I Want to Create #SoCS

Posted on by Astrid

I haven’t been very inspired to create lately. Last Monday, this topic was on my mind when discussing how I’m doing at my current care home. I sometimes try to blame lack of time or familiar staff to help me create as reasons for why I hardly work with polymer clay anymore. This is indeed a factor, but it’s not everything. I’m probably also experiencing a bit of a decline in my creativity and general cognitive state. Then again, if I don’t nurture this creative side of mine, I will only deteriorate further. And, although if I had all the mental and physical energy in the world, I’d really like to be able to be more independent in other areas, creativity is what I really want to work on.

Thankfully, my crafty spirit isn’t completely gone. In fact, I believe that I still can ignite this spark of creativity that is the recognition that I want to create, so that it will become a massive flame of artistic expression.

It wasn’t even for this reason that I decided to create a gnome out of polymer clay yesterday. It’s my spouse’s birthday tomorrow and I’d be visiting my in-laws in celebration of it today. My spouse has a birthday wishlist and had already guessed correctly the gift I’d selected off of it, so I wanted a handmade gift in addition. My spouse has a large collection of gnomes, so it’d be only logical that I’d create one out of polymer clay.

Polymer clay gnome

I actually was more creative than I normally am, as usually I follow a YouTube tutorial except with my unicorns. This time though, I created the gnome completely by imagining it. The only thing I don’t like about it, is the fact that I forgot to paint a white dot in its eyes to make them look a little more alive.

This post was written for Stream of Consciousness Saturday, for which the prompt this week is “create”.

In an Ideal World

Posted on by Astrid

In an ideal world…
I’d get all the care I needed,
From all staff I trusted.

I’d be able to engage
In activities I enjoy-
Crafting, baking, walking, swimming.
Without a care in the world.

I’d live closer to my spouse
If not together.

Sigh…
In an ideal world…

This post was written for Sammi’s Weekend Writing Prompt, which this week is “ideal”. I realize that my dreams for an ideal world are a bit childish and rather self-centered. The piece was based on the thing I at one point told staff at my old home: that, in an ideal world, I’d get one-on-one all day long. This isn’t actually true, since I need alone time to read and blog and phone my spouse, for instance. However, I do feel there are ways in which my care could be improved. Some of them might be realistic, while others fall into the category of “in an ideal world”.

September 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. September was a true rollercoaster of a month. Let me share. I am joining in with What’s Been On Your Calendar? (#WBOYC).

The month started with me being notified by my support coordinator for my now old home that I’d be moving to my current care home on the 18th of the month. The boxes arrived the next Friday and I started packing. I had a visit at my new care home on the 15th, which my mother-in-law also attended. The new staff seemed nice, but I did feel overloaded having coffee in the living room.

My move went about as chaotically as could be. For one thing, institution transport weren’t available that day, so my old support coordinator had to move most of my stuff, the rest to be moved the next day. For another, the staff here at my new home weren’t prepared with an extra staff member when I moved, so my old home’s staff had to help me get settled.

Handover also went rather frustratingly, so I was happy when my old home staff pulled away after a day. Only then began the trouble with my day schedule. I had been informed by my old home’s behavior specialist that the intention was to keep my day schedule mostly the same as at my old care home while I adjusted. This wasn’t to be. In the first week, at least three adjustments were made to my day schedule, all cutting my hours, and several more changes were not put on paper but were implemented in practice. The most frustrating changes took place in the early afternoon, including a 60-minute group activity time slot. I tried to make it work, but was often too easily overloaded, leading to extreme irritability throughout the day.

Thankfully, yesterday my assigned staff, after talking to the manager, informed me that I would be allowed a one-on-one activity time slot during the early afternoon for now anyway, during which I can do something creative. We’ll have to see how this all works out once my one-on-one has to be renewed in November.

