#WeekendCoffeeShare (March 25, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s past 9PM on the night before daylight saving time sets in, so no coffee for me. I just had an apple-and-cherry flavored Dubbelfrisss with my meds and a small bag of chips. I normally have those at 8PM on Saturdays, but was upset then. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d complain about the weather. Oh wait, how’s yours? Ours has been rainy and chilly for spring. I want sunshine!

If we were having coffee, I’d share that I’ve been struggling a lot over the past week. I was in a crisis on several occasions. I will spare you all the details but I’m not proud of my behavior. The triggers to my severe outbursts involved disruptions to my day schedule and unfamiliar temp workers being placed with me for my one-on-one support. However, I must admit I’ve been on edge almost all the time even when there were few disruptions to my day schedule. For example, today I got upset because my laundry was put through the washing and drying process twice and this means I haven’t been able to change into my pajamas yet, something I normally do around evening med time at 8PM. In this sense, I understand my assigned staff’s saying yesterday that even if there are no disruptions to my day schedule and I’m supported by super familiar staff all day, I still may get upset. Which, by the way, wasn’t the case today, but we got as close as possible: a familiar staff supported me for half the morning shift and from handover at 3:15PM up till dinnertime at 5PM. For which, by the way, I explicitly thanked said staff. I’m pretty sure I’ll hear that because I got upset at 8PM for a minor reason, by which time a relatively new staff was supporting me, apparently familiarity of staff isn’t the issue. And indeed, there is probably nothing that will prevent me from getting upset altogether, but that doesn’t mean that nothing can be done to prevent the most severe of crises.

If we were having coffee, I would tell you that I finally saw the dietitian on Wednesday. She’s the same dietitian I saw in my old care home. I had a good talk with her and the absolute best news is I no longer need to lose weight! Not that this ever was the goal to begin with, but I was obese when I started my healthier lifestyle journey with her in January of 2022. Now I’m at a healthy BMI. The dietitian made some recommendations for me to change my diet to get me from losing weight to weight maintenance. She’s also trying to talk my staff into getting me to choose my dinners from the meal service menu again, but I haven’t heard about that so either my assigned staff said no or that’s still up for debate. The reason the dietitian is trying to get me to choose from the menu is the fact that I’m quite a picky eater and, when I don’t like something, I’ll usually skip it and not be sure how to replace it. My eating disorder voice also often chimes in, saying that the fewer calories I eat at dinner the better.

If we were having coffee, lastly I’d tell you I upped my movement goal on my Apple Watch from 300 to 330 calories per day. It’s a bit of a challenge to reach it, particularly now that the weather hasn’t permitted long walks most days. I did go on the stationary bike once (and planned on going onto it several more times but you know how it works with motivation to exercise). I did surpass my goal each day though.

The Wednesday HodgePodge (March 22, 2023)

Posted on by Astrid

Hi everyone. I’m joining in with the Wednesday HodgePodge once again. Here goes.

1. Did you celebrate St. Patrick’s Day in some way? If so tell us how. Are you a fan of corned beef? Cabbage? The color green?
No, I didn’t celebrate St. Patrick’s Day. I am not a big fan of cabbage or corned beef, but it’s not like I hate them either. I do love the color green.

2. March 22nd is National Goof Off Day…will you celebrate? Your favorite way to goof off? Last time you had a whole day to spend “goofing off”?
I don’t work and can officially choose my own activities within my day schedule, although a lot of staff will suggest them for me. In this sense, I can “goof off” as much as I like, although it doesn’t often feel like it. My favorite ways to “goof off” would be reading, watching YouTube videos and chilling out with an essential oil diffuser on. By the way, crafting is also a favorite way to spend my time, but since I need support with that, I often don’t feel as playful about it as the expression “goofing off” reminds me of.

3. Something on your to-do list that has been there more than a month? Will this be the month you finally cross it off?
I don’t have a to-do list, honestly.

4. In your opinion, what emotion is the most beneficial? Which one is the least useful?
The most beneficial emotion, to me, is joy. Okay, yes, I copied that from Joyce but I completely agree. I had it as my word of the year last year. The least useful emotion, to me, is bitterness.

