#WeekendCoffeeShare (December 13, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I’m starting this post at 5:35PM as my iPhone is upgrading to iOS 26. I’ll probably finish this post after my evening coffee at 7PM. By the look of it, the iPhone update might not even have been completed by then, as my Internet is incredibly slow. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Early in the week, the daytime highs were like 14°C and we had a little rain. No more rain today or yesterday and the temps have dropped to 10°C. That’s still warm for this time of year.

If we were having coffee, then I’d share that I’m still going strong meeting my movement goals on my Apple Watch and it’s now finally decided to actually add days to my streak. I broke my streak record a few days ago. The previous record was 309 days and it was set in June of 2023. However, of course I cheated with this one, as I paused my rings while sick last September.

If we were having coffee, then I’d tell you this week is a mixed bag. Early in the week, I found out that, as of next month, all self-employed temp workers will be let go. That’s understandable, as a self-employed person actually doing the same things as regular employees, is considered tax evasion on the part of the employer (in this case the care agency). The Tax Service had originally planned on handing out fines for this starting this year, but due to the problems in care and other sectors, it postponed this a year. I had known that this was going to happen for years, but due to the care agency’s careless attitude, hadn’t been sure that the care agency was actually going to follow through this time.

On Monday, one of the regular staff here, who is responsible for planning, said it’s indeed true and that this will likely lead to more staffing issues and possible cuts to our care. Other staff have been reassuring that my one-on-one hours have already been approved until late 2026 and I need not worry about cuts to my one-on-one. All this makes me quite worried regardless, as I’m just now learning to actually fill my one-on-one with enjoyable or meaningful activities.

If we were having coffee, then I’d talk about these meaningful activities. On Monday, I finished the Christmas decorations I crafted last week. No photo of the individual pieces, sorry, as my staff hung them on the branch that we use to decorate for the seasons before I remembered to snap a picture. I do, however, have a few pictures of the entire scene.


As a side note, my staff also borrowed some of my clay cutters for creating more decorations. These, I believe she is now finishing and will be putting up soon.

If we were having coffee, next I’d tell you that, yesterday, I visited the next town’s market again. I love going to this market, which is quiet enough that I don’t get overloaded yet there are enough stalls to buy all of the things I’d like to buy. I had fried shrimp at the fish stand. Well, one of two fish stands, actually. It turned out I usually go to the other one and like that one better, but I was with a staff who’d never been to this market. I also bought olives, mixed nuts and candy.

If we were having coffee, lastly I’d share that I finally got my mother-in-law’s access to my records at the care agency revoked. I had originally asked that she’d be given access because, for some stupid reason, the powers-that-be wouldn’t give me access. Their reasoning was that it’d lead to too much distress, something I now realize isn’t grounds enough for denying a patient access to their own records. However, due to this decision, for many years, nobody had access to my records, so the staff could basically write down whatever they liked. That’s why eventually I asked my mother-in-law be given access. Not that she ever reads my records or that I trust her to respond appropriately if she does. Now nobody has access again, but I’m soon going to persuade the behavior specialist and manager to give me access after all.

I Don’t Owe Anyone a Grateful Heart

Posted on by Astrid

Hi all. Today’s prompt for Reena’s Xploration Challenge is quite fitting. Reena asks us to ponder the paradox of gratitude and resistance.

Sometimes, by being grateful, we can bring about change. I am reminded of a story in one of the Chicken Soup for the Soul books in which nurses on one floor were irritated with another floor’s nurses for their constant negativity. Instead of fueling the conflict by becoming negative themselves, the nurses wrote a lengthy gratitude letter to their colleagues. I am not sure whether this was exactly what the story was about, but this was at least the message I took from it. The fact that the one group of nurses focused on the positive rather than giving in to the other group’s toxicity, turned the situation around for the better.

At other times though, particularly when there’s a power difference between two people or groups of people, gratitude becomes passive resignation. In this case, while it can be helpful in the short term to the oppressed person to keep a positive outlook, if the oppressor takes gratitude as acceptance, in the long run nothing will change.

