#WeekendCoffeeShare (September 21, 2024)

Posted on by Astrid

Hi all on this beautiful Saturday in September. I’m joining #WeekendCoffeeShare today. It’s 7:30PM, so I just had my last cup of coffee for the day. I also had a delicious smoothie I made. I must admit, I normally don’t make the best smoothies, or at least I don’t really like them myself. This one though was absolutely great! I used banana, pineapple, coconut water and a bit of cinnamon. The cinnamon was old, so even though I’m pretty sure I put quite a bit into my smoothie, I only got a slight taste of it. I shared what I had left with my fellow residents, but since this is a virtual get-together, you are invited to grab a virtual cup.

If we were having coffee, first I’d share about the weather. It’s been absolutely gorgeous with daytime temperatures of about 23°C most of the week. It’s also been quite sunny. Mornings are chilly, but then again it’s September, so that makes perfect sense. Tomorrow is supposed to be the last warm day and then next week daytime temps are supposed to drop to as low as 13°C.

If we were having coffee, I’d probably be stating the obvious if I said I’ve been walking a lot. I sometimes feel guilty when this is pretty much all I do during my allocated activity time. Then again, I tell myself the weather isn’t going to be as beautiful as it is now forever.

I also have been taking photos on my walks. That is, I usually hand my phone to my staff, who then will be snapping the pictures. I enjoy it nonetheless. Yesterday, we were able to capture a bunny.

I have also been loving using Be My Eyes and other image description apps. Be My Eyes was even able to correct me and my staff on what type of bird was swimming in the institution pond.

If we were having coffee, I’d talk a little about the new iOS and WatchOS versions that came out on Monday. They’re quite stable and there aren’t many bugs affecting VoiceOver or Braille use. That’s a rarity with the first release of a major software update. I didn’t initially think I’d care for iOS 18, but WatchOS 11 does have some nice features and I’d need iOS 18 for that. I am looking forward to seeing my Vitals trend in a few weeks.

If we were having coffee, I’d tell you that I’ve been struggling a little with flashbacks and nightmares. I am, thankfully, for the most part still able to cope.

If we were having coffee, I’d share that on Wednesday, I celebrated one year in my current care home. I treated the entire home to burgers again, like on my birthday, but this time the salad I made as a side dish was the highlight for me.

If we were having coffee, lastly I’d tell you that on Thursday, it was my and my spouse’s thirteenth wedding anniversary. We drove to Nijmegen to have lunch at what I consider to be my favorite restaurant, Dromaai. Not that the food is exceptionally good, but I have fond memories of eating out here with my partner when I still lived in Nijmegen.

Exploring “Safe Ground” in a Less Than Optimal Care System

Posted on by Astrid

I’ve been exploring the concept of “safe ground”. This is a buzzword in the long-term care sector, particularly in the care of people with severe challenging behavior. It is used to describe the idea that people are unconditionally accepted in their care homes and will not be kicked out for their behavior.

I’ve been feeling drawn to this idea, because I’ve been kicked out of services, or out of the particular service I used, for my behavior several times.

One video I watched on the topic of “safe ground” explored a care home for the most severely challenging individuals. As in, there are only 24 places in the entire country. I don’t know why I was drawn to this video, because I’m not nearly the most challenging resident on grounds here, let alone among the top 24 of the country. In fact, I would say that at least one of my fellow residents here at my home is more challenging than me.

There are two concepts to unpack here, which may or may not be related. The first is, why do I identify so strongly with the most difficult of clients in the care system when I’m probably somewhere in the middle? The second is, is “safe ground” only the idea that people won’t be kicked out for their behavior, or is it more generally speaking unconditional acceptance of clients with their unique needs?

I’ll explore the second concept now. I think “safe ground” means more than just not kicking out clients, and in this respect, it’s relevant to me. I think it means (or should mean) seeing the unmet needs behind challenging behavior. Seeing the person rather than the client. I still think that, even if I don’t end up being kicked out of here for my behavior, there’s still a world to win here. I am hopeful that, when the things we discussed a few weeks ago at the meeting between my support coordinator, behavior specialist and me, will be implemented, we’ll get close.