5. What was your favorite thing to do as a kid? Elaborate.
Many different things. I enjoyed playing with PlayMobil® until I was at least thirteen. I also loved sitting on the swings in my garden. However, I was also quite nerdy, enjoying geography and drawing maps by hand (obviously not detailed at all due to my severe visual impairment and my poor spatial awareness). My favorite map to draw was that of Italy.

6. Insert your own random thought here.
Just a thought: for those of you who don’t need care, can you imagine what it’d feel like if, each day, five or so different support people, often random strangers, showed up in your home claiming to want to do an activity with you? How about if they felt entitled to ask you personal questions to “get to know you” without disclosing much about themselves (after all, they’re “professionals”). What if, after six months, you’d seen literally over a hundred of them, if not several hundreds? How would it make you feel? I just asked a staff, who is a temp worker here but has supported me about ten times now so I’m supposed to “know” him, this question, after I got very irritated with another temp worker (who’s supported me about five times). The more familiar temp worker seriously replied that he wouldn’t mind who got into his home as long as they’d do the activity with him. I guess this means needing care is too far out of his realm of experience to understand the question.

#WeekendCoffeeShare (March 18, 2023)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s nearly 9:30PM as I start writing this post, so I’ve long had my last coffee for the day. I’m afraid I only have water now. However, as this is a virtual coffee share, you can all grab your own beverages of choice. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d ask about your weather, like I normally do. Ours has been mixed, but usually pretty good. Yesterday and today, the temperature even climbed to 16°C.

If we were having coffee, I would say that yet again I haven’t been as physically active as I’d have liked this past week. However, either my sister doesn’t usually wear her Apple Watch or she isn’t as active either, as we’re “friends” on the Fitness app now and I’m more active than she is according to it.

Yesterday, the support coordinator did take me and two other clients on an hour-long walk, partly through uneven terrain. It was good.

If we were having coffee, I’d tell you I’m still struggling quite a bit. Like I wrote yesterday, we finally had the meeting on my care. It was mostly validating, but the bottom line is nothing will change in the short term.

If we were having coffee, I’d tell you that, because of this distressing situation, I’ve been in crisis quite a few times lately. I self-harmed a few times and today, I actually eloped from the care home and wandered around institution grounds for over an hour before the staff found me. I know this isn’t going to help my chances of going to a less behavior-oriented home, but I really can’t keep myself from spiraling out of control like this.

If we were having coffee, I’d share that I bought another pair of headphones for like €330 and it turned out I don’t like them. I’d been wanting to buy them forever, but they don’t fit comfortably (are too large) and the noise canceling function isn’t as great as the reviewers say it is. It’s going to be returned.

If we were having coffee, I’d end on a positive note by saying today the support coordinator took me for a walk to the coffee bar (I know you English-speaking folks call it a “coffee shop” but I just can’t bring myself to use that phrase) here in town this afternoon. I had a black coffee and a piece of honey-walnut cake. It was delicious!

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.

#WeekendCoffeeShare (March 11, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. I’m very early by my standards, having just had my afternoon coffee. I probably won’t finish this post till early evening though, since it’s nearly 3PM and I’m allowed another activity hour at 3:30. The coffee maker broke down last week. Then we got a new one yesterday – a really fancy one that can work with beans -, but it broke down today. Thankfully, the Senseo coffee maker still works. Let’s have a drink and let’s catch up.

If we were having coffee, I’d first ask about your weather. We got snow this week. Like actual snow that remained on the ground. Yesterday was cold and snowy and icy. The rest of the week was mostly cloudy with some rain. Today is okay. We even got a little sunshine and the temperature climbed to 7°C.

If we were having coffee, I would tell you that I finally decided to contact an independent client supporter re my care situation on Tuesday. These are not affiliated with the care agency, but can help clients with their care plan or finding the right care. The person I spoke to on the phone, asked me a few questions and then would forward my info to a client supporter for my area. This person called me on Friday and we’ll have a phone appt on Wednesday. Unfortunately, somehow, her E-mail confirming the appt and giving me her details didn’t reach me, so I’m going to call her on Monday to let her know.

