#WeekendCoffeeShare (July 4, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s nearly 10PM as I start typing this post and I’ll soon need to brush my teeth, but I’ll finish this post before going off to bed. I just had my cup of green tea. If you’d like something to drink either hot or cold, feel free to and let’s chat.

If we were having coffee, first I’d talk about the weather. The heatwave has thankfully ended and we now usually have daytime highs of about 24°C, sometimes even cooler. It’s been quite windy and occasionally rainy too, so I’ve actually even been wearing my jeans again.

If we were having coffee, then I’d tell you that, obviously, I didn’t meet my June monthly challenge goal on my Apple Watch and I didn’t get the perfect month award. So far in July, I’m still meeting my movement goal each day, but I’m not expecting to make it to a perfect month this time either.

I did ride the side-by-side bike to the next town’s market again yesterday. It had been months since I visited the market, but the guy behind the olive stall did recognize me.

If we were having coffee, then I’d tell you all that I celebrated my birthday at the care home on Wednesday. It was a bit difficult. I’d had big plans for baking two cheesecakes and making a pasta bake for the entire home (20 residents). The cheesecakes were a success, but during the pasta bake preparation process, there were some bumps in the road. However, in the end both were delicious! Yes, even the fellow resident who always complains about food being too spicy, loved my pasta arrabbiata bake. I’d made it once before but had then deseeded the peppers. Not this time.

Caramel cheesecake
Pasta bake

If we were having coffee, I’d tell you that I’ve also been quite crafty recently, particularly early in the week. I crafted two small butterflies out of polymer clay (using a mold), to be turned into earrings later. When my one-on-one for the moment saw my other molds, she wanted to use a bigger butterfly mold that I hadn’t used in years. She proposed to use multiple colors in a marbling technique and chose eight all very different colors, including both yellow and purple. I know a little about color theory and said yellow mixed with purple becomes a horrible brownish color. My staff said that, if the butterfly turned brownish, she’d take it home and display it on her fridge. I ended up giving it to her regardless, but it didn’t turn ugly! I do take the credit for being careful not to overmix the colors, though in hindsight I might’ve undermixed them for the effect she wanted.

Polymer clay butterfly

If we were having coffee, I’d share that this crafty endeavor made me decide to order several other small earring molds. My sister had gifted me a voucher for one of my favorite clay supplies shops and I spent it on molds, cutters and also two new colors of acrylic paint. One of the paints was named sorbet and I had absolutely no idea what color that’s supposed to be. I now realize I could’ve had AI describe the image on the website, but I ordered the color and only discovered that it’s a kind of pink once it arrived.

If we were having coffee, I’d finally share that specialized client support contacted the behavior specialist and they’re now going to get back to me. When I found out they wanted to talk to the behavior specialist, I feared my care agency was going to hijack the entire process. I’m still not convinced that they aren’t, particularly since finding out yesterday that the team leader had informed the staff that I’m leaving before I’d even gotten a clear idea of the consequences of the meeting with the substitute behavior specialist in which she’d posed the question whether I’m in the right place here. It doesn’t help that staff are making all kinds of assumptions about what kind of place would be better suited to me and what I find most important. The truth is, my main requirement is that a future placement’s team, including higher-ups, truly wants to understand and accommodate my needs. I don’t want to have to move again in two or three years.

April 2026 In Review

Posted on by Astrid

Hi everyone. I’m once again joining Natalie’s monthly recap. April was a month of high hopes. I started my new day schedule, which I figured out pretty quickly wasn’t working, in part because my assigned staff had randomly added several unrelated activities to each time slot. What I had hoped for, was a schedule organized around activities that logically follow one another, rather than it being about rigid time slots. I’m still trying to persuade my assigned staff (who is unfortunately still on part-time sick leave), my support coordinator (who will be off for a long while starting next week) and the behavior specialist (who I have only spoken to once) to change this. However, even though I explained why I believe it’d work in several E-mails, I doubt it’ll be implemented, simply because it requires my staff to be more flexible with my one-on-one.

