Hello Monday (October 30, 2023)

Posted on by Astrid

Hi everyone. Oh my, I’ve once again been neglecting my blog. I honestly wouldn’t know why, since over the past few days I’ve felt pretty good. I guess I’ll blame the time of year or something. Anyway, today I’m sharing an update with you all for Hello Monday.

Saturday was a very busy day. It was mostly in a good way, but it still left me feeling overwhelmed. A staff made pancakes for lunch, which were absolutely delish. In the afternoon, I sat down with one of my staff to discuss some of the important life events I want all of my staff to know about. This was intense, as you can imagine.

In the evening, I helped another staff cook macaroni for all of the residents and staff. We started out by cooking the mince, then adding onions, garlic and peppers. We thankfully didn’t have to chop the other vegetables. I turned out to be right about the amount of macaroni we needed. Thankfully, the staff’s estimate had been higher, so we had leftovers rather than not having enough. Unfortunately, neither I nor the staff thought of freezing the leftovers, so I’m afraid they’ve gone to waste.

I had a difficult night with nightmares and interrupted sleep, but it wasn’t as bad as it could’ve been several years ago.

On Sunday, my spouse visited me. We went to Starbucks a second time and, after another caramel frappuccino and a donut for me because the pumpkin spice lattes were sold out, I had to agree that my spouse had been right all along that Starbucks is a waste of our money. I mean, the donut was worse than supermarket ones and truthfully my iced coffee was worse than the one I’d had at McDonald’s several months ago, which had initially made me decide I don’t like iced coffees. However, the problem with that one wasn’t the iced coffee itself but the paper straw. This was an issue now too, of course, but the frappuccino definitely was quite bad.

We also went to Aldi to shop for groceries. I only bought crunchy muesli, since the other things I wanted I’d asked my staff to order from the delivery service.

Sunday evening, of course, it got dark at around 5:30PM already because of the end of daylight saving time. I stayed indoors and watched some TV. We’ll have general elections on November 22, so I watched a humorous political quiz-like program in preparation for it.

Last night, I slept better, thankfully. I went on several walks today. On one of them, I decided to take some fall-themed pictures. The one below was taken a short distance from my care home.

We also visited the petting zoo once again and I took a picture of the guinea pigs.

This evening, I spent my allocated activity time claying with my one-on-one staff for the moment. We both created a flower, though hers looks more like a starfish in shape and due to the colors we used, the center is hardly visible. I usually get some help with my crafting, but this time I loved being able to craft the flower pretty much independently while my staff worked on hers.

Hello Monday (August 7, 2023)

Posted on by Astrid

Hi everyone on this first Monday of August. How are you all? Let me share about my weekend. I’m also sneaking in a bit about today, because I don’t think I can devote a separate blog post to the topic and it needs talking about anyway. I am joining in with Hello Monday.

Saturday started out pretty good. My assigned staff came to do my one-on-one for the morning. My schedule did get somewhat distorted because she came up with the idea of us clearing out my wardrobe. I didn’t mind at first, but I didn’t realize until it was too late how overloading this was.

Then eventually, after having had a shower, getting dressed and having had breakfast, I realized I’d forgotten the steroid cream I’d been prescribed for my eczema. I asked my assigned staff to help me apply it. “I’ll show you how, then you can do it yourself,” she said. Fair enough, you might say, but by this time I was well and truly overloaded. I sighed, to which my assigned staff made a comment about me being a “big girl” and that I could stomp my feet all I wanted (I didn’t). Once she got down to showing me how to apply the cream, she kind of curtly told me to relax my hand (which, well, having mild cerebral palsy, I simply can’t), then asked why I can’t. I got quite thick layers of cream on some parts of my skin and nothing on others, but in the end it didn’t matter, as the cream she’d grabbed was the oily lanette cream rather than the steroid. I do understand my staff meant well, in the sense that she’s trying to encourage independence. However, I often don’t realize how overwhelmed I am until it’s too late and at that point, any further demands will lead to me shutting or melting down.

Saturday evening was pretty good. We had home-cooked macaroni for dinner, which I loved! I actually was allowed a second helping.