I will give an example from my own life. Regular readers of my blog know that I’ve been accused of having a negative attitude by many people in positions of power, such as my care staff and treatment providers in various care settings. An example is being told I ought to be happy that anybody wants to work here at all. Well, no. While it’d be easier for me in the short term if I could just accept the umpteenth random stranger for my one-on-one care, in the long run it’d mean I’d always get assigned the random temp worker because regular staff would rather support the others and chill out with other regular staff while they can. Besides, even if it’d cost me less effort to resign than it costs me to rebel, I don’t owe my staff a positive attitude. If there’s anyone for whose sake I should have a grateful attitude, it’s myself.

It doesn’t mean I don’t struggle with this whole idea. I feel intense guilt whenever a staff throws some variation of “be happy anyone wants to work here” at me. I am also constantly reminded in my head of my assigned staff at the intensive support home, who was disappointed in me for never having a perfect day even when they’d followed my day schedule completely and had always assigned me regular staff. Which, for the record, never happened.

I, for clarity’s sake, don’t think violent resistance is the answer. When I have a meltdown over some rule I disagree with, being aggressive will always end in me being restrained. However, there’s a whole world between aggression and passivity. And sometimes, unfortunately, the people in positions of power are so caught up in their reality of being the ones to decide, that they (either willfully or not) ignore my less obvious attempts at resistance.

For example, last week I was trying to resist the “one chance” rule about orienting new staff. I tried going along with what the staff wanted, but this only led to further abuses of the rule. I tried talking sense into the staff, but this didn’t work either. Finally, on Saturday, I had the most massive meltdown. I am not proud of my behavior at all. In fact, I really wish I could’ve solved the issue without being aggressive, if for no other reason, then because the staff are far stronger than me and I ended up being restrained. In the end, I thankfully finally got a meeting with the behavior specialist on Monday and the rule got ditched. Now all I can hope for is that my main message, that I have to consent to every individual rule or agreement affecting me unless the behavior specialist uses the Care and Force Act, got through to everyone.

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.

#WeekendCoffeeShare (November 1, 2025)

Posted on by Astrid

Hi everyone on this first day of November. I’m not struggling as badly with memories of my admission to the psych ward (November 2, 2007) as I was in previous years. However, I’m struggling nonetheless.

Today, I’m joining #WeekendCoffeeShare. It’s been a while. I just had my last cup of coffee for the day and will probably take a break from writing this post for my 8PM soft drink and meds. 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 a mixed bag but mostly rainy with daytime highs around 13°C. I didn’t do a lot of walking, but still managed to meet my movement goal each day this week. Unfortunately, it seems that my Apple Watch doesn’t care that I paused my activity rings while sick with probable COVID during the second half of September, as my streak is now down to 33 days.

If we were having coffee, then I’d moan about the fact that the care home is chronically short-staffed. There is, fortunately, a new staff here who started orienting a few weeks ago. She started her orientation on my side of the home on Tuesday. That day, I tried to make smalltalk with her, knowing that she’d be oriented to my activity the next day, but she hardly said a word. The next day, indeed, she was oriented to my activity. This went okay’ish, in the sense that I accepted her for the whole two-hour time slot and together with the staff doing the orienting, explained several activities. However, once again my attempt at getting acquainted with her didn’t get a response. The staff complimented me on how well I’d done. I told her she’d probably use that against me. I was right.

In the evening, the staff said she’d be orienting the new one to my morning routine the next day. Having hardly spoken with the new staff, I wasn’t comfortable with being naked around her yet, but the staff didn’t accept this. She claimed I hadn’t accepted the new staff in the afternoon either and just don’t want to meet new people and screamed that soon there’d be no-one left. I tried to explain my point of view, with the help of another staff, but to no avail.

