#WeekendCoffeeShare (March 25, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s past 9PM on the night before daylight saving time sets in, so no coffee for me. I just had an apple-and-cherry flavored Dubbelfrisss with my meds and a small bag of chips. I normally have those at 8PM on Saturdays, but was upset then. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d complain about the weather. Oh wait, how’s yours? Ours has been rainy and chilly for spring. I want sunshine!

If we were having coffee, I’d share that I’ve been struggling a lot over the past week. I was in a crisis on several occasions. I will spare you all the details but I’m not proud of my behavior. The triggers to my severe outbursts involved disruptions to my day schedule and unfamiliar temp workers being placed with me for my one-on-one support. However, I must admit I’ve been on edge almost all the time even when there were few disruptions to my day schedule. For example, today I got upset because my laundry was put through the washing and drying process twice and this means I haven’t been able to change into my pajamas yet, something I normally do around evening med time at 8PM. In this sense, I understand my assigned staff’s saying yesterday that even if there are no disruptions to my day schedule and I’m supported by super familiar staff all day, I still may get upset. Which, by the way, wasn’t the case today, but we got as close as possible: a familiar staff supported me for half the morning shift and from handover at 3:15PM up till dinnertime at 5PM. For which, by the way, I explicitly thanked said staff. I’m pretty sure I’ll hear that because I got upset at 8PM for a minor reason, by which time a relatively new staff was supporting me, apparently familiarity of staff isn’t the issue. And indeed, there is probably nothing that will prevent me from getting upset altogether, but that doesn’t mean that nothing can be done to prevent the most severe of crises.

If we were having coffee, I would tell you that I finally saw the dietitian on Wednesday. She’s the same dietitian I saw in my old care home. I had a good talk with her and the absolute best news is I no longer need to lose weight! Not that this ever was the goal to begin with, but I was obese when I started my healthier lifestyle journey with her in January of 2022. Now I’m at a healthy BMI. The dietitian made some recommendations for me to change my diet to get me from losing weight to weight maintenance. She’s also trying to talk my staff into getting me to choose my dinners from the meal service menu again, but I haven’t heard about that so either my assigned staff said no or that’s still up for debate. The reason the dietitian is trying to get me to choose from the menu is the fact that I’m quite a picky eater and, when I don’t like something, I’ll usually skip it and not be sure how to replace it. My eating disorder voice also often chimes in, saying that the fewer calories I eat at dinner the better.

If we were having coffee, lastly I’d tell you I upped my movement goal on my Apple Watch from 300 to 330 calories per day. It’s a bit of a challenge to reach it, particularly now that the weather hasn’t permitted long walks most days. I did go on the stationary bike once (and planned on going onto it several more times but you know how it works with motivation to exercise). I did surpass my goal each day though.

The Wednesday HodgePodge (March 22, 2023)

Posted on by Astrid

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

1. Did you celebrate St. Patrick’s Day in some way? If so tell us how. Are you a fan of corned beef? Cabbage? The color green?
No, I didn’t celebrate St. Patrick’s Day. I am not a big fan of cabbage or corned beef, but it’s not like I hate them either. I do love the color green.

2. March 22nd is National Goof Off Day…will you celebrate? Your favorite way to goof off? Last time you had a whole day to spend “goofing off”?
I don’t work and can officially choose my own activities within my day schedule, although a lot of staff will suggest them for me. In this sense, I can “goof off” as much as I like, although it doesn’t often feel like it. My favorite ways to “goof off” would be reading, watching YouTube videos and chilling out with an essential oil diffuser on. By the way, crafting is also a favorite way to spend my time, but since I need support with that, I often don’t feel as playful about it as the expression “goofing off” reminds me of.

3. Something on your to-do list that has been there more than a month? Will this be the month you finally cross it off?
I don’t have a to-do list, honestly.

4. In your opinion, what emotion is the most beneficial? Which one is the least useful?
The most beneficial emotion, to me, is joy. Okay, yes, I copied that from Joyce but I completely agree. I had it as my word of the year last year. The least useful emotion, to me, is bitterness.

