In an Ideal World

Posted on by Astrid

In an ideal world…
I’d get all the care I needed,
From all staff I trusted.

I’d be able to engage
In activities I enjoy-
Crafting, baking, walking, swimming.
Without a care in the world.

I’d live closer to my spouse
If not together.

Sigh…
In an ideal world…

This post was written for Sammi’s Weekend Writing Prompt, which this week is “ideal”. I realize that my dreams for an ideal world are a bit childish and rather self-centered. The piece was based on the thing I at one point told staff at my old home: that, in an ideal world, I’d get one-on-one all day long. This isn’t actually true, since I need alone time to read and blog and phone my spouse, for instance. However, I do feel there are ways in which my care could be improved. Some of them might be realistic, while others fall into the category of “in an ideal world”.

#WeekendCoffeeShare (September 16, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. I just had my afternoon coffee, but will probably not finish this post in one go, as I have an activity moment again in half an hour. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. We’ve had pretty nice late summer weather here with temps rising to between 20°C and 25°C during the day. Next week, we’re supposed to get rain and then I’m pretty sure it’s over with the warm weather, although October can occasionally bring days when the temperature reaches 20°C too. I love telling tales of the day, about five or six years ago, when we had a daytime high of 27°C here in mid-October.

If we were having coffee, then I’d talk about my walking and other exercise. I went swimming on Wednesday. It’ll probably have been the last time for now, as I’m moving to the new care home on Monday, although the swimming instructor did say my new home’s clients go swimming too.

I went on the stationary bike yesterday. Other than that, my physical activity has been hit and miss. Some days, I got in over 10K steps, while on other days, I hardly walked at all.

If we were having coffee, I would however share that, on one of my walks, last Tuesday, I visited the institution petting zoo and took some lovely pictures. The first picture shows the petting zoo’s cat, Macho, on a stack of hay.

There also is a large aviary with parakeets in it. Here are two photos of the birds in their cage.


If we were having coffee, finally I’d tell you all about my visit to my new care home. I went there with a staff and my mother-in-law. Since this staff has been pushing me towards independence more than I can handle lately and since she’ll be doing handover too, I was disappointed that she’d be attending the visit too. After all, that’d mean I wouldn’t be able to talk to my new staff about my needs without her overhearing.

When we got to the home, we were greeted by the man who will be my new assigned staff, same one who’d been talking to my mother-in-law about the color paint on my wall. I had thought he’d be my support coordinator but apparently not. I don’t know who my support coordinator will be yet. Not a problem, since in general you have more day-to-day contact with your assigned staff than your support coordinator. When still outside, I heard a loud singing of “Happy Birthday!”. This turned out to come from the neighboring home though, as no-one had a birthday this day.

We were led into the living room, where a number of residents and another staff were having coffee. I initially thought there were two staff, since one of the residents talked in an almost identical voice and said almost the same things as the staff. This turned out to be echolalia though.

The residents in this home are more significantly intellectually disabled than those at my current home. Most can speak a little though. Like, one told me I had a pretty golden ring. When I told my spouse about this, I was reminded of my preference last year for a home with people with mild intellectual disability. Yeah, I replied, but I didn’t know back then what I had to give up to live with people with whom I can have a conversation.

Overall, the staff seemed much nicer than those at my current care home. For one thing, both staff introduced themselves, while back when I went to look around here last year only the staff who would be giving me the tour told me their name.

I was led to my room, which is the closest to the living room. This has disadvantages, in that I may be able to hear living room sounds more, but it has a huge advantage in that I will be able to find it much more easily than my current room. The wall is a nice baby pink according to my mother-in-law. I wasn’t able to get a real impression of my room without my furniture in it yet, but that’s not a problem.

When shown around, I did make it clear what my needs are re help with my activities of daily living and that I’m not ready to grow yet, since that will take me being stable first. The staff who was with me didn’t comment, thankfully. Overall, I feel less stressed about moving to the new home now that I’ve met my new fellow residents and staff.

I have yet to pack my clothes. Other than that, everything is in boxes now and ready to be moved. I’m ready for a new chapter in my life!

