Gratitude List (September 29, 2023) #TToT

Posted on by Astrid

Hi everyone. This week has been tough, but there’s light at the end of the tunnel. Let me share a gratitude list. As usual, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful for warm and cozy pajamas. They’re probably a size too big and the sleeves and legs are too long, but they’re really snuggly.

2. I’m grateful for warm enough weather that I can still wear short-sleeved shirts during the day.

3. I am grateful for the care home’s side-by-side bike. Unlike my previous care home, the new one has its own side-by-side bike for all residents to use. At my previous care home, one fellow client had one and, though I could occasionally borrow it, that didn’t always feel right. Besides, she is significantly taller than me, so her bike was too large for me. So was the side-by-side bike we sometimes borrowed for my physical therapy. I am, for this reason, grateful my current care home’s side-by-side bike can be adjusted to fit my size.

4. I am grateful for speculoos (known as Biscoff in the United States if I’m correct). I have been enjoying this a lot lately. Which reminds me, I need to locate the recipe for Biscoff brownies I once saw on Reddit.

5. I am grateful for sleep. With the exception of last night, I slept quite well here at the new care home most nights.

6. I am grateful for a productive dietitian’s appt on Wednesday. I am sort of grateful for my weight. I say “sort of” because it’s within the healthy range but lower than my and my dietitian’s agreed-upon lower weight goal. Honestly, there are really just two voices competing in my head: one that says this weight is still healthy so scriew my goals and let’s lose more, and one that worries that something medical is going on because I am not restricting at all.

7. I am grateful my staff aren’t really pushing me to be in the living room more. I am also grateful that I can be there sometimes.

8. I am grateful my staff listen to my concerns about the cuts to my one-on-one support and are trying to make things work as best as they can.

9. I am grateful my old home’s behavior specialist also took my and my mother-in-law’s concerns seriously and is going to inform my current home’s behavior specialist.

10. Most of all, I am grateful for a new day schedule. This looks surprising in light of my previous two points, but hear me out. After both me and the staff raising our concerns, my one-on-one was for now raised back to the level it was at my previous care home. This does apparently mean the care home get less money than they spend on me. I for now dropped my wish to actually see the financial paperwork in detail and will stop moaning about how my previous care home cut my budget and blamed the home in Raalte, which after all is as much a theory as the home in Raalte having spent money they didn’t have. Anyway, with my one-on-one back to the old level, my new assigned staff designed an even slightly better day schedule for me than the one at my previous care home. I now will have a 75-minute activity time slot in the afternoon. This should be enough for a medium-level (for me) polymer clay project. Or for baking the aforementioned Biscoff brownies.

Decisions Made for Me

Posted on by Astrid

Hi all. I’m joining Denyse’s #WWandPics once again. This week, she talks about the letter D words that relate to her, among which “decisions”. I wanted to write about decisions too, but this time, about the reality of decisions being made for you. This may not happen to non-disabled adults much, but it happens to me all the time.

Like with my upcoming move. I know next to nothing about my future care home and, when I told my assigned staff that this frustrates me, she pointed out that I’ll move there anyway so how would giving me more info help?

Honestly, I wish I were given some way to have any level of input into the process. I know the reason the powers-that-be have decided to give me no choice is probably because they feel I’m too critical anyway. They believe I’m looking for the perfect home, which they and I know doesn’t exist given my rather complicated care needs.

They always tell me that I wanted to leave the care facility in Raalte, which was near-perfect compared to my current one. I did, in a way. That is, I wanted to have a discussion with the behavior specialist to explore the possibility of me finding another care home. That’s not the same. And they were the ones not being up front with me about all the things I’d lose if I wanted to live on institution grounds and have fellow clients with whom I could speak. They may’ve technically allowed me to make the decision to move here, but they gave me the bare minimum amount of information to make that decision.