That being said, it’s still 2024 and this means no optimal care for anyone. I think one of the things I wish people would admit is that they’re having to deal with a strained system rather than blaming the client for their challenging behavior.

I ran into this yesterday, because there’s yet another change in staff hours, and yet the other support coordinator claimed everyone gets the attention they need. No, that’s not true, or it depends on how you define “need”. After all, most of us do mostly get our needs for physical care met, by which I mean we get dressed, showered and have something to eat. Most of us however are still routinely left to fend for ourselves when we’re struggling emotionally. I and the more challenging fellow client are the lucky exceptions to this rule. Even so, I would not call my care optimal. That isn’t going to happen and that’s sort of okay, but it makes a massive difference whether staff blame me or they blame the system. In other words, are we talking about things we as clients shouldn’t expect or things they cannot offer? The end result is the same, in that we have unmet care needs, but the latter is a lot more empathetic towards us.

Friday Feels (September 13, 2024)

Posted on by Astrid

Hi everyone. Today I’m participating in Friday Feels. The idea is to answer three questions about the past week and share an F word related to it. The questions are:


  1. What made me happy?

  2. What made me sad?

  3. What made a difference?

F word

My F word for this week is “fall”. Last Saturday, it looked like summer wasn’t going to end anytime soon, since the daytime temperature reached 27°C. From this past Monday on though, the weather’s been considerably chillier and rainier. On Wednesday, the temperature didn’t even get above 14°C. Today is slightly less chilly, but the nights are truly getting colder.

What made me happy?

First, Chinese takeout for dinner on Monday to celebrate a fellow client’s birthday.

Second, a treat of one of my favorite biscuits with my afternoon coffee today.

Third, the fact that I was able to get the WiFi on my iPhone to work properly again here. It turned out that turning off a privacy setting on my phone for this particular network, solved the issue.

Last but certainly not least, swimming! On Wednesday, I heard that two of my fellow residents were going swimming at the institution pool that evening. Usually, about seven or eight residents go and it’s too overwhelming for me, but since there was another activity too, just these two guys were going. I took up the courage to ask my staff whether I could go too. It was amazing!

What made me sad?

I experienced a slight increase in bad memories over the past week. Mostly, they were manageable, which is why I’m not using the word “flashback” to describe them.

What made a difference?

There are several things that made a difference this week. First, the fact that one of my trusted staff returned from vacation this week. Most are still on holiday, so the next few weeks will be somewhat difficult still, but I managed this week.

Second, the weather, like I said, is very different and it made a difference, in that I could sleep under my weighted blanket without sweating excessively. This is important, because until now I thought something might be wrong with me. I guess not.

Third, the new agreement that staff will no longer unlock the door for me when I want to elope and will physically restrain me if necessary to keep me from for instance climbing over the fence. I saw the agreement on Tuesday and, though I still have some questions about it, I am for the most part relieved about it.

Attention Is a Valid Human Need

Posted on by Astrid

Hi everyone. One of the prompts for this week’s Writer’s Workshop is to write a post based on the word “attention”.

This immediately brings back a flood of memories of my time at the intensive support home. On one particular occasion – but I’m pretty sure there were many more -, a staff said to her coworker about a client in crisis: “It’s all attention.” She said “attention” in English, not Dutch, apparently hoping the client in crisis or his fellow clients (including me) wouldn’t understand. One of my fellow clients immediately chimed in by translating her comment into Dutch.

The idea that challenging behavior is “for attention” is often not entirely based in truth. However, even if it is, attention is a valid human need. And especially at the intensive support home, clients routinely didn’t get it.

You might think we did get more than enough attention, since the staff/client ratio is 1:2 to 1:3 at this home. But more often than not, staff were doing stuff on their phones, chatting to each other and on at least one occasion, I caught two staff playing a board game together and the third cheering for them. That third person was my one-on-one for the moment, but, because I was also playing a game with a fellow client, the staff thought it not necessary to pay attention to me. Then when I started showing signs of distress, he missed them until I ended up in a meltdown, then told me I could’ve said in a calm voice that I wanted to go to my room. Well, guess what? One of my first signs of distress is an inability to communicate effectively.