My (Second) Favorite September Memory

Posted on by Astrid

Hi everyone. I want to write, but honestly don’t feel like sharing about all the stressors of the last few days in my current care home. Instead, I decided to draw inspiration from Marsha’s 10 on the 10th post again and share one of my favorite September memories. My favorite of all time is of course my wedding date in 2011, but I’ve written tons of posts about that already I believe. So I’m going to share about my other favorite memory. This is only a favorite memory in hindsight, as it was intensely stressful back then. I refer, of course, to my moving into the care facility in Raalte on September 23, 2019.

I arrived in Raalte at around 1PM, which was a bit earlier than I’d agreed on I believe, but the staff who would be showing me round had just arrived. She showed me my room and let my spouse move my furniture into it. I remember we had some discussions about things that had to be agreed upon. My spouse clearly stated that I couldn’t manage my own meds, as I’d taken two med overdoses when living in our house. The staff had been kind enough to mark the door handles of my room and the living room with tape, so that I could recognize them by touch when wall-trailing.

I also got a short tour of the day center, that is, the group I’d be attending. I remember they had a hand-made banner with “Welcome, Astrid!” on it. The guy who came here in crisis last November also got a welcome banner, but I got nothing when I got here.

In the evening, when the other clients got home from the day center, we had dinner. After that, one of the staff said she was going for a walk with one of my fellow clients. I was tempted to ask whether I could join them, but can’t remember whether I did.

I remember feeling quite a bit in shock when first coming to this care home. I asked my spouse: “You don’t think it’s all stupid, do you?” I referred to the fact that the other residents were severely intellectually disabled. Maybe I’d also noticed the poo smell. This was one of the first things my spouse asked me about when I went to have a look around my current care home. Truthfully though, I don’t care about poo smell if I get proper care.

August 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month, so it’s time for my monthly reflections. Overall, August was slightly better than July, but it’s still been quite a tough month. Honestly, it’s been quite a tough year so far.

My spouse’s car broke down a few weeks ago, so we weren’t able to see each other each week this past month. Last Sunday, though my spouse did visit me, it was in my mother-in-law’s car. Thankfully, the car has been fixed for now.

My mother-in-law also only visited me once this past month despite there being five Tuesdays in August and her normally visiting me every other Tuesday. On the 1st, she had to work and on the 29th, a new horse was delivered. The story behind her having gotten a new horse is a bit sad, in that one of her horses, Remco, passed away suddenly last month. I mean, he was already crippled, so could only step around a bit, but still his death was unexpected. The new horse is a young mare called Marrit.

Now on to my own life. It’s been boring. I’ve been mostly waiting to find out more about the move. Last Sunday, my support coordinator told me that I’ll move within six weeks, probably sooner. I honestly have mixed feelings about the whole thing. Obviously, I try to remind myself it can’t be worse than here, but what if it isn’t any better either? Will I be expected to magically flourish there just because it’s not this home? I’m hoping, of course, that I will eventually flourish, but this isn’t going to happen magically. Indeed, this requires work, both on my part and on the part of the staff.

I also, like I mentioned yesterday, have had an increase in flashbacks to my childhood trauma. Of course, I could hope this will lessen when (if?) I’m in a calmer environment, but still I’m pretty sure they won’t disappear without support.

In the health department, I’m doing pretty well. I had a meeting with the dietitian yesterday and she asked me not to lose any more weight. I’m not sure how to do this, truthfully, as I’m eating well overall. There’s also this thought at the back of my mind telling me that I could still lose 10kg and be at a healthy BMI. Besides, I still have quite a lot of abdominal fat and watched some YouTube videos a while back that mentioned the dangers of internal obesity. Then again, the dietitian told me there’s very little I can do about this. The YouTube videos tell me otherwise, but then again my healthy voice is telling me (or at least I’m assuming it’s my healthy voice) that following those YouTubers will just lead to extreme restricting, which will probably just cause me to relapse into bulimia. I’m still struggling intensely with all the things diet culture tells me about what to eat and not to eat to preserve my health and, at the same time, my dietitian has one foot right inside diet culture as well. After all, my food plan was a classic weight loss plan up until I reached a healthy BMI. Heck, the very fact that I mention the BMI here shows how much I’m into diet culture. I want to unlearn this, but I’m not sure how.

With respect to other health factors, I’m doing okay. I walk more than I did in July, have been swimming again and went on the stationary bike occasionally. That being said, I do worry about a decline in my mobility. This could be the YouTube videos again, which told me a loss of arm swing could be a sign of overall decline. I have absolutely no idea whether my arm ever swung at all though. That being said, my drop foot seems to be getting worse too.