Today, in an attempt to celebrate my time to spend doing crafty activities, I created my first polymer clay unicorn while at this home. I would’ve been able to finish it within said activity time slot had we not also been looking at recipes for baking and put my laundry in the washing machine. Thankfully, my one-on-one staff for this activity time slot was able to come back at a later time and finish the unicorn with me.

Overall, like I said, this month was a true rollercoaster with lots of ups and a few deep downs. Things are looking up now though.

#WeekendCoffeeShare (September 23, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare. I’ve long had my last cup of coffee for the day, as it’s 9PM. In fact, most people here at my new care home are in bed already. I guess I’ll have just water to offer you now, sorry. Let’s catch up anyway.

If we were having coffee, I’d start out by moaning about the weather. Fall has well and truly set in here. The temperature hardly got above 20°C at all this week and most days it didn’t get above like 17°C. Moreover, unlike the heating in my old care home apartment, which was set to an uncomfortably warm setting all year round, this room’s heating seems to be stuck on the cold side.

If we were having coffee, then I’d post another petting zoo picture. This one is of the birds once again. Did I mention that my new care home is like a two-minute walk from the petting zoo?

If we were having coffee, then I’d share that I’m adjusting better to living in this care home than I was to living in my previous one. Like I mentioned on Thursday, I started working with polymer clay, in fact. I haven’t put anything into the oven yet, as I first need to test the oven temperature before subjecting my precious projects to it. However, I’m happy to report I already finished two simple pieces: the planet charm I mentioned on Thursday and a flower.

In addition to working with polymer clay, I have created a shower gel (from just a base and essential oils) and made a bracelet. I did play card and dice games too. I didn’t walk as much as I used to at my old care home, but that’s okay.

I am still struggling with mornings and early afternoons, but I’m giving it a chance to work out. For example, yesterday I came up with the idea of watching children’s stories on YouTube when I have my group activity time. I normally watch those in English, which of course the other clients can’t make sense of, but I could definitely find Dutch children’s stories on YouTube too.

If we were having coffee, lastly I’d share that I bought another collection of journaling prompts that I’d really been looking forward to on Tuesday, only to find out that the actual prompts are probably handwritten or something inside the Kindle book and I can’t access them using my screen reader. This is a relatively common occurrence with Kindle books and I honestly feel that Amazon shouldn’t claim screen readers are supported in that case. Oh well, I have tons of other prompts to choose from.

Day Four

Posted on by Astrid

Today is day four in my new care home. On day four in the home I moved to last year, I was forcefully “helped” (more like dragged) to my room, left alone for most of the shift and expected to almost completely independently walk around the home because “the more independent you become, the less bothered you’ll feel by us [= staff]”.

By contrast, today, I made my first simple polymer clay creation, a planet charm. I tried my hand at polymer clay at the old care home for the first time after two weeks, but it was discontinued because it took too much time. Then I couldn’t work with polymer clay again until my day schedule was created in December. In other words, I did something today I couldn’t do at my old care home until significant improvements were made.

Should I compare my current experience to the improved experience at my old care home? No, I don’t think so. After all, I’m still adjusting here, something I never did there. Chances are things will improve here too as I learn to adapt or my staff adapt to me or both. I hope so.

Because, to be honest, it’s better than my early days at the old care home, but I’m still struggling significantly. For one thing, my one-on-one, despite what the behavior specialist responsible for my old care home had said, did get cut. It started today and this meant I had to spend a significant amount of the day either in the living room or alone in my room. I am giving it a serious chance of working out, but it’s really hard. Hopefully, I will be able to acknowledge when I turn out to be capable of handling more than I expected and the staff will be able to accommodate me should I not be able to.

#WeekendCoffeeShare (September 16, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. I just had my afternoon coffee, but will probably not finish this post in one go, as I have an activity moment again in half an hour. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. We’ve had pretty nice late summer weather here with temps rising to between 20°C and 25°C during the day. Next week, we’re supposed to get rain and then I’m pretty sure it’s over with the warm weather, although October can occasionally bring days when the temperature reaches 20°C too. I love telling tales of the day, about five or six years ago, when we had a daytime high of 27°C here in mid-October.