On another occasion, the fellow client about whom the staff felt the need to communicate his “attention-seeking” in English, was having an outburst again. I told my one-on-one for the moment that I could see why, because he’d been left to his own resources, often locked in his room, for most of the day. My one-on-one told me he’d had more than enough attention, since he had been having a cup of coffee with the client and had created his day schedule. As if a fifteen-minute coffee chat means you can be left alone for the rest of the day.

Remember, I and my fellow clients have a developmental disability. Most of us cannot participate in everyday conversations among non-disabled people, so when the staff are chatting to each other, most of us will feel left out of the loop. And just because staff are in the same room with us, doesn’t mean they’re attending to our needs, as my example of the board game illustrates. At that point, I needed someone to pay attention to the subtle signs that I was going to land in a meltdown.

And like I said, attention is a normal human need. Staff aren’t telling each other that they’ve had more than enough attention because they’ve had a break (that usually lasts for 45 minutes, four times a day) together. In my opinion, honestly, they should.

A Good Meeting With My Support Coordinator and Behavior Specialist

Posted on by Astrid

Hi everyone. I really want to write more about what’s on my mind and, after a few months of struggling, I finally have some good news. I just saw in my private journal in the Day One app that it was a year ago when I heard my moving date to this home. I moved two weeks later. How time flies! After a meeting with the behavior specialist and my support coordinator on Monday, I can safely say that, if the things we agreed on will actually happen, I’m going to have a pretty good life here.

I had requested this meeting a few weeks ago and it was originally scheduled for the 17th of September, but thankfully there was time to do it on Monday. We mostly discussed a document I’d written sometime in early August detailing my care needs (as I see them). Thankfully, most were things the behavior specialist and support coordinator could agree with me on. Here are the things we’ve decided.

1. Less staff switches and more clarity about who will be supporting me during the day. Currently, it’s only clear who will do my two-hour-long activity in the afternoon and the rest is guesswork. I wrote that I can’t help trying to figure out in my head who will be supporting me for which of my eight or so support moments during the day. The support coordinator and behavior specialist came up with a schedule for who will support me when based on what times each staff comes on. This, and all other agreements, won’t take effect until sometime in late October.

Staff will also get designated time to write up their daily notes about me. I also requested staff do a short handover (like, two minutes on how I’m generally doing) when they switch. I can’t remember what was agreed upon about this, but it should be relatively easy with the fact that I’ll have mostly no more than four staff supporting me over the course of the day.

2. My day schedule for weekends will be changed to be the same as my weekday schedule. Currently, there’s a fifteen to thirty-minute time difference, which is confusing. I originally proposed to remove an activity time slot from my one-on-one on weekends, so to make it very different, but that didn’t seem to be a good idea. I honestly mostly said this to stick to my allocated one-on-one hours. After all, the other support coordinator used to be really strict on these.

They’re going to try to get me slightly longer staff support in the evenings. Currently after 7:15PM, I’m supposed to be by myself except for a few two-minute check-ins.

They were also very clear that appointments with the physical therapist, play therapy etc. are not dependent on my day schedule. What I mean is, if they happen to be during a support moment, fine, but if the therapist’s most suitable moment is outside of my one-on-one, that doesn’t mean I’ll need to compensate or go to therapy without staff support. The other support coordinator had been shoving my day schedule into the physical therapist’s face before she could even pull out her calendar, which led me to say that PT isn’t day activities so shouldn’t be during my activity time slot and I’ll go alone if this means no support.

Finally, it was agreed upon that, if I come out of my unsupported time in distress, staff will help me and this does not need to be compensated for (unless it takes so long that staff’s other tasks will suffer).

3. The support coordinator will be advocating for there to be a trusted staff for me at least part of the day most days. The other support coordinator is the home’s planner and he’s been really tough to get along with, so we’ll see where this goes.

The support coordinator did say that she and my assigned staff will try to see me regularly too. I can also ask one of my trusted staff whether I can talk with them (support coordinator or assigned staff) about something.

4. I asked for recognition of how far I’ve come over the years with respect to for instance accepting temp workers, accepting unexpected staff changes, etc. This was quite a hard one to explain, but it eventually made sense.