I’ve realized more and more over the past month that no-one really knows my needs. And that includes me. Some people say I’m autistic and need lots of structure and “clarity” (which they confuse with bluntness). Others believe I have attachment issues and need to build trust in my staff, only to be told that I do chatter to some random temp workers so it’s just me being unwilling. Some say that my emotional development is comparable to that of a toddler while others counter that I’m verbally more capable than some of them. Some say I need to process my trauma, but all the while they add extra layers onto it. And that’s not even speaking about my brain injury, my blindness or the fact that I’m “getting older”, which my physician blames for everything.

This month included a few cooking and baking activities, but not as many as my day schedule allows for. I only did crafty activities twice even though it’s now in my day schedule twice a week. Staff often blame me for not “wanting” even though the few times staff actually asked me, I did get something done. Thankfully, I still do enjoy each time I get to do a cooking or baking activity, work with polymer clay or ride the side-by-side bike.

I’m trying to consume fewer animal products. I was inspired both by my wife, who is a vegan, as well as by the new Dutch food pyramid. I cooked a vegan curry for this side of the home at the end of March. In early April, I cooked a chicken pasta for myself, but the other two meals I cooked this past month have been vegan. One was another curry. The image description app I used correctly identified one of the ingredients as sweet potato, which I think is rather cool.

The other was baked potatoes, onion, bell peppers and a veggie schnitzel (which the EU has decided soon can’t be called schnitzel anymore due to it not containing animal, despite no-one knowing where a cow’s schnitzel is located on its body).

Last month, I said the month was hard only to conclude at the end of writing my post that it was better than I had initially thought. I unfortunately can’t say so of April. The last few days have been slightly less horrible than the weeks prior, but I’m not getting my hopes up about this continuing in the right direction. I feel a little guilty about this, because I did do more cooking activities than I used to do. I’m wondering whether I might be depressed or something. Since I’m also experiencing significantly more sensory overload than I used to, something neurological might also be going on. I’m getting bloodwork soon to rule out a vitamin deficiency (possibly B12), because I’ve been on pantoprazole in a high dose for years and have a history of several deficiencies. I’m not sure what I hope the test will show.

Breaking Point #WotW

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again, as well as participating in the Word of the Week linky. I’ve been struggling intensely over the past few weeks and am wondering how much longer it’ll take before I reach breaking point. Or whether there is such a thing as a single breaking point, honestly. I mean, I’ve been comparing the build-up to my being quite likely burned out to the horrific experiment (I tell the animal-loving part of myself it’s just a thought experiment, but I doubt it is) of the lobster in hot water. You know, the idea that if you throw a lobster into boiling water, it’ll jump right out, but if you gradually boil it, it won’t notice until it’s too late and then it’ll die. Realizing this actually happens makes my inner vegan sick! But I digress…

First, I’d like to talk about the weather. It’s been mild with daytime temps between 14°C and 18°C, but the nights have been a lot colder. We had a little rain early in the week, but none over the past few days and there’s none in the forecast for the upcoming week either.

Then, let me share how things have been going. I’m increasingly overloaded and have had quite a few incidents of crying uncontrolably over the past week. I’ve also been engaging in some compulsive self-imjurious behaviors, particularly at night. I’ve almost literally needed the night shift each night over the past few weeks. Each evening, I’m telling myself I won’t need them tonight and feeling guilty when I do. Most night staff are still understanding and kind, but it’s only a matter of time before they, like the regular staff, will grow weary.

Unfortunately, my support coordinator and assigned staff aren’t on the same page. The rest of the team are all over the place. Most are struggling intensely with feelings of powerlessness. Some admit that they wish they knew how to help me, while others act out their feelings by screaming in my face that if I go on like this, no-one will be there for me anymore. The first group, I feel some level of compassion for even if I don’t know how to show it. The second, I only feel scared of. I’m currently actually terrified for the times the staff who screams about there being nobody for me anymore the loudest will be supporting me. This is the same staff who shoved the “one chance” rule down my throat a few months back, but she’s also the same staff with whom I used to do quite many fun activities. She’s not a bad person or a lazy staffer, but she’s most definitely overworked.