Now they’re not letting me make a decision at all. It makes me feel intensely powerless and that’s a really distressing feeling. And who will be in trouble if my behavior doesn’t improve? Yup, me. Some staff have come to call me spoiled, in fact, so the burden is on me to show them I can handle whatever this new home has to offer. If I can’t, well, too bad, then I either have to learn to live with the decisions made for me or find myself another way to cope.

July 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means it’s time for my monthly reflections. As usual, I’m joining in with What’s Been on Your Calendar? (or #WBOYC for short).

This month was a toughie once again. All I had to keep me going was an E-mail from the behavior specialist at the end of June saying that they were still investigating a possible new home for me, so I hadn’t been forgotten. This didn’t do much to perk me up, honestly. At the beginning of the second week of the month, my mother-in-law E-mailed her to request extra supports. We had been discussing her asking the behavior specialist to come round to talk to me every once in a while to keep me from spiraling further into crisis before, and in fact my mother-in-law had requested it before, but that message had not been responded to. This time around, it turned out the behavior specialist was on vacation till the end of the month. I’m pretty sure given her work schedule, she should be back tomorrow, but even though our E-mail was sent pretty early in her leave, I’m skeptical that she’ll respond then.

Of course, I did find out on the 23rd that a new home has been found for me. Like I mentioned last week, the way I found out about it was rather weird and I don’t know anything about the home other than what my care agency has on its website about it. A moving date hasn’t been set either as far as I’m aware and I won’t be informed till about two weeks in advance. My assigned staff asked me today whether I keep wondering when I’ll be moving. Yep, of course.

In other news, my support coordinator did leave the agency a few weeks ago. I can’t say I miss her, as I can talk to my new one much more easily. Still, I’m glad I’m leaving this place in the hopefully not too distant future.

I haven’t really been crafting much over this past month. The only thing I finished, in fact, is a bracelet with the glass beads I got from my mother-in-law for my birthday. Today, I did finally get round to claying once again. And got my hands all blue from handling alcohol inks without gloves.

I also didn’t walk as much as I did last month over this past month. I honestly don’t really care though.

Since iOS 16.6 resolved the Braille display bug that caused me to be unable to read books on my iPhone, I have been reading more over the past week. I also finally bought a blender, so yay for smoothies!

Here’s hoping August will be a better month than the past few months have been.

Gratitude List (July 20, 2023)

Posted on by Astrid

Hi everyone. I’m feeling like I have really been neglecting my blog. The truth is I’ve been struggling a lot, more so even than I used to. However, today I’m feeling pretty good so I’m taking the opportunity for a gratitude post. Here goes.

1. I am grateful for a fellow resident’s birthday celebration on Monday. Just after handover at 3PM, we all sat in the living room and sang “Happy Birthday” for him. We had fries and a snack for dinner too. Unfortunately, another resident did have a severe anger outburst right after we did the singing and was disruptive for the rest of the evening even when in his room.

2. I am grateful that, though on Tuesday I got the least familiar to the group staff assigned to me for my one-on-one, she was not the least familiar to me.

3. I am grateful for a comforting visit from my mother-in-law on Tuesday. It was good to be able to vent to her.

4. I am grateful for a delicious caramel ice cream bowl that my mother-in-law treated me to on her visit. Okay, my dress once again had ice cream and caramel sauce all over it, but oh well, it can be washed.

5. I am grateful for a satisfying dietitian’s appt on Wednesday. She was really content with my weight (which remains within the agreed-upon range) and my eating and exercising habits. For those who don’t know, I have a history of disordered eating, bordering on bulimia, so I particularly need to make sure my eating and exercising don’t become compulsive (in addition to not engaging in purging behaviors, of course).

6. I am grateful my assigned staff supported me for part of the morning shift on Wednesday despite there being a temp worker too. Granted, the temp worker is quite familiar with the group, but I’d more or less been told that I’d still be assigned the temp worker by default unless there are literally four regular employees.

7. I am grateful for a great experience swimming yesterday. I went into the pool with just a staff and no other residents. This particular staff has this really cool way of getting my playful inner child out, so we sang songs, jumped up and down and had lots of fun.