On Sunday morning, my one-on-one arrived 25 minutes late, claiming it was only 15 minutes and that it just was what it was and deal with it. Then at lunchtime, she wouldn’t leave my room after I’d finished my drink (I wasn’t eating because I’d be having lunch out with my spouse), claiming she was making up for the time she’d been late in the morning. Well, it isn’t just sitting in my room that helps me. If she could’ve taken that time to help me with an activity that needed doing rather than just “chilling”, that would’ve been appreciated, but she couldn’t.

Thankfully, my spouse arrived around 1PM. We drove to Apeldoorn once again and, after a stroll around the city, decided to have lunch at Backwerk once again. I had the same old chicken barbecue baguette. Hema was closed, so we just had a drive around, then stopped by Aldi in the town next to where my institution is (I’m pretty sure those who live in the Netherlands know which town I’m referring to, if I haven’t shared it already). I wanted to get some nuts and Tuc (a kind of salty biscuit), which my dietitian allows me to snack on later in the evening. My spouse also got apricots, so I also bought those. And of course the perpetual Kinder Bueno. Then my spouse drove me back to the institution.

Once there, it turned out one of the staff had car trouble, so didn’t arrive till 4:30PM. Of course, it was my one-on-one that got cut. One of the other staff made it sound as though they were buying us French fries and a snack to make up for it, which I considered rather lame. Then after we’d finished our fries at 4:50, the staff informed me bluntly that my day schedule would be followed from there on, so I would have one-on-one again at 6PM. I felt this was ridiculous, but had no choice, as the staff were using stupid emotional reasoning to get me to agree with them.

In the evening, I did show my one-on-one how to make beads out of polymer clay.

Now on to my cheating by sharing a bit about today: this morning, my support coordinator informed me that he was going to attend the team meeting for my new care home to answer some questions about me, but that he thought I could answer those questions perfectly well myself. I agreed and went with him. Some of the questions made me feel a little uncomfortable.

The first question I got, in fact, referred to my drinking excessive water. That happened exactly once and was an impulsive act. I decided to broaden the topic and explain about my preference for how staff deal with my impulsive or self-harm tendencies, ie. by not giving more attention than needed to the behavior but to stay supportive of my emotional needs. I did forget to mention that wounds do need to be checked, something that doesn’t always happen here.

Overall, I mostly felt validated, in the sense that at least the team didn’t respond negatively to my comments. I did find it hard to walk the fine line between being too bluntly honest about my needs and delivering a sales pitch of myself. I hope I did okay though.

Hello Monday (July 24, 2023)

Posted on by Astrid

Hi everyone. I’m joining Hello Monday for a weekend recap. The weekend was a true mixed bag, but those who know how much I’ve been struggling please do read on till the end for some exciting news.

Saturday was a truly crappy day. I got a total stranger as my one-on-one for the morning. This is not unusual, but the crappiness started as soon as I voiced my discomfort with her being a total stranger. Rather than try to comfort me, she was like: “What about if I leave you alone till coffee time?” Coffee time is at 11AM and it was just past 10AM. I said no, because despite what the staff here seem to think my one-on-one isn’t a mere suggestion. Fifteen minutes later, she was like: “I haven’t had breakfast yet. I need to grab some food, see you at coffee time, okay?” I went to the communal room, where my assigned staff happened to be, who set this straight with my would-be one-on-one. After that, we played some card games, had coffee and then she quickly decided to swap places with another staff. He’s not a stranger. Not someone I get along with, but at least I know what to expect of him (which is very little, to be honest).

In the evening, there was a staff shortage until 6PM and of course I was asked to come to the communal room to unburden the staff (his literal words). Then I got a staff I barely knew once again and only could play card games once again.

Sunday was better. I did get an unfamiliar one-on-one in the morning, but at least my spouse came by for a visit. We once again drove to Apeldoorn for lunch at Backwerk and hopped into Holland and Barrett for some essential oils. My spouse got a discount card even though we rarely shop there.

In the evening, my new support coordinator – did I share my old one left the agency a few weeks ago? – was my one-on-one for an hour. We went for a walk and discussed some aspects of my care, both unaware of the E-mail landing in my inbox at 7PM. My mother-in-law had forwarded it to me. It was originally sent to her at 11AM that morning. The subject line read something like: Painting Astrid’s new room.

