Share Our Life (March 2025): An Average Day

Posted on by Astrid

Hi everyone! Today I’m joining Share Our Life, a linky with a monthly theme. This month, it’s to describe an average day in your life. Unfortunately, taking pictures is not part of my average day. I really want to change that, but for now, just text will have to do. I didn’t pick a specific day to describe.

I usually wake up at around 7:30AM when the staff are helping the resident in the room next to me with her morning routine. Since my first support moment isn’t until 8:15AM, I usually have a little snooze.

8:15AM is when my staff come to wake me up and help me with my morning routine. I hate showering, so don’t do it each day. I get dressed and have breakfast – usually quark with muesli and blueberries. My morning routine, including breakfast, can take up to an hour.

At 9:15AM, I’ll usually lie back in bed for a little slumber while listening to music on my music pillow.

My first activity time slot starts at 10AM. I sometimes extend my lie-in until 10:15 or 10:30AM. I start my activity time slot with coffee and then I’ll usually either play a card or dice game or go for a walk.

By 11:30AM, my staff leave to prepare my lunch. I usually eat two slices of bread with peanut butter and a cracker with speculoos (Biscoff). I also consume a serving of veg with my lunch. My lunchtime is at noon.

By 12:15PM, I’m done eating and will be on my phone for a bit, reading the news or texting or calling my spouse, who is then usually taking a break.

My two-hour activity time slot starts at 12:45PM. This time slot was originally intended for more time-consuming activities such as a bigger polymer clay project, going out to the nearby town, etc. Occasionally, I’ll use this time slot for cooking dinner for myself and my fellow residents. Often though, I can be found walking grounds with my staff. I’ll end my activity time slot with coffee, although I might also have a cuppa by 1:45PM already.

My staff go into handover at 2:45PM and I’ll most days use up the 45 minutes until my next supported moment with some online activities. By the way, handover doesn’t take 45 minutes, but it’s not like I need one-on-one all of the time.

During my 3:30PM activity time slot, which lasts an hour, I commonly play a dice game. I sometimes also go for another walk. I have unsupported time again for 30 minutes after this while my staff help the other clients with their dinner. My dinner is at 5PM. I am a rather fast eater, so am frequently finished by 5:15PM. My staff have their break at 5:30PM.

At 6PM, my final activity moment for the day starts. I have an activity list, from which I can choose what we’re going to do. What we’ll do, is too often related to the staff supporting me. I really want to change this, but it’s hard.

I’ll have my final coffee at 7PM and then have unsupported time again until it’s time for my late evening meds at 8PM. I’ll most commonly use this time and the rest of the evening for blog-related activities.

Like I’ve shared many times, I usually have Dubbelfrisss in apple-peach flavor with my evening meds. I also will eat a serving of fruit. Then I’ll be told which staff will be in the home the next day. Some days, I’ll hang out in the living room for some time then, while at other times, like today, I’ll head straight back to my room and go online. I used to be phoning my spouse a lot late in the evening too, but now we’ll often talk at other times.

At 8:45PM, I’ll sometimes have a little snack. Then I’ll go online again until my staff come to supervise me brushing my teeth and to close my door to the yard at 9:30PM. After that, the staff will leave the home and I’m supposed to rely on the night staff in the main institution building for support. My fellow residents all go to bed before then, but I’m allowed to stay up. I’m a true night owl, so most days it’ll have been past 11PM before I’m in bed.

All this sounds incredibly boring and unproductive. I really want to put my unsupported time to better use, because currently most of the time I just end up scrolling.

February 2025 In My Kitchen

Posted on by Astrid

Hi everyone! A while ago, I discovered Sherry’s In My Kitchen linky. As most of you know, I don’t have a kitchen, but of course my care home does. I’m using this opportunity to share some thoughts about the foods I’ve prepared and/or consumed lately. Do polymer clay-related musings count too, since polymer clay is cured in an oven? Just kidding (a bit).

Last week, like I think I shared, I visited the next town’s market and bought olives, fried chicken and peppers. I also bought arugula at the supermarket. My staff whipped up the most delicious salad out of these and some carrots that were in our fridge. I had some the next day as well. Sadly, I was under the impression that the staff had used up all peppers, only to be told yesterday that there were still peppers in the fridge. Those had by then gone bad.