If we were having coffee, then I’d talk about my walking and other exercise. I went swimming on Wednesday. It’ll probably have been the last time for now, as I’m moving to the new care home on Monday, although the swimming instructor did say my new home’s clients go swimming too.

I went on the stationary bike yesterday. Other than that, my physical activity has been hit and miss. Some days, I got in over 10K steps, while on other days, I hardly walked at all.

If we were having coffee, I would however share that, on one of my walks, last Tuesday, I visited the institution petting zoo and took some lovely pictures. The first picture shows the petting zoo’s cat, Macho, on a stack of hay.

There also is a large aviary with parakeets in it. Here are two photos of the birds in their cage.


If we were having coffee, finally I’d tell you all about my visit to my new care home. I went there with a staff and my mother-in-law. Since this staff has been pushing me towards independence more than I can handle lately and since she’ll be doing handover too, I was disappointed that she’d be attending the visit too. After all, that’d mean I wouldn’t be able to talk to my new staff about my needs without her overhearing.

When we got to the home, we were greeted by the man who will be my new assigned staff, same one who’d been talking to my mother-in-law about the color paint on my wall. I had thought he’d be my support coordinator but apparently not. I don’t know who my support coordinator will be yet. Not a problem, since in general you have more day-to-day contact with your assigned staff than your support coordinator. When still outside, I heard a loud singing of “Happy Birthday!”. This turned out to come from the neighboring home though, as no-one had a birthday this day.

We were led into the living room, where a number of residents and another staff were having coffee. I initially thought there were two staff, since one of the residents talked in an almost identical voice and said almost the same things as the staff. This turned out to be echolalia though.

The residents in this home are more significantly intellectually disabled than those at my current home. Most can speak a little though. Like, one told me I had a pretty golden ring. When I told my spouse about this, I was reminded of my preference last year for a home with people with mild intellectual disability. Yeah, I replied, but I didn’t know back then what I had to give up to live with people with whom I can have a conversation.

Overall, the staff seemed much nicer than those at my current care home. For one thing, both staff introduced themselves, while back when I went to look around here last year only the staff who would be giving me the tour told me their name.

I was led to my room, which is the closest to the living room. This has disadvantages, in that I may be able to hear living room sounds more, but it has a huge advantage in that I will be able to find it much more easily than my current room. The wall is a nice baby pink according to my mother-in-law. I wasn’t able to get a real impression of my room without my furniture in it yet, but that’s not a problem.

When shown around, I did make it clear what my needs are re help with my activities of daily living and that I’m not ready to grow yet, since that will take me being stable first. The staff who was with me didn’t comment, thankfully. Overall, I feel less stressed about moving to the new home now that I’ve met my new fellow residents and staff.

I have yet to pack my clothes. Other than that, everything is in boxes now and ready to be moved. I’m ready for a new chapter in my life!

My (Second) Favorite September Memory

Posted on by Astrid

Hi everyone. I want to write, but honestly don’t feel like sharing about all the stressors of the last few days in my current care home. Instead, I decided to draw inspiration from Marsha’s 10 on the 10th post again and share one of my favorite September memories. My favorite of all time is of course my wedding date in 2011, but I’ve written tons of posts about that already I believe. So I’m going to share about my other favorite memory. This is only a favorite memory in hindsight, as it was intensely stressful back then. I refer, of course, to my moving into the care facility in Raalte on September 23, 2019.

I arrived in Raalte at around 1PM, which was a bit earlier than I’d agreed on I believe, but the staff who would be showing me round had just arrived. She showed me my room and let my spouse move my furniture into it. I remember we had some discussions about things that had to be agreed upon. My spouse clearly stated that I couldn’t manage my own meds, as I’d taken two med overdoses when living in our house. The staff had been kind enough to mark the door handles of my room and the living room with tape, so that I could recognize them by touch when wall-trailing.