I see it’s a vicious cycle: I’m distressed, exhibit more challenging behavior, which frustrates the staff, who then act out in more repressive ways, causing me even more distress… and unfortunately it’s the staff who show the least harmful repression to me who see the most of my obvious distress. I’m extremely scared of where this will end. My worst fear is the harsh staff being seen as more effective and their actions therefore being reinforced. I’ve heard of more than one current client at this institution being “bullied” (staff’s words) into compliance and I know even the Center for Consultation and Expertise is all for ABA (applied behavior analysis), including in many cases aversives.

I do try to see some glimmers each day. I however sometimes feel guilty when I can’t appreciate them or end up spiraling over some apparently tiny detail when I did enjoy some meaningful activities that day. I constantly hear the staff’s (same staff who screams that soon there’ll be nobody) words that I have nothing to complain about because I get familiar staff and enough one-on-one ringing in my ears. I try to remember my support is better already than it was at the intensive support home, but that only contributes to more guilt over my inability to be upbeat.

Recently, after a few incidents in which I’ve become physically aggressive, I’ve been thinking I should be forcibly medicated or even euthanized. My inner animal lover sometimes contributes to this. If aggressive dogs are put down, shouldn’t I? My wife, who is a vegan, countered that just because aggressive dogs are currently put down, doesn’t mean that’s the way it should be.

March 2026 In Review

Posted on by Astrid

Hi everyone. It’s the last day of the month and that means I’m joining Natalie for her monthly wrap-up. March was a tough month. As I say this, I hear a little voice in my head saying I’ll never be happy anyway as I’m so negative. One of my staff on Sunday said I have nothing to complain about because I get regular support workers and my day schedule is followed. I still wonder how much of my dissatisfaction is indeed due to circumstances that can be changed, such as my day schedule, how much is due to the inherent nature of my being multiply-disabled and living in long-term care and how much is my attitude.

In any case, early in the month I heard that my activity-based day schedule would be taking effect on April 1. That’s tomorrow. Unfortunately, on the same day, the staff’s hours are going to change and this, even though the literal hours they are in the home won’t be cut, means my support will be cut a little. We’ll see how that goes.

I tried to adapt to the new support hours already and this was incredibly hard. I also tried to myself follow a schedule with more meaningful activities. This was partly successful, especially with staff who are already able to help me get more meaningful activities done. For example, last week, one of the staff helped me create a unicorn-themed card for a former fellow resident from the intensive support home, who had her birthday that day.

Thankfully, one staff, with whom until then I’d only been doing dice games and going for walks, herself took the initiative to ask a colleague to orient her to the polymer clay activity.

I have been cooking and baking more than I used to. For example, I baked so-called “healthy” brownies that I fully intended on handing out at the monthly local brain injury meet-up. They weren’t all that good though.

Later, I found out I had a Trojan on my computer that came with the recipe manager app I used to download random recipes off Facebook into, including this “healthy” brownie recipe.

Before I found out I had malware on my computer, I had been obsessing over the idea of cooking vegetarian curries. Most of the recipes, I got off English-language food websites like BBC Good Food, so I’m not sure I’ll be able to use them. After all, though my English is quite good, my staff’s might not be.

Last Saturday, I cooked a delicious cauliflower, tomato and chickpea curry. This recipe was in Dutch, by the way.

Now that I look over this post, I wonder what made the month so tough, given that I once again did more meaningful activities than I used to. I do believe part of the problem is the fact that I’m still not adequately supported when I’m struggling. I mean, highs and lows are to be expected even when you’re having the proverbial time of your life. When people expect me to have a positive outlook because “I have nothing to complain about”, that is horribly invalidating. Life in the care system isn’t great and it isn’t meant to be. I don’t expect to ever rate my days higher than a seven out of ten, but when staff do have this expectation of me, it’s incredibly frustrating. I’m hoping something can be done about this.