I also bought blueberries and have been adding those to my muesli and quark that I eat for breakfast almost each day.

I’ve also been making smoothies lately. For example, a few weeks ago, we had lots of bananas that were on the ripe side, so we chose to whip up a smoothie with them. My current blender has only a 1 liter container, so at first I used to make only about four cups of smoothie and share them with my fellow residents who also stay up later.

Yesterday, a staff offered to help me prepare a smoothie for the entire home that we could use in place of our evening soft drink. Looking back, creating more smoothie than my container can hold is as simple as pouring the smoothie into cups then reloading the blender. The staff peeled and cored the apples and pears, something I think I could’ve helped with too, but oh well. I chose to add cinnamon, cardamom and clove, as well as soy milk as a liquid. The smoothie was absolutely delicious!

For the upcoming month, I’m really hoping to do more in the care home kitchen. Honestly, I feel I could easily be whipping up my own salads and do more in the smoothie-making process. I’ve also been looking at treats and even main meals to cook. I mean, I have the two-hour supported activity time slot in the afternoon and this often is currently spent on nothing more than a walk. I have been nagging my staff for a more structured activity schedule for months, but this seems to be rather difficult. One can always hope though.

How I Coped With Losing My “Job”

Posted on by Astrid

Hi everyone. This week, one of the prompts for Writer’s Workshop is to write an essay titled “How I coped with losing my job”. I don’t do well writing fictional essays and have never had a “real” job, in the sense of a paid position or even volunteer work. I did, however, once “lose my job”, in that I got told the day center I went to couldn’t keep me there anymore.

This happened sometime in January of 2018 at my first day center with my current care agency. They had had me there for eight months, in two different groups, but when I was struggling to cope at the second group, they could no longer serve me or so they said.

I felt really distressed about this. The most frustrating aspect was the fact that they blamed me for no longer being suited to the center, while in reality, three new clients had been accepted into my group and no additional staff had been hired. I remember the reason they said it was me being the problem, not the new clients, was the fact that I’d been having meltdowns shortly before they arrived. Now I know that any anticipated change will cause me distress and that doesn’t mean I’m just a problem client. However, in hindsight, I’m pretty sure they wanted me gone sooner rather than later all along, for the simple reason that I don’t have an intellectual disability.

Thankfully, I wasn’t told to leave on the spot, but got time to find a new place. I initially had no clue how to, but did remember that, in 2010, I had been helped by the Center for Consultation and Expertise (CCE). I told the staff that I wanted to involve them again.

This was a bit of a hassle, as my community psychiatric nurse from the mental health agency said I’m far too high-functioning for the CCE. I applied nonetheless and got an orientation meeting in May of 2018.

In the end, I didn’t need the CCE for finding a new day center, but the consultation was what led me to accept that living independently with my partner wasn’t working and I needed long-term care.

I did feel intensely frustrated, like I said, at being “fired” from this day center. However, in the end, I don’t blame the staff, who were just powerless in the face of my challenging behavior. I think the manager, who didn’t look beyond my psychiatric diagnoses, is partly responsible. So was the psychologist from the psychiatric hospital, who more or less made the manager accept me on partly false premises.

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.

Vignettes About Unicorns

Posted on by Astrid

Hi everyone. Today I’m joining Writer’s Workshop. One of the prompts is to share at least five moments of your life (not events, but merely vignettes) that are somehow related. I, for some reason, was immediately drawn to the theme of unicorns. Let’s see what I can come up with.

1. I remember having a unicorn My Little Pony figurine as a child. In fact, that’s a lie, as I think it was my sister’s, but I loved her anyway. In my memory, she was light purple, but I could’ve misremembered that, since my favorite color is lilac.

2. Last October (I think), I got a unicorn soft toy from my spouse as a thank-you gift for my support throughout our relationship and particularly over the past several months.

3. The other two unicorn soft toys on my bed, I bought at the fall fair here on institution grounds last October too.

4. Which reminds me, I have a lonely unicorn soft toy sitting in the soft toy cabinet. I got that one for Christmas at the last day center I attended while living with my spouse.