5. What was your favorite thing to do as a kid? Elaborate.
Many different things. I enjoyed playing with PlayMobil® until I was at least thirteen. I also loved sitting on the swings in my garden. However, I was also quite nerdy, enjoying geography and drawing maps by hand (obviously not detailed at all due to my severe visual impairment and my poor spatial awareness). My favorite map to draw was that of Italy.

6. Insert your own random thought here.
Just a thought: for those of you who don’t need care, can you imagine what it’d feel like if, each day, five or so different support people, often random strangers, showed up in your home claiming to want to do an activity with you? How about if they felt entitled to ask you personal questions to “get to know you” without disclosing much about themselves (after all, they’re “professionals”). What if, after six months, you’d seen literally over a hundred of them, if not several hundreds? How would it make you feel? I just asked a staff, who is a temp worker here but has supported me about ten times now so I’m supposed to “know” him, this question, after I got very irritated with another temp worker (who’s supported me about five times). The more familiar temp worker seriously replied that he wouldn’t mind who got into his home as long as they’d do the activity with him. I guess this means needing care is too far out of his realm of experience to understand the question.

#WeekendCoffeeShare (March 18, 2023)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s nearly 9:30PM as I start writing this post, so I’ve long had my last coffee for the day. I’m afraid I only have water now. However, as this is a virtual coffee share, you can all grab your own beverages of choice. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d ask about your weather, like I normally do. Ours has been mixed, but usually pretty good. Yesterday and today, the temperature even climbed to 16°C.

If we were having coffee, I would say that yet again I haven’t been as physically active as I’d have liked this past week. However, either my sister doesn’t usually wear her Apple Watch or she isn’t as active either, as we’re “friends” on the Fitness app now and I’m more active than she is according to it.

Yesterday, the support coordinator did take me and two other clients on an hour-long walk, partly through uneven terrain. It was good.

If we were having coffee, I’d tell you I’m still struggling quite a bit. Like I wrote yesterday, we finally had the meeting on my care. It was mostly validating, but the bottom line is nothing will change in the short term.

If we were having coffee, I’d tell you that, because of this distressing situation, I’ve been in crisis quite a few times lately. I self-harmed a few times and today, I actually eloped from the care home and wandered around institution grounds for over an hour before the staff found me. I know this isn’t going to help my chances of going to a less behavior-oriented home, but I really can’t keep myself from spiraling out of control like this.

If we were having coffee, I’d share that I bought another pair of headphones for like €330 and it turned out I don’t like them. I’d been wanting to buy them forever, but they don’t fit comfortably (are too large) and the noise canceling function isn’t as great as the reviewers say it is. It’s going to be returned.

If we were having coffee, I’d end on a positive note by saying today the support coordinator took me for a walk to the coffee bar (I know you English-speaking folks call it a “coffee shop” but I just can’t bring myself to use that phrase) here in town this afternoon. I had a black coffee and a piece of honey-walnut cake. It was delicious!

Finally, the Meeting on My Care

Posted on by Astrid

Hi everyone. How is your Friday going? Mine’s okay. Guess what? The meeting between me, my assigned staff, my mother-in-law and the behavior specialist finally happened today. Let me share.

The behavior specialist opened the meeting by saying we needed to discuss how I’m doing now and how things have gone since our agreements at the last meeting. To both, I could give relatively short answers: I’m doing crappy and the agreements led nowhere. Then, my mother-in-law helped me word my wishes for the meeting: to discuss my wish to get insight into my care plan, including allocated extra care hours (what I call “one-on-one” here), and to discuss my wish to start the process of finding a more suitable home. The behavior specialist is going to ask my support coordinator to get me insight into the care plan.

I did go into detail about why I want insight, namely the fact that I keep being told I ask for more than I get funding for. The behavior specialist told me she had heard that indeed the home provide more extra care than they get funding for. Whether this refers only to my one-on-one or to the thirteen hours a day total that there’s an extra staff member, I couldn’t get clear. I was quite worried in the former case, because I really can’t cope with less one-on-one than I get now.