The E-mail started with something like: “I am [name], support coordinator for Astrid’s new care home, [home].” The person writing the E-mail then went on to tell my mother-in-law that, when moving, a client can have one wall in their room painted in a desired color, and which color would I like?

I had heard my assigned staff mention this home among the possible homes considered for me, but I had absolutely no idea I had been accepted into it. I don’t know anything about the home other than what the care agency’s website says, which isn’t to be trusted due to the fact that they make things look better than they are. However, it isn’t really like I care. Any small improvement over the care I receive here is greatly appreciated.

Today, I confirmed with my support coordinator that I am indeed moving to this home. When the move will be, is not yet known for sure, but I’ll find out about two weeks in advance and be able to take a look around a few days before the actual move.

And for those who are wondering, I chose lilac as the color for my wall.

Hello Monday (May 22, 2023)

Posted on by Astrid

Hi everyone. It’s been nearly a week since I touched the blog. Honestly, the week has been less than stellar, but the weekend was lovely. Let me share. I’m joining Hello Monday.

On Friday evening, I finally decided that, screw it, whether I’d get a staff whom I can trust to help me with my polymer clay or not, I wanted to clay. I put my clay box on the chair we don’t normally use, which did mean having to put several things that had been placed on top of the box on the floor. “Why is everything on the floor?” the staff asked me when entering my room. I replied that I wanted to create a polymer clay unicorn. “You do you,” the staff replied.

At first, she seemed rather uninterested and barely did the things I asked her up front to help me with. Eventually though, she did warm up to the idea of us working on a unicorn and she did give me feedback. The unicorn we created – and which I finished on Saturday morning with another staff – is the first one that has wings. It still needs to go in the oven and I intend to add glitter to the wings too.

On Saturday, I finished the unicorn, went for a walk and played a game of dice with a fellow resident here at the care home. Then, my spouse arrived to pick me up to drive to our house in Lobith. On the way there, we went into the carwash (€15 for a mediocre washing!) and got takeout Chinese food.

We had a relaxing evening at home. At around 10PM, my spouse suggested we go for a drive, as the car needed to be moved out of the street. After all, the town fair would be starting on Sunday and there’d be a procession going through our street. I forgot my passport, so we needed to stay in the Netherlands (Lobith is close by the German border). At one point, my spouse suggested we go to Burger King for ice cream, but it was closed. Next question: “Do we drive to Duiven to go to McDonald’s or go home to sleep?” I chose to go to McDonald’s. We each had a McFlurry. I had the Twix one with caramel sauce, which was lovely.

On Sunday, with the car out of the way, we could have a lie-in. I slept in until about 9:30AM.

Several weeks ago, I’d bought white jeans with my staff. I wore them for the first time on Sunday and at breakfast, they had coffee stains in them already. It looked rather gross (I’ll spare you my spouse’s description). For this reason, we decided to go clothes shopping yet again. We, like usual, went to Apeldoorn. I bought darker beige jeans.

We also stopped by Holland & Barrett, a wellness store, to look at nothing in particular. We left with six bottles of essential oils though. Initially, when looking at them, my spouse said: “Just tell me what you want, I’m not going to name them all, as they have everything.” I asked for clary sage. After looking for about ten minutes, my spouse at first concluded they didn’t have clary sage, then started naming some oils: “Clary sage, nutmeg, …” I said: “Clary sage, that’s the one I’m looking for!” I also got vanilla and jasmine oils. Don’t tell me these are usually either absolutes or oleoresins, not essential oils, I know. I am not sure about the quality of Holland & Barrett’s oils, but I don’t use them for any therapeutic benefits anyway. We also got a blend of roses and a blend of wildflowers just because one of my oils was one plus one free and the other was second at half price. Lastly, my spouse got rosemary.

We also obviously stopped by Backwerk to have lunch. I got a sausage roll.

In the evening, I started looking all over the Internet for blends to try with my new oils. Of course, I had had clary sage before, so only vanilla and jasmine were new, but I love all the possibilities. I created a blend in my diffuser this morning: equal amounts clary sage, vanilla, sandalwood and frankincense. This evening, I joked to my spouse that the blend made me high, because it’s so very calming. I love it though!

