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!

Sounds of the Intensive Support Home

Posted on by Astrid

Hi everyone. This week, one of Mama Kat’s writing prompts is to listen to the sounds in your house for five or ten minutes and let them inspire a blog post. I honestly don’t need to do this right now – I have my AirPods in my ears and their noise canceling is pretty good. Instead, since most sounds here are the same most days, I’ll write about the sounds I usually hear.

There’s this fan in my room. I have no idea what it does, but when they test the smoke alarm or when the smoke alarm goes off for another reason, it makes a deafening noise. Even when the smoke alarm doesn’t go off, the noise is a constant hum. When I came to look around here to see if I might want to live here, I thought I’d get used to it and, indeed, this is the least annoying of the daily noises, because it’s constant and monotonous.

Today, like most days, the resident who has his room next to mine was screaming and kicking his door non-stop for most of the day too. This is an intensely triggering sound, even though when the resident is this irritable he usually gets locked into his room. In fact, it triggers me, not just because I’m scared of his aggression, but also because I feel pity for him being locked into his room.

Then when I’m really lucky (not!), the resident two doors away from him has an outburst too and is being locked into her room as well. I am lucky (although truthfully I shouldn’t have to say that) that the threat of locking me up has only been used once. And I am really thankful the behavior specialist hasn’t approved locking me up or that threat might’ve been followed through on.

Then, if my window is open, or sometimes even when it’s not, I can usually hear the music the resident two doors from me on the other side listens to. He has been listening to St. Nicholas music lately, even though that celebration isn’t until December 5.

Then there are the various hallway noises. Sometimes I can hear another resident laughing or grumbling. At other times, I hear the staff fooling around. I can also hear one resident’s pet parakeet if it’s really quiet otherwise. That is a sound I cherish.

As you can tell, I mostly don’t like the sounds I hear here. Then again, I don’t like most of the things about the intensive support care home (my current care home). I hope at least some things will be better once I move to my new home this coming Monday.

Mama’s Losin’ It

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.

Memories of My Paternal Grandfather

Posted on by Astrid

Hi everyone. Today is National Grandparents’ Day in the United States. I heard of this a few days ago when looking for inspiration for my blog, but didn’t feel like writing about the topic at the time. Now, the subject returns in Marsha’s 10 on the 10th post. This is a meme in which Marsha asks ten questions related to a particular topic of the month. Rather than answer all ten, I’m going with one of them, which is to share a favorite memory involving your grandparent(s).

I have shared about my paternal grandmother a lot of times already. She was certainly my favorite grandparent. Today though, I’m going to share about my paternal grandfather.

My paternal grandparents divorced in 1973, years before I was born. They didn’t have much contact since, as all of their children were adults by that time. In fact, I can’t remember a birthday or holiday when they visited my family on the same day.

My paternal grandfather was a radio technician during his working life. He knew a lot about all sorts of science and tech things. Indeed, my parents tell me I acquired my first spoken word from him. As the story goes, my father and grandfather were discussing aviation and, at one point, either of them mentioned the word “aircraft industry”. I, then ten-months-old (seven months corrected for prematurity), parroted: “Aircraft industry.” This, my parents see as a sign of my being a genius. Most of my psychologists in my adult life have seen it as one of the early signs of autism.

My paternal grandfather was probably on the spectrum himself too (as is my father, though he doesn’t care about diagnoses). We had these traditions built into his visits with us. One of them was him always giving my sister and me ƒ5 each. At one point, when my father had probably decided we were too old for this, our grandfather put the coins in a very hard to open money-box with transparant sides, so that we could see our money but not reach it. I am pretty sure I had a tantrum over it.

My grandpa had a small motorized boat. Well, large enough to sleep in. My sister once went on a week-long sleepover on the boat with him. Mid-way through it, my parents and I visited them and we sailed IJsselmeer a bit. I was both scared and excited, as we could leave the boat when it was anchored and have a swim around.