On Thursday indeed the staff tried to force me to accept the new one for her orientation. She yelled that I had one chance and if I refused the new one now, she’d be considered as having had her orientation to me. This, I consider horribly unfair, as with the other clients, new staff get multiple orientations. But it’s in my rules, the same rules about no completely unfamiliar staff. I was originally told that the reason for the rules is simply money, ie. the fact that regular temp workers are not given an orientation period so I’m lucky to get one chance with them. I understand this, but I don’t think it should apply to staff who do get an orientation period. And for what it’s worth, I never said I needed temp workers to be oriented to me, but staff need to know these workers are still strangers to me and aren’t as familiar as the staff who’ve been working here for years. No rules can explain this, it’s about empathy. And I’m pretty sure the staff telling me off about refusing the new one, doesn’t have much of that for us clients.

If we were having coffee, I’d also moan about the fact that I now have no assigned staff at all. Like I said a while ago, the student one left for the intensive support home a month ago. The next one doesn’t want to work with me for now due to me having hurt her feelings. And yesterday I found out that the third one is off sick. I E-mailed the support coordinator asking her that, if I need to have another assigned staff, it won’t be the staff who I mentioned above. Don’t get me wrong, she’s fun-loving and great with activities, but she doesn’t know me behind the rules.

If we were having coffee, I’d try to end on a positive note. Yesterday, like six weeks ago, I joined the dance party at the institution townhouse. This time, I decided that I could deal with there not being a staff member for me and to just ask a volunteer if I needed help. One of the reasons was the fact that there were only two staff who are authorized to give meds at the home during the dance and I didn’t feel like I could ask one of them to accompany me, yet the other staff haven’t been oriented to me yet. I considered asking that one of the temp workers accompany me, but, for reasons that you’ll understand if you’ve read this far, felt this would be used against me. The dance was fun.

Finally, one more slightly positive note: we had general elections here in the Netherlands on Wednesday and, thankfully, Democrats 66 (D66) won. This isn’t the party I voted for, but it’s much better than the far-right Party for Freedom, which came out second. D66 is the most progressive, queer-supportive party out there. The reason I didn’t vote for them is the fact that healthcare and social security matter even more to me and the fact that D66 would likely need an economically right-wing party on the government too. However, unless Rob Jetten (D66’s leader) is a total hypocrite and cooperating with the far-right JA21 in favor of the left-wing GroenLinks-PvdA, things will be okay’ish in this respect. In any case, I’m looking forward to the first openly gay prime minister.

Am I a Monster?

Posted on by Astrid

Hi everyone. I’ve been struggling really badly once again. Nearly three weeks ago, I had an outburst that caused the second staff so far at this home to request to the team manager that she not be required to support me for a while. This staff used to be one of my three assigned staff. Another was a student and has since left this home to continue her education at the intensive support home I used to live at. The third one is still my assigned staff, but she only works a day or two a week.

With the staff who previously requested to not support me for a while, I’ve since talked things over, though she still refuses to be honest about the thing that got me to be angry with her, ie. her using literally every opportunity to assign me a temp worker. Because of this, I’ve felt like I had to apologize for my anger (which I see is necessary) but she wouldn’t have to apologize for or explain her behavior that upset me. With the current staff, I don’t have this issue, but I do mistrust her for having pretended to have talked it over then decided she couldn’t handle it anymore a few days later.

I realize part of the problem is my attachment anxiety. As a result of this, I mistrust people who try to come close and be there for me, because I know that if they truly knew me, they’d reject me. Which is, of course, true in theory at least: no-one in life is there for anyone else unconditionally. And, given that I sometimes don’t know who I truly am, I worry that I’ll be worse than even I can imagine if I let my guard down.

Of course, it’s also a self-fulfilling prophecy, as you can see from the fact that two staff in the past year have already rejected me. The current one even claimed she wouldn’t.