Of course, this was also the month I finally realized I’ll never have an okay relationship with my parents. It’s tough realizing I never experienced a proper bond with my parents and even tougher to know that no-one can replace it. However, I do think I’m more capable than I used to believe. I’m not sure how I feel about that.

Three Wishes, Revisited

Posted on by Astrid

Hi all. Last Tuesday, I saw the Writer’s Workshop prompts for this week. Several of them spoke to me but I somehow didn’t give myself the time to actually write on them. Today, I’m finally back on the blog and I’m choosing the prompt in which you’re granted three wishes. I did a post on this topic already in 2020. Let’s see how things have changed over the years. What would I wish for now?

1. Unlimited door-to-door transportation. I listed ParaTransit access as a wish in 2020, but now that I’m actually using it for things other than getting to my wife, I realize that it’s not that having unlimited kilometers would solve my problems getting to places. I’d also need the driver to actually drop me off at the place I want to go to. Transportation, after all, is one of the reasons I don’t go to cerebral palsy meetings as often as I’d like, because they’re often organized at restaurants, which taxis can’t reach.

2. My ideal room/apartment within a care facility. In 2020, I wanted to be closer to my wife, but if I have my transportation desires covered anyway, that’s no longer a necessity. My ideal place wouldn’t be much larger than my current room, but it would have a private bathroom and its own kitchen, in which I could prepare my own food with assistance. It would also not be as close to communal areas as my current room is, because well one of my main problems right now is overload from all the sounds coming from the living room.

Looking back, I can’t believe I didn’t list more care hours as a wish in 2020, being that I didn’t have my one-on-one at the time. I do now and of course I wish for it to stay the same.

3. Improved physical and mental health. Don’t we all wish for optimal health? I listed it in 2020 too, as my first wish in fact. Since then, my physical health has improved in some ways and declined in others. For example, I’ve lost significant amounts of weight that I indeed needed to lose and as a result, no longer have high blood pressure. I can also walk for longer. On the other hand, my tremors have gotten significantly worse and I believe my cognitive functioning has declined a bit too.

My mental health, I think, is better than it was in early 2020. I hope it improves more though.

Now that I compare my wishes to the ones I listed in 2020, I see an interesting trend, in that despite better quality of life, my wishes are still largely the same. No, that’s not entirely true: they’re bolder, in fact. I wonder what this means.

Meaningful Activities #WotW

Posted on by Astrid

Hi all! No Weekend Coffee Share (at least, Natalie isn’t hosting) this week again. I love Anne’s Word of the Week linky for summarizing my week too. Maybe when Natalie hosts her coffee share again, I’ll do a combination of the two. That is, if I can figure out a word or phrase to sum up my week. This week’s phrase is “meaningful activities”.

This week was truly a good one overall. I’ll start with my spontaneous baking activity on Saturday. My staff and I had gone on a walk, but we didn’t want to stare at the wall for the rest of my long activity time slot, so she proposed we do a baking activity. I proposed to make caramel blondies, for which I’d bought the ingredients a few weeks ago already to use with another staff, who however wouldn’t say when we could make them. The blondies were extremely filling but good. Next time, I’m going to cut down on sugar a bit and add some white chocolate on top. I served the blondies to my fellow residents in the evening. One of them asked for days after that, when she learned that I had some left over, for more “Astrid cookies”.


On Monday, my staff and I went to the institution townhouse for coffee. We didn’t have our wallets with us, so we couldn’t buy any of the treats they offered (the coffee is free). However, one of the people behind the counter offered us a brownie that wasn’t good enough to be sold to share. My staff had only a small piece and I had most of it. It was delicious! I had planned to eat the last of the blondies that day, but had two and besides, I was completely stuffed already. I decided to offer them to the two fellow residents who aren’t at the day center during the day either.

On Tuesday, the same staff was supporting me in the afternoon again and, of course, we reasoned we had to go back to the townhouse with our wallets to buy something this time. We didn’t fancy another brownie, but we did have a look at some of the handmade items on sale. My staff bought some tea and I bought a bag of rocky road chocolates. No photo in the townhouse, but I did take an interesting photo of the bag on my nightstand.