I went to grammar school, the type of high-level high school I attended, in 1999. My grandfather had attended grammar school back in the 1930s, so he gave me some kind of a button with “grammar school 1” written on it.

By that time, age 75, my grandfather started thinking he was suffering from dementia. My father brushed it off, saying he probably thinks he has dementia when he doesn’t remember the most difficult of the Latin words he learned in grammar school. As it turned out, my grandpa was right after all, as he was diagnosed with pretty advanced dementia in late 2001, age 77. At this point, he needed to be placed in a nursing home. He died not even eighteen months later. Now that I know more about dementia, I know that the stage of not recognizing people and having no short-term memory whatsoever, is by far not the first stage of dementia. I realize now too that my paternal grandmother probably suffered from mid-stage dementia too, but died of another cause before entering the phase at which point my grandfather was diagnosed. It is truly tragic that my grandfather wasn’t taken seriously.

Gratitude List (September 8, 2023) #TToT

Posted on by Astrid

Hi everyone. It was a rather eventful week. Time for me to focus on the positives in a gratitude post. I’m joining Ten Things of Thankful, which is back after a hiatus over the summer. Here are my thankfuls.

1. I am grateful I have a moving date! This obviously tops my list. Like I mentioned on Wednesday, I’ll be moving to the new care home on the 18th.

2. I am grateful my mother-in-law is taking time off from her volunteer job to come to the visit to look at my room and have a coffee at the new care home on the 15th. Hers may be a volunteer job, but it’s responsible work, as she works for an animal rescue shelter and they’re required to maintain 24/7 availability.

3. I am grateful for quality time spent chatting and playing dice games with a fellow resident. Today, she won, which was good, as I had spilled the beans about my leaving this home a little earlier than I’d originally planned and she was quite upset. For the record, I didn’t let her win.

4. I am grateful for the nice card this resident gave me, even though I told her I wouldn’t be leaving today.

5. I am grateful for sunny and warm (well, hot) weather. It’s a little too hot for my liking, but I love the fact that I can wear my summer clothes a little longer than usual.

6. I am grateful my Braille display and computer both behave. Both gave me a scare this week. I bought new headphones on Sunday. Not because I needed them but because they’re fluffy and pink. Then when I plugged them into my computer, somehow my PC decided to install TikTok. This was a coincidence, as a 3.5mm audio cable can’t transfer data like that. However, I had no clue so started messing with my computer like crazy, uninstalling everything I didn’t recognize. This thankfully didn’t cause any long-term problems, but for a while I thought my Braille display wasn’t working so I must’ve somehow uninstalled its driver (even though I recognize that manufacturer). In the end, rebooting my Braille display solved the problem.

7. I am grateful for a delicious blueberry smoothie I made on Monday with a temp worker. I used frozen blueberries, yoghurt, vanilla extract, cinnamon and sweetener. It was absolutely amazing!

8. I am grateful for some long walks when it still wasn’t too hot outside.

9. I am grateful for a great essential oil blend in my diffuser. Yesterday, a fellow resident was out of control a lot and it was causing me anxiety. I eventually decided to ask the staff to help me create a blend so that I could calm down. I put patchouli, white fir and lavender essential oils in the diffuser.

10. I am grateful for the will to write. I may not always know what to write about, but at least I want to write. I currently have a seven-day writing streak going (although I still need to write today, which will make it eight days) in Day One, which is rather cool. Sometimes, all I write is a quick gratitude list (which I drew inspiration from for this post) or a “My Day” template post, but that’s okay too.

What are you grateful for?

The Wednesday HodgePodge (September 6, 2023)

Posted on by Astrid

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

1. It’s National Read A Book Day…whatcha’ reading? What’s a book you want to read?
Honestly, I’m not currently reading any book. That is, I’m paging through a few, among them a positive body image workbook and Find Your Path by Carrie Underwood. And of course a ton of journaling books. I can’t remember the last book I actually read. I thought I wanted to read Cathy Glass’ latest foster care memoir, only to find out it’s her penultimate book. That’s truly sad, as I love the author. It immediately caused me so much disappointment I don’t think I want to read this book after all.