If we were having coffee, I’d let you all know I’ve decided a whole lot needs to happen if I want to actually stay at my current care home. After all, like I didn’t yet say in my previous coffee share post as I didn’t know back then but have written about since on the blog, the meeting between the behavior specialist, my assigned staff, mother-in-law and possibly me got canceled again on March 2 and has now been set for this coming Tuesday. Apparently, my support coordinator won’t be attending. However, since my last mentioning that I saw some potential for it to work out here and now, I’ve had a few really hard conversations with my assigned staff. These conversations made me feel as though there’s little or no room for improvement. In one of our last ones on my care situation, in which I’d pointed this out, she suggested I go back to living with my husband. This would have been an understandable question from someone who has no clue about my care needs. I’m in fact half expecting this question from the client supporter too. However, my assigned staff should know better. The fact that she – one of the staff who’s most accommodating to my needs – asked this question, to me underlines the fact that this care home’s staff are either clueless or careless about my needs, possibly both. I mean, she meant well and didn’t mean to push me. She said that, while living with my husband would no doubt be hard, so is living here for me. Her reasoning also was that, if she were to marry someone, she’d do so with the intention of living with them. Well, our intention for marriage was to prove to each other that we want to remain a couple for life, nothing more, nothing less.

If we were having coffee, I’d share that once again my exercising has declined over the past week. I in part blame the weather. However, yesterday I took up the courage and went up to another client’s room to ask her and her staff whether I could go on her stationary bike. Turns out it’s not her stationary bike at all, but the home’s. I went on the bike for only eight minutes (and four seconds, to be exact 😉). Today, I did go for two longer walks, totaling 73 exercise minutes on my Apple Watch.

If we were having coffee, lastly I’d tell you I’ve picked up soap making again. My soaps aren’t great so far. I made a simple butterfly soap on Thursday fragranced with lemon and pink grapefruit essential oils. Yesterday, I made another butterfly with lavender and ylang ylang essential oils, but decided to add some mica powder too as a colorant. However, I had no idea yet how to add micas to melt and pour soap, so messed it up quite a bit by adding way too much mica and also adding it to a white rather than clear soap base, among other things. I guess one never stops learning.

How have you been?

Hello Monday (March 6, 2023)

Posted on by Astrid

Hi everyone. A few weeks ago, I discovered another great weekly linky called Hello Monday, in which bloggers share about their weekend. Since I didn’t join #WeekendCoffeeShare this past Saturday, I still have a lot to share about the weekend. Besides, Sunday afternoon was fun, so even if I had posted on Saturday, I could post again today. Let’s get started.

Saturday morning was kind of hard. A new staff was being introduced to me, so for the morning shift there were two staff people doing my one-on-one. I do appreciate the fact that they actually had him properly introduced to me rather than having me do all the explaining, like they did with the student staff, but it did lead to me overhearing them converse about stuff that they said wasn’t my business. Well, if it’s none of my business then why discuss it in my room with me sitting right there in the middle?

Saturday evening was slightly better, but Sunday morning was hard again. The staff assigned to be my one-on-one that day always complains of a sore arm when holding my arm to guide me when walking, but I can’t safely walk without a sighted guide and I struggle to hold onto someone’s arm too (which is the proper way of walking sighted guide). In this sense, I empathize with this staff. Being that he isn’t the crafty type either, we were quite limited in the activities we could do, so I eventually decided we’d go for a walk anyway.

After he left at just past eleven for my “time to rest” (his cringe-worthy term for time without one-on-one support), which normally doesn’t start until 11:30, I indeed had a little lie down, but had had it by 11:30 and decided to go into the living room to see the other clients and staff. I sat there while they had lunch (and I had a little bit too). I was going to have a visit from my husband at 1PM and we usually go out for lunch then. One of the staff directed us to clear up the table, while she herself remained seated. Granted, she was another client’s one-on-one and either that client can’t or won’t clear up. I can’t without someone assisting me either and my one-on-one was nowhere to be found, but thankfully another staff helped me.

When my husband came to pick me up, he drove randomly. At one point, he asked me where we were going. “Where are we?” I asked. He replied we were at highway A50, headed northward, in the middle of nowhere. Zwolle was the closest bigger city, so we decided to head there. We went to Ikea, where we looked around a little, tthen had fries with chicken (for me) and meatballs (for him). Then we saw these really cute soft toys. My husband pointed out an orangutan, which I immediately decided to buy. My husband wants me to name him after the monkey king in The Jungle Book and he wanted me to look up the song on our way back to the institution. Not that I remember that movie. I mean, I’ve probably seen parts of it, but we only had public television at home when I was a child. I think the monkey is called Louis.