Then on Wednesday, like I shared that day already, I crafted a polymer clay dice for a staff who was leaving. Today, I also have been claying, because one of the staff who’s been here forever but with whom I’ve never done a clay project, wanted to learn. It felt good being able to do this activity even though it was in the morning and I was a little cranky.

On Thursday, the staff and I rode the side-by-side bike to Twello to buy some things. I bought raisins, pumpkin seeds, sunflower seeds and corn waffles. We also needed a new mixing bowl, since I’d found out earlier that the one we used to have had a large tear in it. The staff offered to pay for it with the home’s debit card, which sounded reasonable, since it was the home’s bowl that tore. Not that I have a mixing bowl, but well.

Yesterday saw another trip to Twello to go to the market. When we were at the townhouse on Tuesday, one of the institution managers was telling us that he’s going to campaign for the upcoming local election at the market on Friday. I didn’t see him at the market, but I did get to talk to two other parties’ campaigners, both of who gave me some seeds to plant. I’m having to think on where to plant them, as my little yard has no flowerbeds.

Overall, this week was truly filled with meaningful activities. Since my new day schedule will (hopefully) take effect on April 1 and I’ll then be having two weekly cooking or baking activities, I’ve been looking at things to make then too. My wife inspired me to look into vegetarian dinners. Not that I’m a vegetarian or ever plan to be, given that meal delivery service meals suck even more without the meat than they do when it’s included. However, when I prepare the meals myself, I’d love to look at ways of adding flavor without meat or poultry. The idea is that usually I won’t have to cook for the entire home, so I can experiment without considering my fellow residents’ preferences.

A Good Mood

Posted on by Astrid

Hi all on this rainy Wednesday. I just found Esther’s writing prompt for this week, which is “mood”. Since I’m in a pretty good mood right now, it feels appropriate to write about it.

Yesterday, I had a meeting with my support coordinator and the behavior specialist who’s filling in while my home’s regular one is on maternity leave. As regular readers of my blog might know, we’re in the process of designing a new, activity-based day schedule for me. Initially, the draft didn’t appeal to me, because for one thing I’d wanted it to include time for me to have a cup of tea in the living room later in the evening. As those who’ve followed me for a long while will know, I introduced this cup of tea last summer and it helped me through a dark period. Of course, I’ve mentioned more than once that if a cup of tea is the only thing to lift my mood during a day or even week, that’s not really all that good. I mean, yes, it signifies that I’m not majorly depressed, but it isn’t particularly a sign of good quality of life.

My support coordinator yesterday told the behavior specialist about my daily positives and negatives, which I’ve been sending out to her and my assigned staff on a weekly basis. She mentioned that my positives usually include activities that have meaning for me, such as crafting, cooking, baking or the like. My negatives usually involve situations in which the staff don’t adequately support me based on my needs of that moment, such as when they place too much responsibility on me.

Yesterday, I for the first time in a while had a day in which I didn’t see any negatives. When I wrote in the Gratitude app in the evening, I even rated my mood as “good”. Not “great”, but I don’t expect to feel great. I usually rate my daily moods as “okay” at best.

I listed several positives yesterday too. One was my having made another batch of homemade granola. This takes only about half an hour total, but it significantly lifts my mood to make it.

Similarly, on Monday, we had twenty minutes left of my long activity time slot in the afternoon after having gone on a walk and having had coffee at the institution townhouse. My staff initially proposed we play a dice game, but I suggested we try making a simple bracelet. My staff questioned whether we’d have enough time to finish this, but I challenged her by saying we could at least try. Usually, I’m the one suffering from inertia because I fear we cannot finish an activity within my allocated time slot. That’s one reason I proposed doing a more activity-based day schedule, of course including approximate times for the activities. Anyway, guess what? We finished the bracelet on time!

Today, if nothing major happens to diminish my mood, I’ll also have a day with no negatives. This morning, I started off by feeling a bit stuck by fear of there not being time for an activity. Thankfully, I pulled myself through it and guess what? I made not just the one thing out of polymer clay I’d wanted to make, a rolling dice for a staff who’s leaving and with whom I used to play dice all the time. I also started on a project for a staff who’s just become a father. Of course, since the dice had to be painted, I didn’t finish it right then, but I did in the afternoon, just on time for the staff’s goodbye.