5. Oh wait, no, I have another unicorn soft toy in the cabinet. I got that one when leaving the care facility in Raalte for the intensive support home. Oh, how I miss being in Raalte still.

6. Now enough with the soft toys. The first unicorn I created, in July of 2021, I did entirely from a YouTube tutorial. I gave it to my spouse, who probably still has it.

7. I remember crafting my first unicorn at the intensive support home with my assigned staff. It didn’t turn out as good as I’d liked, but it was okay.

8. I gifted her my best unicorn I created while there when I left. Too bad she ignores me now…

9. When I left the intensive support home, I gifted each of my fellow residents a small cutter-created polymer clay unicorn.

10. I used for it a cutter I’d gotten for my birthday last year from my parents. My spouse had also gifted me unicorn-themed cutters at some point, which I originally intended to use.

11. I read my first unicorn-themed book a few years ago. That is, I probably read some in childhood too but not sure since they weren’t as popular as they are now. The book was a short picture book called First Day of Unicorn School.

12. My current unicorn-related read is the second book in the Unicorn Academy series by Julie Sykes. Oh wait, that’s not exactly a memory I’m sharing…

13. I can’t remember when I started calling my spouse “head unicorn catcher”. The reason is the fact that my spouse’s truck route is named after a city which has the unicorn as its symbol. Oh wait, that wasn’t really a memory either.

But I got to thirteen. So I’m allowed to share this post with Thursday Thirteen too. So if my post doesn’t meet the criteria for Writer’s Workshop, at least it meets the criteria for that.

Reminders When I’m Feeling Like Life Is Pointless

Posted on by Astrid

Hi everyone. Like I said on Saturday, I’ve been struggling lately. It’s been so bad that I’ve actually been considering talking to my doctor about options for medication. I mean, I’ve been tapering my antipsychotic aripiprazole (Abilify), which is sometimes used as adjuvant medication to treat depression. However, I honestly struggled with mild depression already before starting my taper.

That being said, I really need to remind myself of the things I have in life. For this reason, I started a list of positives and negatives for each day that I’ll send to my second assigned staff weekly. She is more socially adept and empathetic than my other assigned staff, which is why I have her to discuss my personal issues with. Anyway, I allow myself to list the negatives too, which sometimes outweigh the positives, but the last few days, the positives have outnumbered the negatives.

For instance, today I had as a positive the fact that I finished a pair of polymer clay earrings. Okay, I haven’t yet seen how they turned out, but who cares? The process is more important than the outcome. I also listed as a positive the fact that I had a good online meeting with the regional branch of CP Netherlands, the Dutch cerebral palsy alliance.

I listed one negative, ie. the fact that I got slightly stressed out when my male assigned staff asked me some questions about swimming. I’m supposed to go swimming in a group on Thursdays but this hasn’t happened yet due to staffing issues. I have tried to jump through all kinds of hoops to accommodate the staff and felt like I was being pushed around. Thankfully, tomorrow (Wednesday), it turns out, I’m allowed to try out swimming with my fellow clients.

I think that, when I’m in a downward spiral and particularly when I feel like my world is becoming smaller and smaller and life is pointless, I need to remind myself that there are still lots of things I can do even though I’m at home a lot. I could read, watch YouTube videos, blog, scroll on social media, do all kinds of crafts. Honestly, in fact, when a staff is entertaining, even a dice game can be enjoyable. And the entertaining factor is a two-way street. After all, I noticed this with a staff yesterday with whom I hadn’t gotten along a few weeks back. He was about as unengaging as could be and left 15 minutes early, but then again I treated him badly first by refusing to explain my routine because “it’s not my job to train temp workers”. It isn’t, technically speaking, but I could’ve been kinder. Yesterday, he actually made our game of Yahtzee fun.

I do still think my world could be enriched. I also feel this isn’t a cure-all for my depressed mood. Some of it comes down to grief, too. Grief for having lost the support I had in late 2021, when I was 95% sure I wanted to stay in Raalte. “Make that 98% please,” the manager said. Not even half a year later, it turned out, either she or some other people involved there were glad I was asking to leave. That angers and saddens me to this day, but wallowing in these feelings won’t help. Involving myself in positive activities might.