5. I asked to no longer be let out the door when in distress. I agreed to be physically restrained and led to my room if necessary too. This is going to take effect sometime next week, since I felt really let down when the staff opened the door for me.

I later realized that this is really already in my crisis plan, but it contradicts the support agreement that I’m free to leave the home as I please and as such staff unlock the door when I want to leave. How this will all be put down on paper, is not fully clear with me, but I’m confident it will work out.

Overall, I’m really pleased with the outcome of this meeting. The only problem I can foresee is the other support coordinator, who is really coordinator for my side of the home, discarding everything as unworkable.

#WeekendCoffeeShare (August 10, 2024)

Posted on by Astrid

Hi everyone on this beautiful Saturday in August. I’m joining #WeekendCoffeeShare today. It’s nearly 10PM, so I’ve long had my last cup of coffee and my soft drink for the day. I, however, do have Kinder Country candy bars in my cupboard, as well as lots of other candy. I bet I could persuade the staff to open the cupboard for you, but I can’t persuade them to brew you a coffee. Water will have to do. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing about the weather. It’s mostly been quite warm with daytime temps in the mid to high 20s Celsius. We did get rain yesterday, but thankfully no thunderstorms. On Monday, the daytime high is supposed to be 32°C. I’m a warm weather person, but that’s too hot even for my liking.

If we were having coffee, I’d tell you I did a lot of walking over the past week. On four days out of the past seven, I got in over 100 exercise minutes according to my Apple Watch and I didn’t even go swimming this week, as the institution pool is closed now.

If we were having coffee, I would tell you that I’ve been struggling a lot lately. Part of the reason I’m showing it more might be the fact that I discontinued my morning dose of topiramate a little over a month ago, but it’s not (just) that which explains why I’m feeling like crap. After all, I’ve been feeling like crap for months. Make that years, honestly. I am realizing I never recovered from the blow to my self-esteem that was being more or less kicked out of the care home in Raalte. No, don’t interrupt that I wasn’t kicked out, since I know I literally wasn’t. However, when I realized the intensive support home was the nightmare it was and asked to be put on the waiting list to return (or actually return, since I asked before my room was filled up), I was told that some people had actually been glad that I’d left.

Why is this relevant now? Because, even though my current home is better than the intensive support home, I’m still feeling like I’m massively overloaded and my capabilities are massively overestimated when I’m struggling. This leads to staff not following my current support agreements, which even when followed to a T create just about barely manageable a care situation if even that when I’m feeling low (they’re okay when I’m feeling good). I know I said the same of my day schedule back at the intensive support home, but I only said so because my staff there had already decided I was a spoiled brat and wouldn’t stop complaining until I had full-time one-to-one. Which was almost correct before topiramate, but it wasn’t when I was on this medication. And it isn’t now either. After all, when I wished for near full-time one-on-one back in 2021, I didn’t realize its implications in care. I do now.

I realize I might need to go back on my full dose of topiramate (even though the evening dose is going to be discontinued next week too), but I don’t think it’s an excuse to keep everything else the exact same, since my needs weren’t being met before I discontinued this medication. In short, yes, the med might get me to shut up, or it might not, but either way something else needs to change too.

After many meltdowns, I finally wrote down my care needs in a document and E-mailed this to my assigned staff. I did water them down a little to make them manageable within the way my home operates, but not so much that I’d have every reason to still complain if the team decide to implement this. At the end of the document, I put in a brief summary of my care in Raalte (in early 2022, so when the team had already fallen apart) and asked for recognition of the improvements I’ve made since. I mean, I don’t seriously request to be moved now (I do blurt it out during meltdowns) and I wish I got half as suitable care as I got back then.

The support coordinator mostly making decisions about me, is on vacation now, but she’ll return on Tuesday. I hope I’ll have a meeting with her and the behavior specialist soon to discuss my needs.

If we were having coffee, lastly I’d share some positives of the day today. I realize this post was mostly negative, after all, but today was a pretty good day. Here are some reasons why:

  • My assigned staff was here this morning.