My support coordinator is definitely right that meaningful activities are what help me get in a good mood. Isn’t that normal though?

#WeekendCoffeeShare (March 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s 7:30PM as I start typing this, so I’ve had my last cup of coffee for the day and will take a break from writing this post at around 8PM to have my evening fizzy drink. Actually, Dubbelfrisss, which I generally have, isn’t very fizzy, being that it is only slightly carbonated. That’s a good thing, since I can’t stand actual fizzy drinks. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been incredibly warm all week with daytime highs above 15°C each day. Today we even had a daytime high of 18°C. It’s been sunny for most of the week too. I know, climate change and all and we’re probably getting summertime temps above 30°C, but for now I love this weather.

If we were having coffee, I’d also proudly announce that I broke my exercise record on my Apple Watch again. Yesterday, I got in 190 exercise minutes, both by walking and by biking to Deventer.

If we were having coffee, I’d tell you that I rode the side-by-side bike to Deventer twice this week, both times looking for new clothes. On Tuesday, I bought a few jeans and a blouse. Yesterday, I initially wanted to buy a blouse and a shirt, but didn’t end up buying those when I found out they were rather light-colored. So is one of the jeans I bought on Tuesday, so now I’m afraid I’ve stained it beyond cleaning already. This once happened with a pair of off white pants I bought with a staff several years ago and my wife said wise staff won’t let me wear light-colored clothes because of the risk of me spilling coffee over them. I told the staff I went clothes shopping this yesterday and she said I could put a napkin on my lap to prevent this. The thing is, I only need to forget this once for clothes to be ruined by coffee stains. I’m now unsure as to whether I was wise even having gone clothes shopping with her.

If we were having coffee, I’d tell you I’ve been playing around with AI a bit. Last Saturday, when I shared the Warmies unicorn soft toy on here, I tried to take several more pictures, but none were better than the one I’d posted. Then I decided to ask CoPilot to edit the image to make the unicorn stand out more. I don’t know whether the original picture was recognizable as a unicorn, but I loved how CoPilot recreated it.

For reference, here’s the original photo I took.

If we were having coffee, lastly I’d share that I finally saw my new, activity-based day schedule, to be taking effect on April 1. To be honest, it’s a bit disappointing, in that my assigned staff just added the activities I’d proposed to it and that’s it. How this could take months of “thinking” to take effect, I don’t know. On top of that, the new schedule will take effect on the same day the home will start having a new staffing schedule too. My support coordinator told me there’s no shortening of hours, but at an important time for me, there is. You see, when I proposed my activity-based day schedule, I’d added my daily cup of tea at around 9PM into it, both to make the schedule more aligned with reality and because that cup of tea truly helps me make it through the night without support. Unfortunately, it’s not in my new day schedule and staffing will be cut at 9PM too. I for clarity’s sake don’t need one-on-one attention then, but it does help when staff keep an eye on me. My support coordinator, who told me about the staffing changes and new day schedule, said I can’t expect everyone else to be in bed by 8:30PM because I want my cup of tea and there’s not enough staff to keep in touch with me and help the others to bed at the same time. No, I can’t, but it’s not me who cut those hours. Several staff have told me I’ll have to wait and see how things go and no-one is prohibiting me from having a cup of tea, but then why can’t it be in my day schedule?

Thankful Thursday (February 19, 2026): I Still Have Hope…

Posted on by Astrid

Hi everyone. Today is Thursday, so I thought I’d try to create a post focusing on thankfulness. It’s been a rough week with me having a zillion ideas of things to do but no way to put them into action. I’m still struggling with the lack of structure in my day schedule, which means I have no way of planning any activities.

That being said, I keep having hope. Sometimes I feel that hope is my enemy, in the sense that it’s the only thing keeping me alive and what if it’s idle hope? What if the powers-that-be are unwilling to help me create a more meaningful life and they’re just keeping me in the dark about it because they know things might take a turn for the worse if they tell me?