I did finally get the eczema on my legs treated. I also got a slight infection on the skin of my earlobes, where I had my ears pierced in early July. I’m currently on a course of an antibiotic ointment, so hoping that’ll work.

In the crafty department, I haven’t been very active. I did create a lot of unicorns out of polymer clay, but they were all done using cutters, not sculpted. I intend to paint them and use them as gifts for my fellow residents when leaving this home.

I’m linking up with What’s Been On Your Calendar? (#WBOYC).

Poem: Home Is…

Posted on by Astrid

Home was
At my parents’
Who were there and yet weren’t there for me
Hurting me in ways I feel I can’t express
It wasn’t safe
Or maybe that’s just me

Home was
On my own
Barely holding on by a thread
Surviving but that was about as far as it went
It wasn’t doable
Or maybe that’s just me

Home was
In the mental hospital
Where I stayed for nearly a decade
Only to be kicked out again
That wasn’t forever
And that wasn’t me

Home was
With my spouse
Again, barely holding on by a thread
Managing life by sleeping and panicking
It didn’t work out
But maybe that was me again

Home then was
In the care facility in Raalte
About as unsuitable as they come in theory
But it was near-perfect in reality
And yet, I left
And that was me (sort of)

Home then became
My current care home
With harsh staff, chaotic clients and poor quality of care
I wasn’t abused (not really), but that’s about as far as it goes
It doesn’t feel safe
But then I wonder, isn’t that just me?

Maybe soon home will be
The future care home
The big unknown
Will I feel sort of happy there?
No-one can tell
But it’s up to me

To make myself feel at home

This poem may sound a bit self-loathing. It isn’t intended this way, but I couldn’t express as concisely how I feel about my various “homes” and particularly the way people have told me I approach them (ie. the idea that I’m never satisfied anyway because I’m looking for perfection) without sounding this way. This is definitely not my best poem, but oh well, it shows my conflicting feelings about the fact that I’ve never felt “at home” anywhere.

I’m joining dVerse’s OLN. I’m also joining Friday Writings. The optional prompt is “muscle memory”. I guess repeating that I don’t feel at home anywhere counts.

Choice of Residence

Posted on by Astrid

Hi everyone. Today’s topic for Sunday Poser is how or why you chose your city, county or area of residence, or whether it was a choice at all.

I stumbled across my current care agency by chance in 2017 when trying to find day activities for once I’d be discharged from the psych hospital. After going to two different day centers with this agency and coming to the conclusion that living semi-independently with my spouse was not a viable option in the long run, I moved into the home that had a place available at the time. That’s the short version of how I ended up in Raalte.

Since knowing about this agency, I always envisioned myself living on its institution grounds. I thought I’d feel more sheltered there. This was one of many reasons I requested to look into the possibility of finding me another care home in April of 2022.

Wilp, the institution town (I’m pretty sure I mentioned it before so I might as well tell you rather than remaining vague) is right in the middle of the tricities Apeldoorn/Zutphen/Deventer. I think the town itself has a little too little to offer for my liking, since it only has a bakery and a coffee corner and that’s basically it. However, all three cities are within easy driving distance and Twello, the neighboring town, is within cycling distance. It’s too bad our home doesn’t have a side-by-side bike.

Since I grew up in Apeldoorn, I am sort of familiar with this area. Not in the sense of knowing my way around – I’d never even heard of Wilp before finding out about this care agency -, but in the sense of knowing the culture. It’s not necessarily my type of culture – a bit too conservative for my liking -, but I am okay with it.

The institution I live in is great. No, not the home, of course, but I love the petting zoo, on-site swimming pool, various day centers, etc. The fact that residents and staff all greet each other, is also awesome. It’s really like a small village in itself. And indeed, it’s more sheltered than community living in Raalte was. One drawback I need to mention though is getting mail delivered. Particularly packages cant be sent here. Ah well, I’ll get them sent to my in-laws and get my spouse to collect them and bring them here on Sundays.

Hello Monday (August 7, 2023)

Posted on by Astrid

Hi everyone on this first Monday of August. How are you all? Let me share about my weekend. I’m also sneaking in a bit about today, because I don’t think I can devote a separate blog post to the topic and it needs talking about anyway. I am joining in with Hello Monday.

