” came to mind.

I regularly write about this concept when discussing myself as a former preemie living with multiple disabilities. That’s not what I mean this time though. This time, I mean real, day-to-day quality of life. I’ve seriously been on a quest for a more meaningful life.

You might remember me talking about the cup of green tea I was allowed to have one evening. I said back then that it’s normal to choose when you want tea, so most people will not be appreciative of it. I was. However, as I spiraled further into depression, this cup of tea became the metaphor for how bleak my life is, actually.

It could be a lot worse. It was, back in the mental hospital, where, though I could grab food whenever I wanted (or at least I did), I spent most of my days lying in bed or surfing the Internet. Most of my fellow residents also have even less autonomy than I do. And yes, I know they’re severely intellectually disabled, but quite frankly that’s not an excuse. Just because you’re used to well-intentioned others making every single decision for you (and they are used to it as well!), doesn’t mean that’s how it’s always supposed to be. Or how it should be. Like I was at the time very grateful for the cup of tea at 9PM, that’s not how it always should be. That is, of course it’d be good if I remained grateful for a cup of tea, but in real life, I should be able to make the decision whether I want a cup of tea myself.

Unfortunately, I have a ton of ideas to improve my quality of life and gain more autonomy, but these don’t get to fruition. The reason is in part the fact that an idea has to be put into practice and executive functioning isn’t my best quality. Another reason is resistance from staff, either overt or covert.

I could write a book on all the ways staff have verbally, physically and in other ways hurt me under the guise of being human and having emotions too. Or conversely under the guise of safety for the group or that being the reality of staff-client relationships. But I won’t.

I’ll end by saying that, at least, on Tuesday I had a good day cooking curry for my side of the home. That’s what I mean by day-to-day quality of life: having the ability to prepare my own food, for example, or choosing what I’ll have for dinner. Of course, the other residents didn’t have a say in my choice to make curry, but they did appreciate it. We’re a long way from people in long-term care actually having meaningful lives, but this felt like a tiny contribution.

#WeekendCoffeeShare (July 12, 2025)

Posted on by Astrid

Hi everyone. It’s been a full week since I last wrote a blog post. I really would like to write more, but I’m struggling massively. Today, I’m once again joining #WeekendCoffeeShare. It’s 7:30PM, so no more coffee for me. I didn’t end up having the green tea I mentioned last week, but I might today. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Honestly, I can’t remember what the weather was like early in the week, but the last few days, it’s been good: partly cloudy with some sunshine and daytime highs around 25°C.

If we were having coffee, next I’d tell you that I’m still going strong with my movement goal on my Apple Watch. I never ended up doing those fitness mat exercises I mentioned last week, because I had to cancel my movement therapy session this week. I’m hoping I can do some exercises next week.

If we were having coffee, then I’d share that I’ve been quite depressed lately. On Sunday, I was even talking ending my life and, on Monday, I had a meltdown in which I self-harmed.

The staff who witnessed me talk suicide and who was the only one able to comfort me after my meltdown, asked the behavior specialist and team manager to come and talk with me. This meeting took place on Wednesday morning, but another staff attended it with me. I was masking heavily during the meeting and constantly rationalizing my feelings away. The team manager at the end said that he was glad I was doing okay, because there’ll be a time when he won’t have time for a meeting. That plus something about things possibly getting worse. This caused my thoughts to spiral and this got me intensely desperate. I was able to tell the staff who’d attended the meeting with me, that this comment caused me distress and she would try to relay this to the team manager.

When, about an hour later, the staff who’d witnessed my meltdown etc. came on shift, I expressed my despair to her, By this time, I was inconsolable. I cried and cried and cried and was intensely hopeless.

Finally, the staff contacted the behavior specialist, who came again to talk with me and this staff. This was an okay meeting. I’m still skeptical things will improve, but not entirely hopeless.

If we were having coffee, I’d share that I’ve been reading some books about autism by autistic authors. One is The Autistic’s Guide to Self-Discovery. I’m unfortunately struggling quite a bit to concentrate on it, which in turn reinforces the belief that I’m too broken to benefit from it.