February 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means I’m reflecting back on the month that was. Like last month, I’m joining What’s Been On Your Calendar? (or #WBOYC for short).

The month of February, overall, was slightly better than the month of January. This was reflected in nineteen (including this one) blog posts in 28 days, compared to only thirteen in 31 days last month. However, it wasn’t “good” by any means.

On the 14th, we were supposed to have a meeting about my care, but this was postponed because my support coordinator was off sick. It has now been set for this coming Thursday but my assigned support staff told me it may need to be postponed again.

The last few weeks were okay care-wise and there were even a few days when I received optimal care by this home’s standards. On Friday, I told my assigned staff I might not want to leave this home after all, which she translated to my having decided I don’t want to leave. On Monday I tried talking to her about improvements that would make my life better here, but this led nowhere. Now I’m pretty sure that, since any attempt on my part to talk about improving my care situation leads to “but you can’t expect continuous one-on-one” before I’ve even stated my wishes, I’ve pretty much lost trust in everyone for good. And just so you know, this wasn’t my first attempt to talk about improving my care.

Craft-wise, I didn’t do as well as I’d hoped. I gave up on The Artist’s Way after barely a week and I didn’t expand on my creativity as much as I’d have liked. I was, however, invited to help decide on the monthly theme in the Dutch polymer clay Facebook group, which became “Unicorns” of course. Like I more or less expected, I was the only one contributing, but oh well. At least for once I could participate.

I did read a lot more than I’d expected in the past month. I have been reading more diversely too. This is related to the fact that I had a discussion with my husband a few weeks ago about queer identity.

Also due to said discussion, I decided to finally abandon Christianity. I’ve been struggling with my faith ever since becoming a Jesus follower at the end of 2020 and part of the reason is my queer identity. And just because I’m happily married to a man, doesn’t mean I need to disown that. I could, of course, still call myself a progressive Christ follower, but who would I be kidding then? If the God of the Bible exists, I’m going to be condemned whether I follow Him half-heartedly or not at all.

In the health department, I’ve been doing pretty well. My cardio fitness level is improving and is almost at below-average level rather than low. I also lost 2kg over the month and only need to lose just over 1kg to be at a healthy BMI. I haven’t heard what the institution nurse said yesterday about the cream not working for the burning sensation on my back.

Lastly, I bought a new computer last week, which I’ve now been using for a few days. I’d been dreading Windows 11 for years due to my fear of the unknown I guess, but it works quite similar to Windows 10.

#WeekendCoffeeShare (February 25, 2023)

Posted on by Astrid

Hi everyone on this last Saturday of February. Can you believe we’ll be rolling into March this coming Wednesday already? I definitely can’t!

I’m joining #WeekendCoffeeShare today. I just had dinner, but probably won’t finish writing this post until after my evening coffee at 7PM, since it’s 5:45 and I have one-on-one for an hour in about fifteen minutes. I’m reminded, as I type this, that the other clients’ evening coffee got moved to 7:30, so I’m afraid you’ll have to be content with a Senseo coffee (and so do I). Let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking about your weather, as usual. Ours has been mostly cloudy with some drizzling, but today it’s been sunny at least during the afternoon. Daytime temperatures rose to between 7°C (today, the coldest day of the week) and 11°C earlier in the week.

If we were having coffee, I would tell you that I didn’t do as well with my walking as I’d done last week, but on Tuesday, I did register 124 exercise minutes in a single day, all by walking. It wasn’t a record by any means, but it was the best I’ve done since moving to my current home.

I’m also trying to up my walking speed, because as of this week, I can see my trends on my Apple Watch and this is the downward trend that my Apple Watch claims is the easiest for me to turn around quickly.

If we were having coffee, I’d tell you that I’ve had a pretty good week in the care home overall. So much so, in fact, that, like I said yesterday, I’m not 100% decided I want to leave this home anymore. A lot depends on the outcome of the meeting with the behavior specialist, my support coordinator, assigned staff and mother-in-law next Thursday. In particular, I’m going to inquire about their ideas for me regarding day activities. Ideally, I could work towards going to a day center with part-time one-on-one support. After all, I’d really like to focus on having some actual day structure rather than having “time to rest” (some staff seriously use that term for my unsupported times) every hour at least.

