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.

#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.

The Wednesday HodgePodge (February 22, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday again so I’m joining the Wednesday HodgePodge. Here goes.

1. What do you find is the most boring part of your life at the moment?
There isn’t anything extremely boring about my life, but my life isn’t exciting either. I’d say the thing that makes my life a bit boring is the fact that, due to the way things work at the care home, I can hardly make plans.

2. February 22nd is George Washington’s birthday. You’ll find his face on the US $1 bill. What’s the last thing you bought for roughly $1.00? (.94 €/ .83 £)
I honestly can’t think of anything. I do probably have some cash in my wallet but rarely if ever use it. I also hardly ever go into a store just for something that costs like $1. The closest I could get, when I checked my recent purchases on my bank account, is €1.35 for a box of tissues, but that’s not roughly $1 I’d say.

3. Is it ever okay to tell a “little white lie”? Explain.
It’s never really okay, but it is understandable in some circumstances. Is there a difference? I think so, in that I can see why I or someone else would tell a “little white lie” in some situations, but that doesn’t make it right.

4. What’s the last thing you ‘chopped’? Cherry pie, chocolate covered cherries, a bowl of cherries, cherry vanilla ice cream, maraschino cherries, a cherry lifesaver…your favorite cherry flavored something?
I don’t think I chopped anything recently. Honestly, when I used to cut veggies when cooking myself, given the size I’d leave them, it wasn’t really considered chopping.

I don’t really care for cherry-flavored anything, so give me a bowl of the actual fruit instead.

5. Describe yourself with three words using your first, middle, and last initials.
Okay, this is hard, if for no other reason, then because I don’t have a middle name. My last name does have a prefix though so I’m going with that.
Authentic, Vivid imagination, Weird.

6. Insert your own random thought here.
I have this burning sensation somewhere along my spine that I’ve finally decided I’m going to ask the staff to call my GP about. So far, when I’ve asked the staff to take a look at where I think the sensation originates from, they don’t see anything but I do have a large mole on my back that I’ve been worrying about for months now. A picture of it did get looked at by my old GP back in Raalte and he said it wasn’t of any concern. Let’s hope he’s right and the burning sensation won’t be anything worrisome either.

#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.

Things That Made Me Smile (February 6, 2023) #WeeklySmile

Posted on by Astrid

Hi everyone. I had a rather difficult first half of my day. Slept rather poorly because of some worries about my care situation and, while trying to talk through my thoughts with a staff, got even more frustrated. The evening isn’t going great either: lots of random staff switches and a fellow client who spiraled into crisis when I was in the living room. What better time then the present to focus on the positives? As one of my teachers once said, you can only be happy once in your entire life and that’s right now. For this reason, I’m joining Trent’s #WeeklySmile. Here goes.

This afternoon, the new student staff took me on a walk. First, we went to the cafeteria in the main office building to get a hot cocoa for me and latte macchiato for her.

Then, we walked some more, while chatting about random things. At one point, we got to talking about positive thinking and she told me to throw all my negative thinking onto the nearby highway to be run over by trucks. I told her an elaborate story about how my husband, who is a truck driver, would run over all my negative ideas on his way to Hoorn, which is his default route, and catch unicorns for me while there to fly all positivity my way. After all, the symbol for the city of Hoorn is the unicorn.

Then we started singing children’s songs. I sang (well, in my out-of-key way) the English version of “The Wheels on the Bus” to her, while she taught me some modern Dutch children’s songs. We also remembered an older one that I happen to have sung at a Kindergarten contest.

The rest of the day was stressful once again, but I cherish this moment.

Chasing Perfection? #SoCS

Posted on by Astrid

Whenever I think of how bad I feel about my current care home situation, I am reminded of two seemingly contradictory statements from my staff. One is that I think every place is horrible anyway. The other is that I had “gold in my hands” at my old home. These seem contradictory, but really aren’t. They are two sides of the same coin: I am thought of as chasing perfection.

There may be some truth to this idea indeed, but that doesn’t negate the fact that one can learn and this place is definitely bad. It isn’t like I just need to accept what I have now just because I can’t have it all. Besides, if people – the powers-that-be, such as the behavior specialists – just had been honest with me about the fact that, indeed, to live with people of higher IQ would mean more expectations and less support, I’d have declined to move. That was, after all, the comment I put at the bottom of my “housing profile”.

And it isn’t like I chase perfection everywhere. Or honestly that I thought, at the end of the day, that this place would be perfect. Yes, when I read the home’s profile on the website, I thought it’d be, but that leaflet is either outdated or simply incorrect. But when the behavior specialist for my old home explained some things about the home, I did realize it wasn’t perfect. Same when I visited here twice. But then again, perfection doesn’t exist. And I was willing to make some sacrifices to live on institution grounds and have fellow residents I could chat with. But not everything I had: all the daily structure, all the useful day activities, all the proper help with ADLs and, interestingly, behavioral regulation too. Because, despite the fact that this home is an intensive support home, which means the residents have significant challenging behavior, whereas my old home was a care-based home, I see more people managing huge wildfires of escalating behavior without realizing the proverbial cigarettes they’ve thrown onto the ground themself.

This post was inspired by today’s prompt for Stream of Consciousness Saturday: “perfection”. I am sorry for being repetitive yet again. This whole care home situation is getting old, but I wish that meant I’d actually adjusted to it. I’m not sure I ever will.

#WeekendCoffeeShare (January 28, 2023)

Posted on by Astrid

Hi everyone on this last Saturday of January. I’m joining #WeekendCoffeeShare today. It’s 9PM here, so I already had my last cup of coffee for the day about two hours ago. I also tasted a new drink I think I like: vitamin water. I am not under the impression that there’s all that many vitamins in it, but who cares? Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking about your weather. Ours has been cold, with daytime temperatures barely above freezing point. It’s not been raining or snowing though and today in fact it was quite sunny.

If we were having coffee, I would ask how you all are doing. I’m still struggling in my care home. Last week (or the week before, I can’t remember), I hit another low point and my mother-in-law sent an E-mail to the behavior specialist telling her I basically don’t want to stay here. The behavior specialist was going to try to schedule a meeting between me, my mother-in-law, her, my assigned staff and the support coordinator, but I haven’t heard anything so far.

If we were having coffee, I would tell you that I’ve finally been working with polymer clay again. It’s been a while. On Wednesday, I created a bull’s eye cane. That was too frustrating for me and I nearly gave up on polymer clay altogether because of it. Thankfully, in the Dutch polymer clay group as well as an unrelated FB support group, people encouraged me to continue with what I can do well, which is sculpting. This helped me to get moving and create yet another unicorn. Oh well, it’s the same style as all my other unicorns, but I intend to decorate it with Hotfix rhinestones.

I originally intended to go to a store for Hotfix products near here with my mother-in-law on Tuesday. Then someone from the Dutch polymer clay Facebook group offered to send me some samples to try. That’s so kind of her!

If we were having coffee, lastly I’d share that I haven’t had a healthy dinner all week. The reason is the fact that the care home’s kitchen is being renovated and so we can’t use it at all. The only day I had the option of a healthy dinner was today, but I can’t stand soup and certainly not pea soup. For clarity’s sake, there is a kitchen the staff can use at the day center, but all week except today they for whatever reason chose easy-to-whip-up but unhealthy alternatives such as pizza delivery, microwave pancakes or bread with Russian salad.

How have you been?