Saturday started out pretty good. My assigned staff came to do my one-on-one for the morning. My schedule did get somewhat distorted because she came up with the idea of us clearing out my wardrobe. I didn’t mind at first, but I didn’t realize until it was too late how overloading this was.

Then eventually, after having had a shower, getting dressed and having had breakfast, I realized I’d forgotten the steroid cream I’d been prescribed for my eczema. I asked my assigned staff to help me apply it. “I’ll show you how, then you can do it yourself,” she said. Fair enough, you might say, but by this time I was well and truly overloaded. I sighed, to which my assigned staff made a comment about me being a “big girl” and that I could stomp my feet all I wanted (I didn’t). Once she got down to showing me how to apply the cream, she kind of curtly told me to relax my hand (which, well, having mild cerebral palsy, I simply can’t), then asked why I can’t. I got quite thick layers of cream on some parts of my skin and nothing on others, but in the end it didn’t matter, as the cream she’d grabbed was the oily lanette cream rather than the steroid. I do understand my staff meant well, in the sense that she’s trying to encourage independence. However, I often don’t realize how overwhelmed I am until it’s too late and at that point, any further demands will lead to me shutting or melting down.

Saturday evening was pretty good. We had home-cooked macaroni for dinner, which I loved! I actually was allowed a second helping.

On Sunday morning, my one-on-one arrived 25 minutes late, claiming it was only 15 minutes and that it just was what it was and deal with it. Then at lunchtime, she wouldn’t leave my room after I’d finished my drink (I wasn’t eating because I’d be having lunch out with my spouse), claiming she was making up for the time she’d been late in the morning. Well, it isn’t just sitting in my room that helps me. If she could’ve taken that time to help me with an activity that needed doing rather than just “chilling”, that would’ve been appreciated, but she couldn’t.

Thankfully, my spouse arrived around 1PM. We drove to Apeldoorn once again and, after a stroll around the city, decided to have lunch at Backwerk once again. I had the same old chicken barbecue baguette. Hema was closed, so we just had a drive around, then stopped by Aldi in the town next to where my institution is (I’m pretty sure those who live in the Netherlands know which town I’m referring to, if I haven’t shared it already). I wanted to get some nuts and Tuc (a kind of salty biscuit), which my dietitian allows me to snack on later in the evening. My spouse also got apricots, so I also bought those. And of course the perpetual Kinder Bueno. Then my spouse drove me back to the institution.

Once there, it turned out one of the staff had car trouble, so didn’t arrive till 4:30PM. Of course, it was my one-on-one that got cut. One of the other staff made it sound as though they were buying us French fries and a snack to make up for it, which I considered rather lame. Then after we’d finished our fries at 4:50, the staff informed me bluntly that my day schedule would be followed from there on, so I would have one-on-one again at 6PM. I felt this was ridiculous, but had no choice, as the staff were using stupid emotional reasoning to get me to agree with them.

In the evening, I did show my one-on-one how to make beads out of polymer clay.

Now on to my cheating by sharing a bit about today: this morning, my support coordinator informed me that he was going to attend the team meeting for my new care home to answer some questions about me, but that he thought I could answer those questions perfectly well myself. I agreed and went with him. Some of the questions made me feel a little uncomfortable.

The first question I got, in fact, referred to my drinking excessive water. That happened exactly once and was an impulsive act. I decided to broaden the topic and explain about my preference for how staff deal with my impulsive or self-harm tendencies, ie. by not giving more attention than needed to the behavior but to stay supportive of my emotional needs. I did forget to mention that wounds do need to be checked, something that doesn’t always happen here.

Overall, I mostly felt validated, in the sense that at least the team didn’t respond negatively to my comments. I did find it hard to walk the fine line between being too bluntly honest about my needs and delivering a sales pitch of myself. I hope I did okay though.

Dromaai: A Restaurant That Brings Me Nostalgia

Posted on by Astrid

One of today’s prompts for Mama Kat’s Writer’s Workshop is to share about a restaurant that makes you nostalgic. I immediately thought of the restaurant in Nijmegen my spouse and I nicknamed the “dromedary”.

Its real name is Dromaai, which is wordplay on the Dutch word for turnaround. On the menu are various dishes where letters have been switched up. For example, fish stew would be called “stish few”.