Let’s focus on gratitude though. Today, I cut up the bell peppers me and my fellow residents had as a side with our lunch. I also went shopping for groceries with a staff. I bought some ingredients for making smoothies and breakfasts, as well as a poke bowl I had for dinner today. That was good.

This staff used to work here until last summer and was one of my favorites. She occasionally still subs here. I feel a little guilty having been so vulnerable with her today as to show her that, in all honesty, I don’t feel my life is meaningful at this point. Thankfully, she did have her regular coworkers write down how much I’m struggling.

I also wrote an E-mail to my assigned staff and support coordinator this evening. My assigned staff is on sick leave again, but she said she’d check her E-mail regularly. I explained the thing I’m struggling with most again, ie. the fact that I experience a lack of meaningful day activities despite sufficient one-on-one hours. The most frustrating part is the fact that it’s not about budget or staffing, so that I honestly don’t see why I wouldn’t have gotten a more structured day schedule months ago.

My support coordinator said a few days ago that she’d get back to me about the issue on Sunday. I doubt anything significant is going to become of it, but the sliver of hope that things might improve, is keeping me going.

For now, what is also keeping me going, is actually thinking up ideas of things to do when the staff are more willing and able to help me create more meaningful activities. Here, I said “when”, not “if”. Does that mean something?

Don’t Get Me Started… #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “Don’t get me started”. Oh my, don’t get me started… or I’ll rant forever.

I have this habit of ranting about my care to whoever will listen. Not even about my current care, but about my care at the intensive support home. This afternoon, I was telling a staff who’s just quit smoking that, now that institution grounds are officially a non-smoking area, I no longer permit staff cigarette breaks during my activities.

I say that grounds are “officially” a non-smoking area because, in reality, no-one listens and even the higher-ups smoke on grounds.

I am a non-smoker and yet I understand the fact that clients want to smoke in the yard. Who are the higher-ups, whether they abide by the rules or not, to prohibit smoking in our own home? Well, outside of it, of course, because yes the non-smokers have a right to a smoke-free home.

Staff, however, are usually the ones who smoke the most and I don’t fully understand that. I mean, yes, it’s an addiction, but it’s also a habit. And, besides it being just plain yuck, staff are taking extra breaks in order to meet their “needs”.

Back to my not permitting staff to take cigarette breaks anymore. Every staff here understands, even the hardcore smokers, but back at the intensive support home, not so. I told this staff about a staff doing my morning activity time slot. At the start of it, she said that it’s long, right? It’s ninety minutes. “Can I have a cigarette?” I told her to stand on my balcony and discard her cig safely. Half an hour later, I was doing a clay project. “You’re now busy with the clay anyway. Can I smoke again?” I reluctantly let her use my balcony again. Half an hour later still, an hour into my activity, she was like “I’m going to need to discuss something with a coworker”. And off she was. When she came back ten minutes later, I told her I didn’t like her essentially taking three breaks during a ninety-minute support moment. “But you don’t have one-on-one,” she ranted, saying that with my “just having extra care” this means she could leave me alone whenever she needed to. And besides, she didn’t need to offer up an explanation to the client for her decisions. Well guess what? Yes, staff do need to justify their decisions to me when these affect my care.

And don’t get me started on the difference or lack thereof between one-on-one and extra care. They’re both just sums of money the institution receives for a client. Yes, some clients have more one-on-one hours or extra care hours or whatever than I do, some even having 24-hour one-on-one. However, these sums of money are based on average amounts of care a client needs. If a client has 24/7 one-on-one (which none of the clients at that home had), it means they on average need one staff with them all the time, but sometimes two and sometimes briefly none. I at the time had seven hours of extra care/one-on-one support a day and my support coordinator claimed that my day schedule at the time spanned nine hours. There are various reasons why firstly this wasn’t true and secondly it doesn’t mean I had two hours of support that wasn’t being paid for, but don’t get me started on that…