  • She brought me a cup of coffee right when waking me up.

  • Even though we were late finishing my morning routine, the staff coming for my morning activity came right on time.

  • I went for three walks today.

  • I had a waffle with forest fruit jelly, powdered sugar and whipped cream on it with my afternoon coffee. And a macaron in the morning. Sorry not sorry, dietitian.

  • I was able to ask the staff who did my afternoon activity with me, whether she’s leaving (which I thought because I’d seen her with a client from another home) and thankfully she said no. I am proud of myself for up front asking her rather than getting distressed.

Gratitude List (June 30, 2024) #TToT

Posted on by Astrid

Hi everyone. Today, I’m doing a gratitude post. As usual, I’m linking it up with Ten Things of Thankful. I’m not in a good mood, but, as I usually say, that’s the best time to do gratitude posts, as it usually surprises me with how many things I can come up. Let’s go!

1. I am grateful for the weather. On Tuesday, Wednesday and Thursday, it was a little hot for my liking, but the temperatures setteld down eventually and today the daytime high was 23°C.

2. I am grateful I tolerate the heat pretty well. On those hotter days, when the daytime high was 30°C, everyone was complaining about being hot, but I handled it okay.

3. I am grateful the institution “townhouse” was finally opened last Tuesday. If I’m correct, construction finished over a year ago and I was half-joking that they’d built the thing without realizing budget cuts would mean there was no use for it. It will be used for leisure activities. I do wonder what will happen to the building these activities used to take place in, since that building too had extensive roof work done recently so I’m hoping they won’t just let that building rot.

4. I am grateful for cheesecake. I made it as a birthday treat for the entire home (both sides, so 20 clients plus staff) on Thursday. The staff I made it with, had never made a cake or pie before, but it was a definite success.

5. I am also grateful my order for buns at the local bakery went well. I was going to treat the entire home to hamburgers, but when I tried to order the buns online to be collected on Thursday, something on the payment website caused me to go paranoid and I canceled. My spouse calmed me down and I retried and was successful this time.

6. I am grateful the hamburgers were delicious! I had two of them.

7. Speaking of my birthday, I am grateful many of my fellow clients came by my room in the morning to wish me a happy birthday and to sing for me.

8. I am grateful for two cards from a former fellow client from the intensive support home. I by chance walked by there today and she called out to me and went inside to fetch the cards.

9. I am grateful for the gift voucher for one of my favorite clay stores I got from my sister. I am full of ideas of what to buy with it.

10. I am grateful for the music pillow I got from my spouse as a birthday present yesterday. It is connected to my iPhone via Bluetooth. After a bit of trial and error figuring out how it works, I slept like a log last night listening to one of my favorite calming music albums on Spotify.

What are you grateful for?

A Birthday Visit From My Sister and Her Family

Posted on by Astrid

Hi everyone. It’s really been forever since I last touched the blog. I won’t even promise I’ll try to make a habit out of posting more regularly, as I just don’t know when the motivation and inspiration strike again.

I originally wanted to link this post up to Leigha’s Sunny Sunday, then realized my post, though not overtly negative, wasn’t specifically positive either. I could say that yesterday was a literal sunny Sunday though, with lots of sunshine and daytime temps of 25°C. We’re supposed to get sunny weather at least up till this Thursday. I actually like it, but some people are already complaining that it’s too hot. Then last week they were complaining that we didn’t get a proper summer, as it was raining and the temperature usually didn’t get above 18°C.

Yesterday, my sister and her family (my brother-in-law and two nieces) came by for an early visit for my birthday. They arrived here shortly after 9AM, because they had wanted to visit the petting farm here on institution grounds and, according to the website, its opening hours were 9AM-10AM. When we arrived, we saw that it wouldn’t close till 11AM. Its size was a little disappointing to my sister and my nieces (particularly the older one) were tired so it was hard to keep their attention.

We also took a walk on grounds, during which my older niece went on the swings. I tried to push her, but just as my sister was about to take a picture, she jumped off. Both of my nieces also had a turn playing the outdoors xylophone. At one point, my youngest niece, who is two, played “Jingle Bells”. Couldn’t have been farther away from Christmas, but who cares?