Hello Monday (May 8, 2023)

Posted on by Astrid

Hi everyone. My weekend was quite good, if a little hectic. I thought I’d share about it. I am linking up with Hello Monday.

On Saturday, I had a temp worker who was here for the first time as my one-on-one staff for most of the morning shift. Thankfully, I got along with him okay. This did mean I didn’t feel comfortable going on a walk, let alone working with clay or other crafty things. I did play a game of Yahtzee with a fellow resident in the morning. My weighted blanket was also finally put in the washing machine. I was a little worried that putting it in the dryer would damage it, but the staff told me he knew what he was doing. Thankfully, once I got back from Lobith on Sunday, I found out it was still intact.

In the afternoon, I got a new temp worker once again, but thankfully my spouse was here almost as soon as the evening shift started, so I didn’t have to deal with the temp worker long. We drove to my spouse’s and my house in Lobith, picking up groceries and Domino’s pizza along the way. I had the hot and spicy pizza with pepperoni, bell peppers, onions and jalapeños.

Because I hadn’t been walking all day on Saturday, I decided to do some dancing in the evening. Otherwise, I wouldn’t have reached my movement goal on my Apple Watch and I didn’t want to cheat by lowering it yet again (and I certainly didn’t want to break my 250-odd day streak).

On Sunday, we visited my in-laws for a bit. My mother-in-law and I went for a 40-minute walk through the village. In the evening, when I once again had a temp worker, but thankfully a somewhat familiar one, I went for two more 40-minute walks. Then, because I could, I danced some more. I finally doubled my movement goal on my Apple Watch for the first time in half a year.

Yesterday evening, I had a bit of an issue with my sister. I invited her to my birthday at the end of June, thinking that if I invited her now she would have plenty of time to make sure she actually could make it on one of the days my spouse and I are available. She got upset, because her and my youngest niece’s birthdays are first (this Saturday and on the 19th, respectively). She tried to ask me whether we would come over for her birthday too, which on the surface seems reasonable. However, being that she has both this weekend and the weekend after that planned pretty full with other family and, besides, we don’t do last-minute planning for trips that are this long (my sister and her family live over two hours away), I decided against it. According to my sister, the way it “works” in our family is everyone knows when our birthdays are and is welcome to come by, so it wasn’t like she should have invited me. Being the people pleaser that I am, I actually almost let her persuade me to allow her to ask her in-laws, whom I barely know, to pick me up when they would be visiting them on the 18th. Thankfully, my spouse intervened and told me that would be really unwise, since what if I have a meltdown either on the trip or when with my sister’s family? Finally, thankfully, it turned out she wasn’t really expecting us, but was just upset that I’d mentioned my birthday this close to hers. I can see her point.

Yesterday, as a side note, was my partner’s and my fifteenth anniversary of being a couple. I really feel pleased that we decided to “call it a relationship”back on May 7, 2008. We’ve overcome quite a few hurdles in those fifteen years, but I’m so happy that we’re stronger than ever together!

Hello Monday (April 3, 2023)

Posted on by Astrid

Hello everyone. I’m joining Hello Monday again this evening. Let me share about my weekend.

On Saturday, my assigned staff supported me for part of the morning. We made a melt and pour soap in the shape of a heart. Sadly, I don’t have a picture and I gave it to my husband. I added gold-colored mica powder to the soap and lavender and ylang ylang essential oils.

I also created an essential oil blend for in my diffuser. I used pink grapefruit, bergamot and ylang ylang essential oils in this blend.

I did ask my assigned staff to inquire about my orthopedic shoes. This has been an issue for at least two years: I started out with supportive insoles, then an ankle foot orthosis either with or without semi-orthopedic shoes and finally now orthopedic shoes, but they still don’t fit. The shoemaker is frustrated, wondering when they’ll finally be good enough. Well, when they fit. Honestly, I am skeptical about the method they used to create an image of my feet: not using putty for a “mold” but using an iPad to create digital images, a method they’d used on a client of my care agency for the first time. My guess is this method requires some level of understanding I don’t possess but am assumed to possess based on my expressive language. Anyway, I don’t care how much of a bother I am, but I’m not accepting the reality as it is now, ie. my needing to buy new regular shoes every two months due to them being damaged from the way I walk. If they can’t fit me for orthopedic shoes, they’ve got to find a way to fix my shoe issue some other way.