I also got a short tour of the day center, that is, the group I’d be attending. I remember they had a hand-made banner with “Welcome, Astrid!” on it. The guy who came here in crisis last November also got a welcome banner, but I got nothing when I got here.

In the evening, when the other clients got home from the day center, we had dinner. After that, one of the staff said she was going for a walk with one of my fellow clients. I was tempted to ask whether I could join them, but can’t remember whether I did.

I remember feeling quite a bit in shock when first coming to this care home. I asked my spouse: “You don’t think it’s all stupid, do you?” I referred to the fact that the other residents were severely intellectually disabled. Maybe I’d also noticed the poo smell. This was one of the first things my spouse asked me about when I went to have a look around my current care home. Truthfully though, I don’t care about poo smell if I get proper care.

I Am My First Priority: Intentions for Focusing on My Quality of Life

Posted on by Astrid

Hi everyone. I paged through The Goddess Journaling Workbook again yesterday and saw the first prompt: “I am my first priority”. Okay, I did write about it already back in 2020, but I think I need to revisit it and set intentions for putting myself first. I know, we are often taught, especially in more conservative circles, that we need to put others first (or after Jesus, but ourselves last, in any case). Then some more leftist folks teach us about self-love as if it’s about essential oils and vegan smoothies. Which it could be, but this is not what I mean. Rather, self-love means being true to our own values over those imposed upon us by others. And that doesn’t need to be selfish.

Now of course I need to determine my values. I’ll narrow those down to what my major point is for being in care, ie. my main goal. This is quality of life. This may be obvious to most people who aren’t involved in the care system and it should be obvious to those who are too, but for many, the presumption of competence or the need to manage daily crisis behavior clouds their vision towards quality of life. In fact, I’ve even seen one care agency state that their aim is to “maintain and where possible promote” quality of life in their clients. Well, this is wording I’d expect to go with “independence”, not “quality of life”, since truthfully, quality of life can always be promoted.

So what does quality of life mean to me? It means that I decide what I spend my limited energy on. This doesn’t mean lazing around all day doing nothing and it doesn’t mean I won’t ever improve on my ADLs at all either. What it means is that I take the lead, focusing on my daily level of energy. I told one of my staff the other day that I would prefer if she doesn’t tell me to do something independently, but rather invites me by asking me whether I want to do it independently. In that case, she’s much more likely to get me to actually do it, as I don’t feel the pressure of her expectation, because I can say “No” if I don’t have the energy at that point.

It also means that I decide what activities to do during my allocated activity time. In my current care home, I have been sometimes not even consciously adapting to staff’s preferences for activities way more than I feel comfortable with. For instance, I’ve been taken on grocery shopping trips for the staff’s personal needs under the guise of an activity more than a few times. I eventually put a halt to that, saying I would only go if I too needed something from the supermarket. Another, even more frequent, example is my playing endless card or dice games because I’m assigned a new temp worker who comes across like they’re just here to pass the time. Yesterday, I was assigned one of those and had had it with dice and card games, so I thought, screw it, we’re making a smoothie. It turned out absolutely delicious!

It also means being intentional with my unsupported times. This means rather than mindless scrolling, doing actual reading, watching or listening online. I fully intend on blogging or at least journaling more often. If I can stop caring about my stats, maybe I can post here more often based on self-help journaling prompts. I didn’t collect those books for nothing, after all.

It means being constructive in my relations to my staff. It means being honest about my needs. For example, if a staff member (usually a new temp worker) causes me emotional flashbacks with something they do or say, rather than just telling them I feel in distress, I will hopefully be able to ask for a more trusted staff to intervene for a few minutes (which isn’t the same as demanding I be supported by all trusted staff).

