#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.

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 18, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s 5:35PM as I start writing this post. I probably won’t finish it until past seven, when I’ll have my last cup of coffee for the day. Care to join me? We also have pure green tea (so the kind without flavoring). We also probably have lemon-flavored green tea, but I don’t care for that. I did discover a new kind of green tea, Indian chai green, which I do love. It is loose-leaf tea, which I rarely have, but I think this one is quite good. I can brew you a cup of this too. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d ask about your weather, as I usually do. Ours has been mixed. Early in the week, we got some sunshine, but later, it’s been rainy. The daytime temperature usually rose to about 12°C.

If we were having coffee, I’d tell you that my mother-in-law, my assigned staff and my support coordinator were supposed to have a talk on Tuesday. I wasn’t invited and the goal of the meeting remained unclear to my mother-in-law until the last moment. Then, it was canceled because my support coordinator was off sick. My mother-in-law took the opportunity to make it clear that, if it’s up to me and her, the possibility of me moving out of this care home should be a serious topic of discussion at a rescheduled meeting. She also pointed out that she’d like the behavior specialist present. This meeting, all going well, has now been set for March 2. I’m not sure whether I’ll be allowed to attend too. I think I should, honestly.

If we were having coffee, I’d share that, instead of coming to the meeting, my mother-in-law paid me an extended visit. We drove to Apeldoorn, like we seem to do regularly, and had lunch. Then we went into several shops to buy some little presents for one of my mother-in-law’s coworkers at her volunteer job, who will be going into hospital soon. It was there that I discovered the Indian chai green tea. We also went into a supermarket so that I could buy rolled oats, raw nuts and some other things. I fully intended to make overnight oats with those rolled oats. I did try, but either used too much milk or did something else wrong, because there was a lot of milk that hadn’t been absorbed by the rolled oats.

If we were having coffee, I would share that I did end up crafting a Valentine’s Day present for my husband after all. It’s a polymer clay heart with an arrow in Premo cadmium red with a Fimo Effect metallic gold edge and the arrow is done in Premo white. I textured the back using a ball of tinfoil, which turned out rather ugly – uglier than it would’ve been with visible air bubbles, which texturing aims to prevent. Oh well, that means I learned something.

If we were having coffee, I’d tell you that I weighed myself on Thursday, as I do each week, and I lost another 0.6kg. I have only 2kg to lose to be at a healthy BMI. I am still slightly worried that some physical health condition is causing me to lose weight, because to be honest I’m not minding my diet much at all and I’m not exercising excessively either. However, I did notice that my Apple Watch estimates my cardio fitness level has increased. It’s still “low”, as it’s always been, but is slowly creeping towards “below-average”.

If we were having coffee, lastly I’d share that I didn’t walk as much as I’d have liked over the past week. I signed up for a challenge with other Apple Watch users in an app called Challenges. The challenge ran from Monday through Friday. I started out doing quite well on Monday, starting with a walk to visit the institution’s petting zoo, which is about a 45-minute walk total. My feet hurt terribly after it. During the rest of the week, I didn’t do so well. I ended up 48th out of 88, which I’m okay with all things considered. I’d have liked to be in the top half.

By the way, while at the petting zoo, I took a picture of the goats. I didn’t get to actually pet them.

How have you been?

#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.

Some Glimmers of Hope

Posted on by Astrid

Hi everyone. It’s once again been a week and a half since I last posted. This week and a half hasn’t been boring at all. In fact, it’s been filled with events that triggered all kinds of emotions in me.

Last week Saturday and again on Monday, I had some very difficult conversations with my assigned staff. She turned out not to mean things too badly, but just got very frustrated with my trouble understanding non-literal speech. We also once again ran in circles about this home being very different from the home I come from and my being used to the old home and never getting it like that here. I know, I don’t expect things to go precisely the same as they went there, but there’s something between the way I was treated at my old home and the very harsh way I’m treated here.

These conversations got me so frustrated that I started thinking I may need to get an independent client supporter to help me find another home. After all, moving to another home within my current care agency, isn’t an option.

Then on Wednesday, a staff told me about her plans for getting day activities rolled out at this home. I’m not sure I can participate in all of them, but some I can take part in. This staff also assured me that my assigned staff is completely on my side.

This also became clear when I had the meeting with the mediator, my assigned staff, the behavior specialist and my mother-in-law yesterday. My assigned staff admitted that some (most, in my experience) of her coworkers treat me just like they treat everyone else at this home. Apparently the harsh approach is what the others need, but I don’t (unless I for instance insult a staff member, which only happens during a severe meltdown, 99% of which can be prevented with the right support). We agreed that my signaling plan (for preventing and averting crises) will be revised, but the behavior specialist assured me that for the most part it can stay the same. After all, she said I haven’t become a different person since moving here. That felt validating.

I positively told the people attending that, since implementing my new day schedule, things have significantly improved. I also told them I realized this may be all I can expect of the staff, so I am (trying to be) all happy when it goes smoothly. However, when it doesn’t go smoothly – for example, when the staff are frequently late for my assigned support times or leave me alone beyond my assigned alone times more than occasionally -, I’m not happy. It gets worse when the staff justify their tardiness or leaving me alone beyond my assigned alone times with some comment about my not having (full-time) one-on-one. Their reasoning is that, since my one-on-one isn’t full-time, I essentially don’t have one-on-one at all and can just expect staff to pop in whenever they please. Their terminology is a bit screwed (I think I explained it in a previous post) and it irks me beyond belief. I know I don’t have full-time one-on-one and I don’t expect it, but I do have the day schedule for a reason.

Both the behavior specialist and my assigned staff validated my need for the day schedule and for staff to stick to it. I said I understand that a severely challenging situation among my fellow clients could be a factor preventing this, but the behavior specialist said this shouldn’t happen more than a few times a week. Currently, it’s usually at least once a day (and I obviously don’t mean the times my staff is running like five to ten minutes late for my support). My assigned staff actually went so far as to say the extra staff is there primarily for me. She is going to clarify this and some other things in a basic info sheet on me that all staff can read when starting their shift with me.

Altogether, the meeting gave me some glimmers of hope. It remains to be seen whether the staff actually do something with what came out of it. I do still have my worries about my support coordinator overriding all this once she returns from her time off. Then again, I am pretty sure that, if the behavior specialist actually means what she said, my support coordinator can’t really do that.