My assigned staff confirmed that indeed sometimes – quite regularly in fact – my one-on-one that I’m supposed to get according to my day schedule is cut short due to for instance another client acting out. She explained that my staff is the first to come to their coworkers’ rescue. This is somewhat understandable, because the other extra care client at least on the surface appears to need her one-on-one more and it isn’t like staff should be beeping for other homes’ staff to come to their rescue when there’s one available right in my room. However, I do suffer significantly from this. Yesterday, due to this situation, I self-harmed twice.

The things I said could improve my care here, according to my staff, weren’t realistic. This is understandable, among other things due to the fact that I am usually supported by temp workers. We might be able to tweak my day schedule and the list of support agreements a little bit though.

Then we got to discuss what type of home I’m looking for being moved to in the long term. My assigned staff is pretty certain that I shouldn’t be placed in another intensive support home, but the behavior specialist didn’t seem so sure. She pointed out that some staff at my old care facility had struggled to support me. She also made it clear that there’s this rigid divide between support and care, where you either need behavioral support or you need a care-based approach. Something inbetween doesn’t seem to exist.

The behavior specialist asked me whether I’d mind having to live in a smaller space, like just one room, not a separate living room and bedroom. I told her I had that at my old care home and considered that room pretty spacious. I know most rooms at care-based homes here on institution grounds are smaller than what I had there, some actually with shared bathrooms. I don’t even mind that, although I’d need a staff to make sure it’s clean when I need to use it.

We also discussed my preference for staying with this care agency, but if this agency doesn’t have a suitable home, I don’t mind moving to another either. I said, and my husband confirmed this when I texted him about it, that it’d be ideal if a new home wouldn’t be too far from where he lives but that isn’t a top priority.

Overall, the meeting went quite well. At least, my assigned staff understood my point of view and the behavior specialist is willing to start the process of finding me a more suitable home. She also admitted she hadn’t realized when placing me here that it’d be as chaotic as it is here.

Thankfully, my assigned staff isn’t going to give up on me. I specifically asked about this, because several staff have been saying things along the lines of: “Why should we even try our best to make things better if you want to leave anyway?” I understand big changes aren’t going to happen if I’m leaving anyway, but then again they aren’t happening if I’m not leaving either. Tiny things that will make my life easier, can still be done though.

I’m Participating in the #AtoZChallenge Again This Year!

Posted on by Astrid

Okay, with my blogging not having been all that successful over the past several months, maybe this is really a stupid idea, but I’m wanting to participate in the #AtoZChallenge again. For those who don’t know, this is a challenge in April in which bloggers write 26 posts during the month, each based on one letter of the alphabet.

The theme reveal event opened last Sunday, so I’m writing to let you know what I think will be my theme for the challenge. I will, like last year and the year before, choose a broad theme that I might decide to narrow down during the challenge. My theme for this year is disability. I’m probably mostly going to focus on developmental disabilities, including but not limited to autism. I did the challenge on autism specifically once on my old blog. While that was a success, I want to have the option of writing on broader topics. I may also want to write about long-term care as it relates to disability. I was for a moment considering “life in long-term care” as my theme, but I can’t think of enough topics to write on relating to that.

Most of my posts will fall under the “Awareness” category, while some may be more suited to the “Advocacy” category. I will attempt to keep my posts relatively accessible. Hope you’ll follow along.

Six of the Most Important Objects I Own

Posted on by Astrid

Hi everyone. I’m feeling like writing, but am a little lost for words, so I looked through my various collections of journaling prompts. One of them was to list some of the most important objects in your life and to share how you got them. Here goes.

1. My iPhone. I first got an iPhone in the summer of 2017. Back then, I was clueless as to whether I would be able to do much with it. However, it turned out I only needed six out of the ten allocated lessons from the blindness agency computer trainer. I have had my current iPhone, an SE 2nd generation, since June of 2020 and am pretty sure I’m going to try to keep it functioning until the 15 series comes out in the fall, because the regular 14 isn’t really an improvement over the 13 and the 14 Pro is too expensive.