8. I am grateful my assigned staff agreed to contact the behavior specialist once she’s back from vacation to set up a meeting to discuss possibly finding me help in overcoming my sense of basic mistrust. It’s been getting progressively worse and is affecting my life here at the care home but also my marriage.

9. I am grateful I was allowed to borrow a fellow resident’s side-by-side bike this afternoon. It was a nice change from walking.

10. I am grateful for my spouse, who sticks by me even though I’m being quite difficult. We’ve had a few arguments and I’ve crossed my spouse’s limits a few times. I now realize this is probably my anxious attachment style getting in the way of our healthy communication. For this reason, I’m all the happier to still be going on together.

What have you been grateful for lately?

#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.

TGIF: A Short But Productive Week

Posted on by Astrid

Hi everyone. Today, I’m joining Paula Light’s #TGIF
once again. Paula writes about this being a short week. I almost forgot about that. I mean, we don’t do Memorial Day here in the Netherlands. We have Veterans’ Day, which I believe is on June 29. However, last Sunday was Pentecost and, as with Easter, the Monday after that is called second Pentecost and is an official holiday too.

My week, despite being short, was productive. On Tuesday, I had a meeting with my behavior specialist and a behavior specialist responsible for a possible new care home (or several, I don’t know). They were purposefully vague about the home(s) this behavior specialist is in charge of. Nonetheless, I think the meeting went quite well.

On Wednesday, I was frustrated all day because my Braille display wouldn’t connect to my PC. I thought the problem was the cable, but it wasn’t. In the end, I found out that I had somehow managed to remove my Braille display from within the screen reader’s settings for default Braille display. My Braille display still doesn’t charge properly, for which a technician will come round on Tuesday.

As of yesterday, I am exercising more than I did last month, because I signed up for two challenges in a fitness app called Challenges. Yesterday, in fact, I burned over 500 active calories according to my Apple Watch. Today I’m not yet there, but I did get in significantly more steps. I don’t want this to become an obsession, so I’m making sure I do other activities too. Like, yesterday I created a polymer clay ice cream cone. I later realized that, because I had used white Premo, it needs to be cured at 135°C, but all the other colors are pretty light Fimo soft, for which 130°C is the maximum temperature (and in fact they often darken at this temperature too). I usually cure a Fimo/Premo combo at 130°C and will this time too, but am pretty sure the Fimo colors will be ruined.

This afternoon, my mother texted me asking whether I’d thought about celebrating my birthday (which is on the 27th). If it’s up to her, she’d like for my parents, my spouse and me to go out for dinner. I discussed it with my spouse, who suggested we go to our favorite chicken restaurant, which is about halfway between my parents and Lobith. Or was about halfway between my parents and Lobith, that is, since when looking it up, I found a different chicken restaurant, closer to my parents (so a longer drive for my spouse) and it turned out our favorite chicken restaurant no longer exists. I’m not yet sure what to do now, but I’ll think on it.

April and May 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. In April, I didn’t get to post my monthly reflections because I was too busy with the #AtoZChallenge. Today, for this reason, I’m doing reflections for both April and May. I’m linking up with What’s Been On Your Calendar? (#WBOYC).

Honestly, I don’t remember much of the month of April. It was a really busy month in a way with me participating in the #AtoZChallenge on my blog, which I badly wanted to complete despite struggling with my mental health. In other ways though, it was a boring month, in that I hardly got to do anything creative. I also felt like I had to train new staff almost on a daily basis. By this I mean the fact that, almost every day, the least familiar staff member would be assigned to me and they’d be left with just the instruction to follow my day schedule.

I did work on an activity list detailing steps for each activity I usually do, but this unfortunately didn’t bring me closer to actually exploring creative activities with not-so-familiar staff.