I’m joining #WWWhimsy.

What, When, Where, With Whom and What After That?

Posted on by Astrid

I have been struggling with staff randomly switching up who will support me, my day schedule being changed for various reasons, etc., a lot lately. This causes me a lot of stress. Like regular readers of this blog may know, I have about eight hours of one-on-one support a day, divided into blocks between 8:15AM and 9:30PM. Between my support moments, I have unsupported time slots that range in length between 30 and 45 minutes.

I often struggle with my unsupported time, looking at my watch every few minutes to see whether my support staff will be coming yet. I also look at my watch a lot during my supported times, because I dread the moment my staff unexpectedly say they’re leaving.

Last night, I thought up a way to possibly solve this issue: to organize my day schedule more by activity. We need to watch out this doesn’t become the stupidly vague day schedule my former support coordinator at the intensive support home gave me. After all, when the day schedule says that we’re going for a walk and doesn’t specify how long that walk will be and there are absolutely no timeframes related to the activity, some staff will take me for a three-minute walk around the home while others will take me for an hour-long walk. Then, if after the walk I’m supposed to have unsupported time until lunchtime, the length of my unsupported time could range anywhere from like 30 minutes to nearly an hour and a half. This was actually what my day schedule back at th e intensive support home was like.

What I’d like instead, is to know what, when, where, with whom and what after that. To put it more concretely, I’d like to discuss during my morning routine who will be supporting me for the rest of the morning shift (and after handover for the evening shift), what we’ll do, including what I’ll do during my unsupported times, and to put those activities on a tactile “picture” board (with Braille instead of pictures). I think knowing what I’ll do during my unsupported times will lessen the number of times I look at my watch too. It also will mean I know who’ll support me for my activities, so that I know whether I feel comfortable with them doing certain activities with me or not.

I’m pretty sure this is all wishful thinking. One of the staff, who happens to be one of my “favorites”, didn’t think it was a bad idea. Then again, my assigned staff said I was lucky that I heard 25 minutes in advance that he was going to be there for my early afternoon activity, because his shift doesn’t start till fifteen minutes before that activity starts and if it was up to him his morning shift colleague would’ve conferred with him prior to telling me that he was coming. That would mean I’d get at best ten minutes notice. According to my assigned staff, no-one specified how much preparation time I need, so technically speaking five minutes should be enough. I think that’s rather, well, literal-minded at best and purposefully twisting the truth at worst.

This post was a rather long contribution to this week’s Stream of Consciousness Saturday, for which the prompt today is “watch”. I usually don’t write pieces that are this lengthy and in fact struggled to maintain stream-of-consciousness style.

What “Playtime” Means to Me #Bloganuary

Posted on by Astrid

Today’s prompt from #Bloganuary asks us about playtime. What does “playtime” mean to me? Do I play in my daily life?

Honestly, it depends on how one would define “playtime”. I, as someone who does not work, could consider my day activities “playtime”. I mean, there are individuals who do work-like day activities, but I don’t. Indeed, I’m pretty sure I consider working with polymer clay “playtime”.

For 2024, I am considering restarting some adapted version of The Artist’s Way. I mean, I cannot do Artist’s Dates completely by myself, but I can be more creative doing them than I would otherwise be. As Julia Cameron says, doing the work of the Artist’s Dates and other tasks in the book is really play, and I’m pretty sure I agree.

I also sometimes do actual things considered “playtime” by most adults, such as go on swings or roundabouts. We have adult-size playground equipment on institution grounds that I occasionally go on.

My Hopes for 2024

Posted on by Astrid

Hi everyone. As regular readers of my blog know, I don’t do New Year’s resolutions, instead calling them “hopes”. This is just an excuse not to have to take responsibility, I guess, but oh well. I love writing them and looking back at them after a year to see how well I did. Last year, I did participate in #WBOYC, of course, but honestly I never looked at my hopes for 2023 when doing my monthly reflections. Oh well, maybe my first not-quite-resolution has to be to look back at this post when reflecting on the month. Here goes.