Finally, I will also be constructive in contributing to my crisis signaling plan once it is revised at the new care home. My plan dates back to sometime in 2021 I believe and was immediately thrown out by my former support coordinator here because “it doesn’t work at this home”. What “works” here, however, doesn’t work for me, but that doesn’t mean my plan will be fully useable at my new care home. I will try to understand the staff’s perspective when updating the plan, but will still put myself first.

Decisions Made for Me

Posted on by Astrid

Hi all. I’m joining Denyse’s #WWandPics once again. This week, she talks about the letter D words that relate to her, among which “decisions”. I wanted to write about decisions too, but this time, about the reality of decisions being made for you. This may not happen to non-disabled adults much, but it happens to me all the time.

Like with my upcoming move. I know next to nothing about my future care home and, when I told my assigned staff that this frustrates me, she pointed out that I’ll move there anyway so how would giving me more info help?

Honestly, I wish I were given some way to have any level of input into the process. I know the reason the powers-that-be have decided to give me no choice is probably because they feel I’m too critical anyway. They believe I’m looking for the perfect home, which they and I know doesn’t exist given my rather complicated care needs.

They always tell me that I wanted to leave the care facility in Raalte, which was near-perfect compared to my current one. I did, in a way. That is, I wanted to have a discussion with the behavior specialist to explore the possibility of me finding another care home. That’s not the same. And they were the ones not being up front with me about all the things I’d lose if I wanted to live on institution grounds and have fellow clients with whom I could speak. They may’ve technically allowed me to make the decision to move here, but they gave me the bare minimum amount of information to make that decision.

Now they’re not letting me make a decision at all. It makes me feel intensely powerless and that’s a really distressing feeling. And who will be in trouble if my behavior doesn’t improve? Yup, me. Some staff have come to call me spoiled, in fact, so the burden is on me to show them I can handle whatever this new home has to offer. If I can’t, well, too bad, then I either have to learn to live with the decisions made for me or find myself another way to cope.

The Wednesday HodgePodge (August 23, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge once again. Here goes.

1. What’s your earliest memory?
My third birthday. My paternal grandma brought me a doll from Berlin and my father taught my sister and me the German word for “doll” (“Puppe”). My sister and I, of course, laughed really hard about this, as “Puppe” sounds just like the Dutch verb for “poo”. The doll, by the way, is named Roza, because my father also said Rosa (but then again, as a child I had no clue how to spell it) is a German name.

2. What’s something about you today that the old you would find surprising?
The fact that I live in an institution. Until I was about 25, living in an institution was my worst nightmare.

3. Do you like to fish? Are you a fish eater? Favorite fish (to eat)? Favorite way to prepare fish?
I’ve only been fishing once and found it intensely boring. Then again, I can’t see so that takes away what little fun I imagine there is to fishing.

I do like fish, but usually just the once with the not-too-distinct flavor. The only exception is tuna, which I love and would probably be my favorite fish to eat. When my sister turned vegetarian and showed my parents info about the unethical consequences of tuna eating, they for a while refused to buy it. I got really upset.

4. What’s your biggest first world problem?
I’m not sure whether my unsuitable care home counts as a first world problem. I guess it does, since most disabled people in developing countries don’t have a choice where they live at all. Neither do I at this point, in the sense that I know next to nothing about my future care home and am told that since I’m moving anyway it’d be pointless to give me more info. I have a post scheduled for tomorrow on this topic. In any case, I’m still fortunate in many ways I guess.

5. What one word would you use to describe your year thus far?
Chaos.

6. Insert your own random thought here.
I almost broke my record of active calories burned on my Apple Watch today. Honestly, I think relatively speaking I already broke it, since my last record dates from September of last year and I weighed 12kg more than I do now, so burned off more calories with the same physical exertion. I still need 20 exercise minutes to break my exercise record (which I set on the same day), but I won’t do that. Those 15 active calories I still need to burn for my movement record should be doable though. Today, unlike the time I set my old record, I did a variety of workouts: walking, swimming, the stationary bike and dancing.