In late April, my mother-in-law sent the behavior specialist an E-mail expressing my distress with the unfamiliar staff situation, as well as with the fact that no-one had told me anything about any progress re finding me a more suitable care home. During the month of May, I’ve had some meetings on this topic, but nothing has been decided yet and I’m pretty skeptical anything will be decided anytime soon. That is, unless the powers-that-be decide no place can be found for me.

Thankfully, I did have the #AtoZChallenge to inspire me. I did, for this reason, write 31 posts.

The month of May was a mixed bag in many respects. It was better than April had been on the care front. This did help me feel better, but it wasn’t like I could actually bring my many ideas for activities into action.

In early May, I went clothes shopping with my support coordinator and assigned staff. That same day, another staff also took me to a nearby lake to go for a walk and take some pictures.


I did over the month of May in particular develop some renewed interests, for example in essential oils. I also still want to buy a new blender, so that I can make smoothies again. However, I haven’t yet decided on one specifically.

I went to my spouse’s and my house in Lobith at least twice during the months of April and May. Honestly, my marriage is stronger than ever and I’m so happy about it!

All this being said, in general I very much feel as though my life has been “on hold” over the past few months. Though I did often feel quite inspired, I didn’t know how to put these ideas into action. I can’t completely blame the care home, but the fact that no matter what the staff here do to improve my situation I’ll never trust them not to mess up again, does contribute.

In the health department, I did significantly improve, at least on those measures I know. I lost weight and currently weigh 57.4kg, which is within the healthy range for my height of 1.53m. I also for the first time today got a cardio fitness level of 25 on my Apple Watch, which is in the “below-average” range (until a few months ago, I was consistently in the “low” range). Next month or in July, I’m due to get my annual bloodwork done and I’m kind of worried about that, particularly my kidney function of course. I do overall feel quite healthy though.

#WeekendCoffeeShare (May 27, 2023)

Posted on by Astrid

Hi everyone. Today, I’m joining in with #WeekendCoffeeShare. It’s been forever since I last joined in with this linky, but I thought I’d share some highlights of the past week with you all. I just had my morning coffee, but am probably going to finish this post after lunch or in my 30 minutes unsupported time before my afternoon coffee. For lunch, I’m just going to drink water, but since this is a virtual get-together, I won’t keep you from grabbing a coffee. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that the weather has been a mixed bag lately. Early in the week, temperatures didn’t rise above 15°C and we had some rain, but today’s daytime high is supposed to be 22°C and the sky is clear. Next week, we’re even supposed to get daytime highs above 25°C.

If we were having coffee, I’d tell you I didn’t really get in as many steps as I’d have liked this week. On Wednesday, I had a bad fall while walking. I hurt my knee and elbow and was dizzy for a bit. Thankfully, I only feel my knee a little now. On Thursday, I only managed a few slow and short walks due to the pain though. I did meet my movement goal on my Apple Watch each day.

For the month of June, I’ve signed up for two challenges on the Challenges app. One is a month-long challenge where points are accummulated based on closing each of your three activity rings, while the other allows participants to choose between basing points on steps or closing of the movement ring (I chose steps).

If we were having coffee, next I’d share that I’ve been pretty paranoid about my support lately. I am finding that I look at everything as a sign that the staff are trying to cut back on my one-on-one support hours. Now they say I get two hours more a day than I formally qualify for anyway, so this makes me feel rather, well, off. I can’t see how I can cut back on my one-on-one support hours as is, but I am pretty sure the staff think I can cope with even less than the hours they claim I qualify for.

I mean, I can cope with about half an hour in the communal room playing a game with a fellow resident most days. Today though, I got overloaded by several different sounds (a staff loading the dishwasher, another resident coming into the room and talking loudly to the staff, etc.). While all of these sounds are to be expected in a communal room (though the staff loading the dishwasher could’ve closed the kitchen door), they did overwhelm me. I managed to keep it together relatively well, but did feel upset that my one-on-one staff of the moment didn’t pick up on the signs that I was becoming overloaded. He claimed I could’ve told him myself and that I was making a big deal out of nothing. This further contributed to my thinking that the staff’s aim is to get me to function in the group without one-on-one. Which, of course, I should really aspire for too, but with how overwhelming even half an hour is in that communal room, I can see this just means being confined to my room alone.