If we were having coffee, I’d share that I asked my assigned support staff to contact the doctor about the burning sensation on my back that I’d mentioned on Wednesday. The way things work here, she had to contact the institution nurse first. The nurse recommended we try some cetomacrogol cream. I think it might indeed be my eczema acting up again. To be honest, the cream isn’t really helping yet though.

If we were having coffee, lastly I would share that my laptop started acting up a little last week, so I ordered a new one. My old one, which I’m still typing this post on, is over 3 1/2 years old and has been used a lot during those years, so really it’s not at fault. The new one has Windows 11 on it, which I’ve been avoiding installing on the old one (assuming it could be installed at all). I really need to look into the differences so that I can familiarize myself with the new operating system before this laptop completely dies. Going to do that now, okay?

How have you been?

TGIF: Optimal Care?

Posted on by Astrid

It’s Friday and this means Paula Light is rambling on in her TGIF post. I don’t join in each week, but today, I’d like to.

Today, I received optimal care as per my current care home’s standards. That is, my day schedule wasn’t disrupted and I had one staff member for the entire shift both morning and evening. My assigned staff says this means I’m lucky. I considered myself lucky this morning indeed, since one of the regular staff was my one-on-one staff while two temp workers were supporting the other clients. My staff for the day explained that one of the temp workers knew the other clients pretty well and he’d never worked with me, so it was decided that he’d do his shift supporting them. This, indeed, does make me feel fortunate.

However, with respect to the day schedule, I still feel that it could be better. And I don’t mean with me receiving quantitively more support. I mean that I’d like longer support times and fewer but longer times without support. I also probably want to work towards going to a day center.

I’m probably going to insist I’ll attend the meeting with the behavior specialist, support coordinator, my assigned staff and my mother-in-law next week. In my opinion, given how it’s been going over the past couple of weeks – better than before -, I’m not dead set on leaving this home as of yet. However, I do need to make sure that there’s going to be at least some room for improvement on the part of my care home. Judging from my staff’s comments, I’m pretty sure there isn’t and in fact they want me to adjust to less and less suitable for me care.

#WeekendCoffeeShare (February 11, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. As usual, I already had my last cup of coffee for the day, although I’m earlier writing my post than I was last week. I do have Dubbelfrisss, a slightly carbonated drink. The staff probably also have various kinds of soda. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d ask how your weather has been. Ours has been mostly sunny and not too cold. Today, the daytime temperature even climbed into the double digits and I wore my slightly less thick coat. Is there a word for that in English? In Dutch we call it a “tussenjas”, which literally translates to “in-between coat”.

If we were having coffee, I’d share that I’ve been doing lots of walking over the past week. I loved it! I probably didn’t manage as many steps this week as I did last week, but that’s okay.

On one of my walks across institution grounds today, the staff spotted butterflies and flowers painted on the path. I couldn’t resist the urge to take pictures.


If we were having coffee, I would also tell you that I took a trip to the next town to go to Action, a discount store. I originally intended on just buying T-shirts, but ended up buying a lot more, as usual when I visit that store.

If we were having coffee, I would tell you that my staff have been doing my hair several times this week. Today, my staff did a ponytail. On Thursday, the staff created two braids. I loved that look so much that I asked her to take a picture of me.

If we were having coffee, I’d share that I’ve been obsessing over creating my own breakfasts. I’ve been looking into making overnight oats and smoothie bowls. This afternoon, when I told the staff about the idea, we tossed around ideas and finally decided to create a basic smoothie that evening. It just had non-fat vanilla custard, milk and banana in it, but it was delicious.

If we were having coffee, lastly I’d announce that my support coordinator invited my mother-in-law and assigned staff to a meeting this coming Tuesday. I have no idea whether I’ve been invited too or what the goal for the meeting should be if I haven’t. I’m still pretty distrustful of this support coordinator and still feel this home isn’t suitable for me, even though the last couple of days have been okay. The reason that I still feel this home isn’t suitable is because it seems to be sheer luck when a day goes okay. I still wish to make it work, but I’ve pretty much lost hope that this home can truly provide what I need.