Even if I’m in the midst of severe self-doubt, I am (almost) certain that I won’t become physically violent if I let my guard down. The problem is that words hurt too, and I can unfortunately say quite nasty things even without meaning them. I mean, there’s been one instance, back at the intensive support home, when I hurt someone’s feelings with a literal personal attack: I said that it was her fault that she got hurt during a fellow client’s outburst. This staff never requested to not support me anymore. With the two who so far did here, my comments weren’t intended as they came across and, while they could literally be seen as hurtful, I didn’t mean them personally and had no bad intentions whatsoever.

I struggle intensely with this knowledge, that I don’t intend to hurt people but that I do it nonetheless. I also struggle to figure out a way to stop this. After all, they are not insults that caused these staff to reject me (though I called them both bad names too). If they were the insults, it’d be doable to erase these from my vocabulary, as I’ve mostly successfully done with certain other words. However, like I said, they were their interpretations of my comments about how they don’t know me that hurt their feelings. This is harder for me to process, as it means being aware of every possible interpretation of something I literally say. This is quite hard for me as an autistic person with virtually no cognitive empathy.

Besides, as I now realize, I probably have low emotional empathy too, as I wasn’t able to predict that the staff was just going through the motions when I thought we’d talked things over. She in fact supported me through an intense movement therapy session and I didn’t pick on her struggling at all. This makes me feel even worse than the fact that I didn’t realize at the time that my words were hurtful.

This low emotional empathy realization makes me feel like I’m a monster. Aren’t autistics supposed to have high emotional empathy? Aren’t psychopaths and narcissists the ones with low emotional empahty? I mentioned possibly being a narcissist to my wife and she denied I am. Then again, aren’t narcissists masters at making their loved ones believe they are the victim? Is all this my attachment anxiety talking, or is there some truth to the idea that I don’t deserve to be supported?

#WeekendCoffeeShare (August 15, 2025)

Posted on by Astrid

Hi everyone on this warm Friday evening. I’m joining #WeekendCoffeeShare. I usually do mine on Saturday, but I’m motivated to write now so let’s make use of it. I just had my evening soft drink and a single-serving bag of chips. I’d recommend you’d grab something to drink if you were here. Let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been hot all week. In fact, I’m pretty sure we have a local heatwave, meaning five days in a row of daytime temps above 25°C, of which three with daytime temps of 30°C or above. I haven’t checked the news in months and don’t want to check it now, but I don’t think it’s a national heatwave.

If we were having coffee, then I’d share that, thanks to the nice weather, I was able to eat outside three or four times this past week. Did I share my spouse gifted me a new outside table, because I’d broken the one I’d gotten last year? My spouse had ordered it online and had had it delivered to the institution. We hadn’t seen each other since, so yesterday after a lot of pestering, I decided to snap a picture. I rarely take pictures fully independently, so if this one’s unclear, I apologize.

If we were having coffee, then I’d tell you I’m still going strong with my movement and exercise goals on my Apple Watch. On Saturday, I did in fact break my active calorie record. Yesterday, I broke a record with the longest bike ride. My Apple Watch also said I burned the most calories during a cycling workout, but I doubt that’s true.

If we were having coffee, next I’d announce my participation in the Walk on Sunshine on October 4. It’s a walk to raise money for the Dutch cerebral palsy charity CPNederland. The goal is to walk at sunrise. Sunrise is at 7:45AM that day and the staff usually don’t get here until 7:30, but one of the staff agreed to come here early and do the walk with me. I signed up for the 5km walk, because that’s a challenge for me particularly in the morning, but not impossible.

If we were having coffee, lastly I’d tell you all that I’m still struggling. I experience a ton of trust issues towards my staff and am not sure these are entirely unfounded. Like, today my spouse and I were on the phone during my entire late afternoon activity and, though it was nice to talk to my spouse, I worried that the staff are going to cut my care hours because of it. After all, for some time they tried to make my spouse visit me each Sunday so that they could cut my hours.