2. Which is better…having high expectations or low expectations? Explain why.
I am probably in the minority here, but I think having low expectations is better. Still better yet is having no expectations at all, but to let things unfold as they will. I grew up with parents who put a lot of pressure on me under the guise of high expectations and this – among many other things – led to some emotional scars. I also feel that, if we have high expectations of others in life in general – so people other than those lower on the social ladder than us (like children) -, we often come across as demanding and critical.

3. Serenity is ________________________.
A feeling of calm and being in the present.

4. What’s the most interesting thing in your purse or pocket right now?
Uhm, I don’t have a purse and rarely have anything in my pockets.

5. What helps you calm down?
Ideally, lying under my weighted blanket with my stuffed lemur’s tail over me, my essential oil diffuser on and a calming Spotify playlist like this one playing on my music pillow. Or just lying under my weighted blanket, if my phone needs charging and I don’t have any essential oil blend in my diffuser at the moment.

6. Insert your own random thought here.
I have some awesome news: I have a moving date!!! On September 18, I will be moving to the new care home. I still know next to nothing about it, but I’ll follow my advice on question #2 and just let things unfold as they will.

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.

#WeekendCoffeeShare (September 2, 2023)

Posted on by Astrid

Hi everyone on this first Saturday of September. I’m joining #WeekendCoffeeShare, even though it’s waaay too late for me to have coffee. That is, I don’t usually feel the energizing effects that strongly, but I am sure the staff won’t let me have a cup of coffee anymore. Or anything to drink except for water, truthfully. So let’s have a glass of water and let’s catch up.

If we were having coffee (or a glass of water, but I always start my paragraphs like this and even my saying that is a cliché), first I’d share about the weather. We’ve had rain, clouds, some sunshine and daytime temperatures usually around 20°C. Today, the daytime high was 23°C and next week, we might even get temperatures as high as 28°C.

If we were having coffee, next I’d tell you about my movement. I haven’t been exercising as much this past week as I did last week and today I saw in my trends in the fitness app that my exercise has decreased. Of course it has, you’d say, if I haven’t been exercising as much this week as last week, but the trends compare the past 90 days to the past 365 days. I try not to care, even though I did sign up for a month-long challenge in the Challenges app for September.

Yesterday, when on a walk with my assigned staff, we compared data, since she also has an Apple Watch. I’m glad my cardio fitness level wasn’t much lower than hers. I mean, I would’ve felt bad for her if both of ours were low, but mine is in the below-average range.

If we were having coffee, I’d tell you that, on Thursday, my assigned staff and I went out to have lunch together. She’s off on vacation for the rest of September and I’ll (most likely) move this month, so we won’t see each other again. We both had a large salad, mine one with chicken, of course. We both also had a heavenly caramel coffee.

Today, I decided to gift my assigned staff the blue polymer clay unicorn with Hotfix rhinestones on it. I remember creating my very first unicorn here at the institution with her. I originally hadn’t intended on giving my polymer clay creations away, like I had done when moving out of the care home in Raalte, but then again if I take them with me to the new care home they will probably break during transport. I’ve seen a little too many staff come and go here to have a piece for everyone, but I have something for the ones I see most often.

If we were having coffee, I’d share that I’ve been collecting books of journaling prompts once again. Amazon.nl now allows customers to pay for Kindle books with their bank account, for which I’m extremely grateful. Until last Monday, you could only pay for digital products with a credit card, which I don’t have, so I only downloaded free Kindle books. Now you still need a credit card for other digital products, but eBooks are an exception. And, of course, the first book I bought was a collection of journaling prompts. I also bought a collection of essential oil diffuser recipes. Each book cost under €3. I do need to make sure I won’t spend my money compulsively, as a search for “journaling prompts” in the Kindle store returns over 3,000 books. Then again, a lot are free at one point. For this reason, I acquired three new books of journaling prompts over the past few days, only one of which I paid for.