I discovered the restaurant while in the psych hospital in the spring of 2008 and ate there with my family a few times. Then, in December of that year, I invited my now spouse there.

My spouse and I would see each other several times a week while I was in the hospital, often around dinnertime, and there wasn’t any food for my spouse in the hospital, of course. As a result, we had to eat out. Dromaai became a regularly-visited restaurant. My favorite dish was marinaded turkey on a skewer. I usually chose pepper sauce with it rather than the recommended BBQ. You could choose between a side dish of rice, baked potatoes or fries. I usually chose fries, but I did like the potatoes too.

In 2011, my spouse convinced me to try to become a vegetarian, so my favorite dish became a vegetable wrap. I gave up the vegetarian lifestyle after only about nine months and came back to my turkey skewer.

We stopped going to Dromaai when I moved to the psych hospital in Wolfheze in 2013. That is, we still went there occasionally. One time, I remember one of the workers – I think he actually was the manager or something, but he also did waiter jobs – asking us whether we’d moved and if so, where. I vaguely replied that we’d moved to the Arnhem area. “Arnhem, blegh,” he replied with a laugh, because as those from the Netherlands will know Arnhem and Nijmegen are rivals.

The last time I went to Dromaai, I went with my sister after our day at Sanadome, a wellness resort in Nijmegen, in 2018. I looked all over the menu, but to my annoyance, they’d done away with the turkey skewer. I ordered mixed grill instead, but didn’t like it nearly as much.

As a side note, don’t ask me how my spouse and I got to nickname Dromaai, “Dromedary”. My spouse has a habit of taking wordplay to the extreme though. I think it’s funny, but I realize it isn’t as I type this down now.

Mama’s Losin’ It

Hello Monday (July 24, 2023)

Posted on by Astrid

Hi everyone. I’m joining Hello Monday for a weekend recap. The weekend was a true mixed bag, but those who know how much I’ve been struggling please do read on till the end for some exciting news.

Saturday was a truly crappy day. I got a total stranger as my one-on-one for the morning. This is not unusual, but the crappiness started as soon as I voiced my discomfort with her being a total stranger. Rather than try to comfort me, she was like: “What about if I leave you alone till coffee time?” Coffee time is at 11AM and it was just past 10AM. I said no, because despite what the staff here seem to think my one-on-one isn’t a mere suggestion. Fifteen minutes later, she was like: “I haven’t had breakfast yet. I need to grab some food, see you at coffee time, okay?” I went to the communal room, where my assigned staff happened to be, who set this straight with my would-be one-on-one. After that, we played some card games, had coffee and then she quickly decided to swap places with another staff. He’s not a stranger. Not someone I get along with, but at least I know what to expect of him (which is very little, to be honest).

In the evening, there was a staff shortage until 6PM and of course I was asked to come to the communal room to unburden the staff (his literal words). Then I got a staff I barely knew once again and only could play card games once again.

Sunday was better. I did get an unfamiliar one-on-one in the morning, but at least my spouse came by for a visit. We once again drove to Apeldoorn for lunch at Backwerk and hopped into Holland and Barrett for some essential oils. My spouse got a discount card even though we rarely shop there.

In the evening, my new support coordinator – did I share my old one left the agency a few weeks ago? – was my one-on-one for an hour. We went for a walk and discussed some aspects of my care, both unaware of the E-mail landing in my inbox at 7PM. My mother-in-law had forwarded it to me. It was originally sent to her at 11AM that morning. The subject line read something like: Painting Astrid’s new room.

The E-mail started with something like: “I am [name], support coordinator for Astrid’s new care home, [home].” The person writing the E-mail then went on to tell my mother-in-law that, when moving, a client can have one wall in their room painted in a desired color, and which color would I like?

I had heard my assigned staff mention this home among the possible homes considered for me, but I had absolutely no idea I had been accepted into it. I don’t know anything about the home other than what the care agency’s website says, which isn’t to be trusted due to the fact that they make things look better than they are. However, it isn’t really like I care. Any small improvement over the care I receive here is greatly appreciated.

Today, I confirmed with my support coordinator that I am indeed moving to this home. When the move will be, is not yet known for sure, but I’ll find out about two weeks in advance and be able to take a look around a few days before the actual move.

And for those who are wondering, I chose lilac as the color for my wall.

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?