Honestly, I think I’d be much more independent if I knew that, when I have a bad day or a bad moment, I can always get some extra support. In this sense, my psychologist back in the mental hospital was right that anxiety is part of the reason for my dependence. However, her subsequent actions to “treat” me, ie. kicking me out of the hospital into independent living with minimal support, actually worsened my situation. So did my staff’s decision back last year about my having to compensate for every moment I needed extra support due to distress. These and other strategies, while intended to encourage self-reliance, actually achieved the very opposite. After all, my abilities fluctuate and my mental state doesn’t adhere to a day schedule, so that I’m only in distress when I have one-on-one. No, I don’t purposefully work myself up in order to get more support, but my mistrust of my staff’s continued actual support does lead to distress.

March 2025 In My Kitchen

Posted on by Astrid

Hi everyone. I enjoyed the linky last month, so am participating in In My Kitchen again.

As regular readers of my blog will know, I don’t have my own kitchen because I live in an institution. We also usually get our dinners from a meal delivery service. Last month, I shared that I was hoping to do some more cooking in March. Guess what? I cooked dinner for myself and my fellow residents twice this past month.

First, on March 5, I cooked pasta with pesto, chicken and broccoli. My spouse joked after seeing the picture that the pine nuts were on sale. In reality, I hadn’t originally planned to sprinkle the pasta with pine nuts but my staff had loads of them, originally intended for her parrots, who don’t even really like them or that’s what she said.

A little over a week later, I cooked pasta again. This time, I included shrimp, lots of garlic, peppers, a few packages of mixed veg and, because according to me this was too little for ten people, a few bell peppers too. I needn’t have worried, because everyone had enough to eat and there were still a few servings left to go in the freezer.

I also made a few smoothies using my blender. Unfortunately, last week I found out that, somehow, the ring-shaped thingy that keeps the blades in place, had broken. I erroneously thought this meant the entire blender should be discarded. Yesterday, my spouse and I went to the electronics store and bought a new one, actually I believe it’s the same one I had. I also recently learned that I can actually make more smoothie with my blender than I used to think. After all, when you fill up the blender with fruit, veg or whatever you’re blending, you shouldn’t fill it up fully. Until recently, I however thought that this means you’re left with only, say, half the blender’s content of smoothie and that’s it. I never realized that you can add more food once the blender has finished blending some of its contents. Stupid, I know, but oh well.

In other kitchen-related news, my assigned staff has told me that she’ll add a weekly cooking activity into my day schedule. I don’t yet know when this is going to happen, but I did hear that my one-on-one support has been approved until the end of 2026 again. Yay!

March Memories

Posted on by Astrid

Hi all! Can you believe we’re already halfway through March? I honestly feel that time flies. Today, I want to share some random memories from Marches (is that a word?) gone by.

First, a year ago, I had just recovered from second-degree burns that I sustained in a crisis. Looking back, my life is much better now than it was a year ago, when we were in the midst of a weird idea from the staff that said I had to compensate for every minute I needed support outside of my designated one-on-one hours because of distress. I sort of understand the reasoning, because, at the end of February, I had shared with my behavior specialist and some therapists that, in an ideal world, I’d be able to rely on staff all the time. What I didn’t realize at the time, thanks to all the words about “unsupported time” in my day schedule, is that this is basically already the situation in 24-hour care. Of course, I can’t always expect a staff to show up in no time when I need one, but it isn’t like I’m ever truly supposed to be self-reliant. That’s until that crazy idea about compensating came to be, because, as one of my staff said it, my “unsupported time” was supposedly my structure. Let’s just say I disagree and am so happy that, after a month, the system was abandoned at the end of March again. Now, it’s actually in my day schedule that I can rely on the staff for support when in distress during my times of doing my activities by myself.

Two years ago, I finally had a meeting to discuss my leaving the intensive support home. I’m so very happy I insisted. I remember the intensive support home’s behavior specialist was a bit critical, because, well, I apparently hadn’t left the care facility in Raalte in 2022 completely voluntarily. As it turned out, some staff had been more happy that I’d finally gone than they had admitted. This is somewhat understandable, given that all other clients there had severe to profound intellectual disability and no or minimal challenging behavior.