Lastly, if we were having coffee, I’d ask you all to cheer on my oldest niece as she starts school on Monday. She will be four on the 10th. I need to pop into the toy store tomorrow to buy her a present, as ordering something online won’t get it here on time for me to send it on to her.

How have you been?

August 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month, so it’s time for my monthly reflections. Overall, August was slightly better than July, but it’s still been quite a tough month. Honestly, it’s been quite a tough year so far.

My spouse’s car broke down a few weeks ago, so we weren’t able to see each other each week this past month. Last Sunday, though my spouse did visit me, it was in my mother-in-law’s car. Thankfully, the car has been fixed for now.

My mother-in-law also only visited me once this past month despite there being five Tuesdays in August and her normally visiting me every other Tuesday. On the 1st, she had to work and on the 29th, a new horse was delivered. The story behind her having gotten a new horse is a bit sad, in that one of her horses, Remco, passed away suddenly last month. I mean, he was already crippled, so could only step around a bit, but still his death was unexpected. The new horse is a young mare called Marrit.

Now on to my own life. It’s been boring. I’ve been mostly waiting to find out more about the move. Last Sunday, my support coordinator told me that I’ll move within six weeks, probably sooner. I honestly have mixed feelings about the whole thing. Obviously, I try to remind myself it can’t be worse than here, but what if it isn’t any better either? Will I be expected to magically flourish there just because it’s not this home? I’m hoping, of course, that I will eventually flourish, but this isn’t going to happen magically. Indeed, this requires work, both on my part and on the part of the staff.

I also, like I mentioned yesterday, have had an increase in flashbacks to my childhood trauma. Of course, I could hope this will lessen when (if?) I’m in a calmer environment, but still I’m pretty sure they won’t disappear without support.

In the health department, I’m doing pretty well. I had a meeting with the dietitian yesterday and she asked me not to lose any more weight. I’m not sure how to do this, truthfully, as I’m eating well overall. There’s also this thought at the back of my mind telling me that I could still lose 10kg and be at a healthy BMI. Besides, I still have quite a lot of abdominal fat and watched some YouTube videos a while back that mentioned the dangers of internal obesity. Then again, the dietitian told me there’s very little I can do about this. The YouTube videos tell me otherwise, but then again my healthy voice is telling me (or at least I’m assuming it’s my healthy voice) that following those YouTubers will just lead to extreme restricting, which will probably just cause me to relapse into bulimia. I’m still struggling intensely with all the things diet culture tells me about what to eat and not to eat to preserve my health and, at the same time, my dietitian has one foot right inside diet culture as well. After all, my food plan was a classic weight loss plan up until I reached a healthy BMI. Heck, the very fact that I mention the BMI here shows how much I’m into diet culture. I want to unlearn this, but I’m not sure how.

With respect to other health factors, I’m doing okay. I walk more than I did in July, have been swimming again and went on the stationary bike occasionally. That being said, I do worry about a decline in my mobility. This could be the YouTube videos again, which told me a loss of arm swing could be a sign of overall decline. I have absolutely no idea whether my arm ever swung at all though. That being said, my drop foot seems to be getting worse too.

I did finally get the eczema on my legs treated. I also got a slight infection on the skin of my earlobes, where I had my ears pierced in early July. I’m currently on a course of an antibiotic ointment, so hoping that’ll work.

In the crafty department, I haven’t been very active. I did create a lot of unicorns out of polymer clay, but they were all done using cutters, not sculpted. I intend to paint them and use them as gifts for my fellow residents when leaving this home.

I’m linking up with What’s Been On Your Calendar? (#WBOYC).