1. Get back on track with respect to healthy’ish eating. I did manage to get to a healthy BMI in 2023. That is, I’m pretty sure with all the New Year’s treats, including more “oliebollen” than I told my dietitian I liked, I’m now back across the line to overweight (I was only half a pound below that line last week). I know that with some cutting back on snacking, and it doesn’t even have to be drastic, I can lose the excessive pounds I gained over the holidays. More importantly though, for the remainder of the year, I’d like to maintain a relatively healthy diet. After all, sugary ttreats and high-fat foods are bad for you even if you’re at a healthy BMI.

2. Get back into a regular movement routine. Though I did excellent for the first half of 2023 and pretty well for most of the second half too, like I said yesterday, I wasn’t moving as much over the past month or two as I would’ve wanted to. This year, I obviously hope to meet my movement goal each day, but I’m not sure that will be a realistic goal, as it wasn’t in 2023 and that’s not just because of lack of motivation. I’d also really like to find another way of exercising besides walking, either swimming again or something else. I seem to remember we do have gym equipment somewhere on institution grounds, so maybe that’s an option.

3. Write more regularly. Last year really sucked in the blogging department. I really hope to change that and get back on track with blogging more often.

4. Broaden my horizons in the crafty department. I hardly touched on this yesterday, but the last couple of months were really positive in this respect. For one thing, I started creating figures, such as the gnome and Santa, without consulting YouTube tutorials. For another, on Saturday, I did something really cool: I crafted a unicorn completely independently! I did initially leave black streaks on the head from touching it while trying to attach the eyes, which the staff had to clean up with alcohol. Other than that, I did everything completely without supervision or help.

In 2024, I really hope to be more creative, try out more things on my own (without the expectation that I’ll lose my one-on-one) and generally have more fun claying and maybe doing other crafty things.

5. Explore other day activities. In 2023, I wanted to expand my horizons with respect to my day schedule, moving beyond 60 minutes at a time, beyond my room and beyond one-on-one. The first was a massive success, as I now have a great day schedule (which of course took me moving out of the home I lived in last year, but oh well). The second and third, I’m not 100% sure I want to achieve, actually. Rather, I’d like to explore meaningful activities, whether these can be done in my room or elsewhere, on my own, with my one-on-one or in a group.

6. Get settled into my current care home, generally. I really hope to get more comfortable here and start building up a trust-based relationship with some staff.

7. Improve in the mental health department. This, for me, means stabilizing with respect to my trauma-related symptoms. It also means getting closer to a proper med combo and dosage. In 2023, I didn’t change any of my meds or dosages, which was frustrating as I did notice some increase in possible side effects. I’ll have a meeting with the intellectual disability physician to discuss my meds on the 15th.

8. Continue to work on my relationships and supporting the people I love. Particularly, my marriage evolved in a positive way in 2023 and I would really love to keep it as strong as it is going forward.

What are your hopes for this year?

Sunny Sunday (November 26, 2023)

Posted on by Astrid

Hi everyone. Today I’m feeling all over the place. It’s been like this for most of the week. I’ve been struggling with lots of unfamiliar staff sent out to do my support and my day schedule being screwed up for various reasons. However, I’m going to focus on the positive. I’m joining in with Sunny Sunday. Like Leigha, I am going to focus on the things I’m grateful for, from the general to the specific. I am using Maslow’s hierarchy of needs as a guide.

1. Physiological needs: Food. Particularly, the fact that we had French fries yesterday (oh wait, that’s not a need). My relatively good physical health. A roof over my head.

2. Safety needs: my financial security. The fact that my staff did try to get me a familiar staff person for my one-on-one at least part of the time (although it was after I’d had an outburst).

3. Love and belonging needs: my spouse, who phoned me this evening despite having a headache. A visit from my mother-in-law on Tuesday.

4. Esteem needs: my new day schedule, which will take effet tomorrow, giving me more time to engage in activities I enjoy. Well, technically it’s not more time in total, but the day schedule is less cut up into small parts, so I’ll have a larger time slot in the afternoon for something like polymer clay.

5. Self-actualization needs: renewed motivation for actually doing something creative. It hasn’t yet formed into something concrete, but I’m working on that.

What are you happy about?