I can’t believe I’ve been at my current home for eighteen months already. As I share these two snippets, one from 2024 and the other from 2023, I am intensely grateful. I am still struggling at times, but then again I was even at the best of times in Raalte.

Sharing this post with RDP, for which the prompt today is “March”.

Share Our Life (March 2025): An Average Day

Posted on by Astrid

Hi everyone! Today I’m joining Share Our Life, a linky with a monthly theme. This month, it’s to describe an average day in your life. Unfortunately, taking pictures is not part of my average day. I really want to change that, but for now, just text will have to do. I didn’t pick a specific day to describe.

I usually wake up at around 7:30AM when the staff are helping the resident in the room next to me with her morning routine. Since my first support moment isn’t until 8:15AM, I usually have a little snooze.

8:15AM is when my staff come to wake me up and help me with my morning routine. I hate showering, so don’t do it each day. I get dressed and have breakfast – usually quark with muesli and blueberries. My morning routine, including breakfast, can take up to an hour.

At 9:15AM, I’ll usually lie back in bed for a little slumber while listening to music on my music pillow.

My first activity time slot starts at 10AM. I sometimes extend my lie-in until 10:15 or 10:30AM. I start my activity time slot with coffee and then I’ll usually either play a card or dice game or go for a walk.

By 11:30AM, my staff leave to prepare my lunch. I usually eat two slices of bread with peanut butter and a cracker with speculoos (Biscoff). I also consume a serving of veg with my lunch. My lunchtime is at noon.

By 12:15PM, I’m done eating and will be on my phone for a bit, reading the news or texting or calling my spouse, who is then usually taking a break.

My two-hour activity time slot starts at 12:45PM. This time slot was originally intended for more time-consuming activities such as a bigger polymer clay project, going out to the nearby town, etc. Occasionally, I’ll use this time slot for cooking dinner for myself and my fellow residents. Often though, I can be found walking grounds with my staff. I’ll end my activity time slot with coffee, although I might also have a cuppa by 1:45PM already.

My staff go into handover at 2:45PM and I’ll most days use up the 45 minutes until my next supported moment with some online activities. By the way, handover doesn’t take 45 minutes, but it’s not like I need one-on-one all of the time.

During my 3:30PM activity time slot, which lasts an hour, I commonly play a dice game. I sometimes also go for another walk. I have unsupported time again for 30 minutes after this while my staff help the other clients with their dinner. My dinner is at 5PM. I am a rather fast eater, so am frequently finished by 5:15PM. My staff have their break at 5:30PM.

At 6PM, my final activity moment for the day starts. I have an activity list, from which I can choose what we’re going to do. What we’ll do, is too often related to the staff supporting me. I really want to change this, but it’s hard.

I’ll have my final coffee at 7PM and then have unsupported time again until it’s time for my late evening meds at 8PM. I’ll most commonly use this time and the rest of the evening for blog-related activities.

Like I’ve shared many times, I usually have Dubbelfrisss in apple-peach flavor with my evening meds. I also will eat a serving of fruit. Then I’ll be told which staff will be in the home the next day. Some days, I’ll hang out in the living room for some time then, while at other times, like today, I’ll head straight back to my room and go online. I used to be phoning my spouse a lot late in the evening too, but now we’ll often talk at other times.

At 8:45PM, I’ll sometimes have a little snack. Then I’ll go online again until my staff come to supervise me brushing my teeth and to close my door to the yard at 9:30PM. After that, the staff will leave the home and I’m supposed to rely on the night staff in the main institution building for support. My fellow residents all go to bed before then, but I’m allowed to stay up. I’m a true night owl, so most days it’ll have been past 11PM before I’m in bed.

All this sounds incredibly boring and unproductive. I really want to put my unsupported time to better use, because currently most of the time I just end up scrolling.

A Recent Frustration Related to My Care

Posted on by Astrid

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.