The family gave me two unicorn-themed presents: a unicorn bag filled with shower products and a My Little Pony Unicorn which supposedly has candy-scented hair. I probably looked a bit disappointed when I opened the gifts and to be honest I was, but when I talked to my spouse later on I realized from my nieces’ perspectives these are really well thought out gifts. My sister also promised me a gift card for one of my favorite claying supplies stores, which will be really very much appreciated.

We had lunch in my room and backyard. I had ordered poppy seed and sesame seed buns, as well as muesli rolls, from the local bakery. These were delicious!

The family left at around 1PM. It was a good visit overall, although looking back I’m glad I didn’t have my spouse over as well, as that would’ve been too tiring.

Stabilize With Medicine

Posted on by Astrid

I talked to the support coordinator, the one who’s officially the other part of the home’s support coordinator but attends my meetings with the behavior specialist because I don’t get along with my support coordinator (my former male assigned staff). She had talked to the intellectual disability physician and I won’t have a meeting with her on tapering my medication until late September. The reason is the fact that there’s lots of temp workers at the care home during the summer months and they want me stable for now. Well guess what? If you want to wait for there to be few temp workers, you’d better wait for 2034, as I usually say. For those not aware, 2034 is my code word for never. It’s inspired by the book called 2034, which is about World War III.

I’m pretty angry about this whole thing, because well I already have mildly decreased kidney function as is. That is, I had mildly decreased kidney function a year ago at my last bloodwork, so who knows if it’s gotten worse now? And, as you might know, kidney disease doesn’t usually cause symptoms until it’s pretty advanced.

I don’t even mind waiting till September, except that this means seven months on my current med combo rather than the originally planned six weeks. And except that who knows what will get in the way in September? For all I know, the support coordinator might’ve gotten pregnant or sick or have left like the last one.

I honestly feel like they want to stabilize me with medicine rather than with the right support. And, for what it’s worth, I’m not very stable as is. Never was. Not with five different medications, many of which on high doses.

This post was written for John Holton’s Writer’s Workshop, for which one of the prompts is to pick a line from a song you like and use it as the title of your post. I picked the line “Stabilize with medicine”, which I’m not sure is a full line, from the song Serotonin by Girl in red. This song is rather explicit, so I hope John doesn’t mind me sharing it in his challenge.

Experiencing Envy As an Enneagram Type Four

Posted on by Astrid

Hi everyone. Lately, I’ve had some real struggles that got me thinking hard about myself. I often want to love myself and that, interestingly, seems to include denying my less than stellar qualities. Then again, if I really want to love myself as I am, that includes accepting my shadow side too.

Today, I am focusing on one of these aspects of myself I’m not so proud of: envy. I’m exploring this from an Enneagram point of view.

As those who’ve read my other Enneagram-based posts know, I’m a type Four. Fours’ core vice is envy. More specifically though, I’m a sexual/one-to-one (SX) type where it comes to instinctual variants. These are not just focused on envy, but on competition.

I don’t necessarily consider myself very competitive in sports or games or whatever. In fact, I’m quite the opposite. However, I realized I’m an SX type when reading the first chapter of The Complete Enneagram by Beatrice Chestnut and watching some YouTube videos too. I realized I do compete with my fellow clients for care.

Like, I can’t stop claiming that one particular fellow client doesn’t need to deal with temp workers. Whether that’s true, doesn’t even matter to me, as I honestly couldn’t care less about his care. In that sense, I’m not competitive. Oh wait, that’s a lie. I didn’t start competing for care until I met the full-time one-on-one client at the intensive support home, so in this sense, it does matter what others have.

I do also believe envy is part of what got me to decide to enter a forum my spouse is active on recently (I left when my spouse called me out). My intention wasn’t to spy on my spouse, but rather I was envious of the connections my spouse had made through that forum. Never mind that I am on a ton of forums myself and could have developed genuine connections if I just cared to put in the effort. I probably have myself and my being a Four to blame for the fact that I never feel like I belong anywhere. Which makes me think, maybe I really am not an SX type, but a social (SO) type. I do need to look into instinctual variants more.