If we were having coffee, lastly, I’d tell you that, on Tuesday, I’m going to meet with a behavior specialist for another care home. Like I mentioned before, I really badly want to move out of this home and my current behavior specialist finally approved this last March. They are currently investigating two possible homes here on institution grounds, but aren’t sure yet whether either will be suitable. Wish me luck with the meeting.

Finally, the Meeting on My Care

Posted on by Astrid

Hi everyone. How is your Friday going? Mine’s okay. Guess what? The meeting between me, my assigned staff, my mother-in-law and the behavior specialist finally happened today. Let me share.

The behavior specialist opened the meeting by saying we needed to discuss how I’m doing now and how things have gone since our agreements at the last meeting. To both, I could give relatively short answers: I’m doing crappy and the agreements led nowhere. Then, my mother-in-law helped me word my wishes for the meeting: to discuss my wish to get insight into my care plan, including allocated extra care hours (what I call “one-on-one” here), and to discuss my wish to start the process of finding a more suitable home. The behavior specialist is going to ask my support coordinator to get me insight into the care plan.

I did go into detail about why I want insight, namely the fact that I keep being told I ask for more than I get funding for. The behavior specialist told me she had heard that indeed the home provide more extra care than they get funding for. Whether this refers only to my one-on-one or to the thirteen hours a day total that there’s an extra staff member, I couldn’t get clear. I was quite worried in the former case, because I really can’t cope with less one-on-one than I get now.

My assigned staff confirmed that indeed sometimes – quite regularly in fact – my one-on-one that I’m supposed to get according to my day schedule is cut short due to for instance another client acting out. She explained that my staff is the first to come to their coworkers’ rescue. This is somewhat understandable, because the other extra care client at least on the surface appears to need her one-on-one more and it isn’t like staff should be beeping for other homes’ staff to come to their rescue when there’s one available right in my room. However, I do suffer significantly from this. Yesterday, due to this situation, I self-harmed twice.

The things I said could improve my care here, according to my staff, weren’t realistic. This is understandable, among other things due to the fact that I am usually supported by temp workers. We might be able to tweak my day schedule and the list of support agreements a little bit though.

Then we got to discuss what type of home I’m looking for being moved to in the long term. My assigned staff is pretty certain that I shouldn’t be placed in another intensive support home, but the behavior specialist didn’t seem so sure. She pointed out that some staff at my old care facility had struggled to support me. She also made it clear that there’s this rigid divide between support and care, where you either need behavioral support or you need a care-based approach. Something inbetween doesn’t seem to exist.

The behavior specialist asked me whether I’d mind having to live in a smaller space, like just one room, not a separate living room and bedroom. I told her I had that at my old care home and considered that room pretty spacious. I know most rooms at care-based homes here on institution grounds are smaller than what I had there, some actually with shared bathrooms. I don’t even mind that, although I’d need a staff to make sure it’s clean when I need to use it.

We also discussed my preference for staying with this care agency, but if this agency doesn’t have a suitable home, I don’t mind moving to another either. I said, and my husband confirmed this when I texted him about it, that it’d be ideal if a new home wouldn’t be too far from where he lives but that isn’t a top priority.

Overall, the meeting went quite well. At least, my assigned staff understood my point of view and the behavior specialist is willing to start the process of finding me a more suitable home. She also admitted she hadn’t realized when placing me here that it’d be as chaotic as it is here.

Thankfully, my assigned staff isn’t going to give up on me. I specifically asked about this, because several staff have been saying things along the lines of: “Why should we even try our best to make things better if you want to leave anyway?” I understand big changes aren’t going to happen if I’m leaving anyway, but then again they aren’t happening if I’m not leaving either. Tiny things that will make my life easier, can still be done though.