Saturday was a good day overall. I was supported by two staff – my assigned staff and another – I get along with very well during the morning shift and my day schedule wasn’t disrupted. For the evening shift, three out of four staff were staff I don’t really get along with and I ended up being supported by two of them. I didn’t mind though, as my day schedule wasn’t disrupted and I did get to do some activities I enjoy.

On Sunday, my husband came by for a visit and we drove to Apeldoorn to have lunch at Backwerk once again. I had a tuna baguette. Then we went into several shops, because I wanted to buy some new spring/summer clothes. Sorry, no pictures once again. I bought a blue, flowery skirt and three simple tops in black, white and blue.

Sunday evening was a bit hard. It started out well with the staff explaining to me who would be supporting me throughout the shift. This was repeated several times. Then, at 6PM, unexpectedly a staff who wasn’t supposed to come and whom I don’t get along with, showed up. I had a meltdown and eventually, after a bit of an explanation from the other staff and trying an activity for a few minutes, I chose alone time over time with him.

I also spent my weekend working on the #AtoZChallenge, of course. I don’t generally prepare my posts in advance, so I have lots of work to do on the day itself. I also discovered Reddit last week. That is, I had an account back in like 2008, but they changed things up a lot so that’s no longer valid. I love browsing Reddit now and commenting where I can. I haven’t created a post yet.

Overall, my weekend was mostly good with some negativity due to the unexpected staff change. For those not aware, I am autistic, so it isn’t just that I don’t get along with some staff, but if they’d told me in advance, I could have been prepared.

Hello Monday (March 6, 2023)

Posted on by Astrid

Hi everyone. A few weeks ago, I discovered another great weekly linky called Hello Monday, in which bloggers share about their weekend. Since I didn’t join #WeekendCoffeeShare this past Saturday, I still have a lot to share about the weekend. Besides, Sunday afternoon was fun, so even if I had posted on Saturday, I could post again today. Let’s get started.

Saturday morning was kind of hard. A new staff was being introduced to me, so for the morning shift there were two staff people doing my one-on-one. I do appreciate the fact that they actually had him properly introduced to me rather than having me do all the explaining, like they did with the student staff, but it did lead to me overhearing them converse about stuff that they said wasn’t my business. Well, if it’s none of my business then why discuss it in my room with me sitting right there in the middle?

Saturday evening was slightly better, but Sunday morning was hard again. The staff assigned to be my one-on-one that day always complains of a sore arm when holding my arm to guide me when walking, but I can’t safely walk without a sighted guide and I struggle to hold onto someone’s arm too (which is the proper way of walking sighted guide). In this sense, I empathize with this staff. Being that he isn’t the crafty type either, we were quite limited in the activities we could do, so I eventually decided we’d go for a walk anyway.

After he left at just past eleven for my “time to rest” (his cringe-worthy term for time without one-on-one support), which normally doesn’t start until 11:30, I indeed had a little lie down, but had had it by 11:30 and decided to go into the living room to see the other clients and staff. I sat there while they had lunch (and I had a little bit too). I was going to have a visit from my husband at 1PM and we usually go out for lunch then. One of the staff directed us to clear up the table, while she herself remained seated. Granted, she was another client’s one-on-one and either that client can’t or won’t clear up. I can’t without someone assisting me either and my one-on-one was nowhere to be found, but thankfully another staff helped me.

When my husband came to pick me up, he drove randomly. At one point, he asked me where we were going. “Where are we?” I asked. He replied we were at highway A50, headed northward, in the middle of nowhere. Zwolle was the closest bigger city, so we decided to head there. We went to Ikea, where we looked around a little, tthen had fries with chicken (for me) and meatballs (for him). Then we saw these really cute soft toys. My husband pointed out an orangutan, which I immediately decided to buy. My husband wants me to name him after the monkey king in The Jungle Book and he wanted me to look up the song on our way back to the institution. Not that I remember that movie. I mean, I’ve probably seen parts of it, but we only had public television at home when I was a child. I think the monkey is called Louis.