If we were having coffee, lastly I’d tell you that my best friend’s mother came by on Thursday. She brought the new nightstand that she and my best friend had bought at Ikea to replace the one that broke when I fell over it several weeks ago. She also brought me a birthday present: some colors of Sculpey Soufflé, which is a brand of polymer clay I don’t have yet.

We went to have lunch at Hema and then went to the supermarket to buy blueberries and candy bars for me and carrots for her. I also told her about my state of mind, since she’s currently my informal representative. I do want to make my best friend informal representative for me too, especially once we’re formally divorced. I still want my now mother-in-law on it too because she has the capacity to attend meetings with me. However, I mostly want to make sure that in no way are my parents or sister contacted to make decisions about me.

Reminders to My Struggling Self

Posted on by Astrid

Hi everyone. In one of my many collections of journaling prompts, I came across a prompt about what you’d like to remind yourself of the next time you’re in a downward spiral. I’m pretty sure I responded to this prompt already at least once, but I’ll do it again. After all, today is the first day in a while that I didn’t have any significant stressors. Not that I’ll likely look at this list when I’m spiraling into crisis, but oh well. Here are some notes to my struggling self.

1. I have a friend. My spouse and I may be in the process of divorcing, but that doesn’t mean we won’t stay friends.

2. I have supportive people to connect with online and in real life. I’m thinking of my in-laws, but also of my support circle online. Some of these people, I’ve known for 15 years.

3. My staff may not always do the right thing, but they mean well. Yes, it’s a myth that they’re completely working in my best interest (simply because they have other people’s and the organization’s interest in mind too), but they do want to help me.

4. I have survived much worse than I’m enduring now. This doesn’t mean that my current suffering isn’t valid, but it does show that I am strong.

5. I am allowed to feel like crap, but wallowing in my feelings doesn’t help the situation.

6. The world may not have been made for me, but that doesn’t mean I can’t work towards improving it.

7. I can still write. And I can still create with polymer clay and other materials. I can express myself.

8. I can still move. Even if walking is painful (it currently is, but thankfully less so than it used to be), I can move in other ways.

9. I know myself best and know what’s best for me. I should really use my voice.

10. Pain (be it physical or emotional) is temporary. Things will (most likely) get better.

11. I have the capacity to find joy in little things. Such as homemade latte, my staff having repaired an old handmade necklace, or a staff complimenting me on my ability to adapt that particular moment.

12. A day doesn’t need to be perfect. I don’t need to listen to what my former assigned staff at the intensive support home said: that I’m negative because I didn’t have a perfect day even when my day schedule was followed without interruption. I am allowed to say “Okay” when people ask me how I am. I am not a bad person for not being upbeat.

13. I’m not a monster for being in crisis. I am still me.

I’m joining Thursday Thirteen (even though it’s still Wednesday here). I’m also joining #WWWhimsy.

Like a Rolling Stone… #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday is “favorite place”. I am not a fan of traveling, so I have absolutely no idea what my favorite place to go on vacation would be. I did go on a postponed honeymoon in 2012 to the Swiss town of Zug and it was beautiful. That is, walking through the mountains was quite an experience. The town itself was full of top-notch expensive cars.

We haven’t been on vacation since 2014 and, though my best friend and I (my best friend currently still being my spouse, for those who don’t know) have discussed vacation plans, neither of us is keen on going anywhere, honestly.

I would probably be considered a homebody. Except, what is my home? My staff often refer to the care home as “home” when talking to me, but it still feels off. And though I have no plans of traveling to any exotic locations anytime soon (or ever, considering most truly exotic locations are not easy to get to for someone who hates flying), I wouldn’t consider my room in the care home to be anything close to a favorite place. Or maybe it’s my least hated place out of all. After all, I’ve never truly felt home anywhere. Not with my parents, not in independent living or with my spouse nor in any of the places in the care system I’ve resided in.

I guess I’m like a rolling stone. After all, I’ve never truly connected to any particular place. This feels sad.