2. My Apple Watch. I got my Apple Watch Series 7 at the end of August, barely a month before the Series 8 was released. I don’t really do many techy things with it. Like, I don’t use it to make phone calls or check my mail, but I really love its fitness-related features.

3. My computer. Oh my, I’m really mostly listing modern technologies here. As those who’ve read my blog recently, will know, I got my current computer a few weeks ago. I mostly use it for browsing the Internet, blogging, reading Kindle books and it’s a little easier than my iPhone for YouTube too. Other things, such as mail, reading other books, writing in my journal, etc., I do on my iPhone. Then again, I’m so happy to still have both.

4. My music pillow. Okay, it’s somewhat of a piece of technology too, but not as advanced as a computer or smartphone. A music pillow, for those who don’t know, is a regular pillow with a small speaker integrated in it and in this case a cable that you can connect to a music player or in my case my iPhone. I listen to music on my music pillow almost every night as I fall asleep.

5. My box of essential oils. Oh wait, since I own 33 different essential oils, do each of these count as separate objects? Oh well, I say they don’t. I wrote a stream-of-consciousness post on the box several years ago (although I’m not sure I had the exact same box then). I could’ve chosen my diffuser, but without oils, it would be useless. I love to create blends of essential oils for in my diffuser, but I also love to add essential oils to soap and homemade bath and body care products.

6. My soft toy of the moment. The one I sleep with, changes often, but the lemur is still popular. Since the orangutan is my latest addition, it’s currently among my favorites.

I now, as I finish this post, realize I’ve been rather materialistic. I mean, I could have mentioned my wedding ring or the framed picture on my wall that I got from the staff and clients at my old care home. I’m not saying these don’t have value to me. Like, I wear my wedding ring day and night. However, the way I subconsciously at least interpreted the question, was “important” as meaning “useful”. They’re not the same, of course.

What are some of the most important objects in your life?

#WeekendCoffeeShare (March 11, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. I’m very early by my standards, having just had my afternoon coffee. I probably won’t finish this post till early evening though, since it’s nearly 3PM and I’m allowed another activity hour at 3:30. The coffee maker broke down last week. Then we got a new one yesterday – a really fancy one that can work with beans -, but it broke down today. Thankfully, the Senseo coffee maker still works. Let’s have a drink and let’s catch up.

If we were having coffee, I’d first ask about your weather. We got snow this week. Like actual snow that remained on the ground. Yesterday was cold and snowy and icy. The rest of the week was mostly cloudy with some rain. Today is okay. We even got a little sunshine and the temperature climbed to 7°C.

If we were having coffee, I would tell you that I finally decided to contact an independent client supporter re my care situation on Tuesday. These are not affiliated with the care agency, but can help clients with their care plan or finding the right care. The person I spoke to on the phone, asked me a few questions and then would forward my info to a client supporter for my area. This person called me on Friday and we’ll have a phone appt on Wednesday. Unfortunately, somehow, her E-mail confirming the appt and giving me her details didn’t reach me, so I’m going to call her on Monday to let her know.

If we were having coffee, I’d let you all know I’ve decided a whole lot needs to happen if I want to actually stay at my current care home. After all, like I didn’t yet say in my previous coffee share post as I didn’t know back then but have written about since on the blog, the meeting between the behavior specialist, my assigned staff, mother-in-law and possibly me got canceled again on March 2 and has now been set for this coming Tuesday. Apparently, my support coordinator won’t be attending. However, since my last mentioning that I saw some potential for it to work out here and now, I’ve had a few really hard conversations with my assigned staff. These conversations made me feel as though there’s little or no room for improvement. In one of our last ones on my care situation, in which I’d pointed this out, she suggested I go back to living with my husband. This would have been an understandable question from someone who has no clue about my care needs. I’m in fact half expecting this question from the client supporter too. However, my assigned staff should know better. The fact that she – one of the staff who’s most accommodating to my needs – asked this question, to me underlines the fact that this care home’s staff are either clueless or careless about my needs, possibly both. I mean, she meant well and didn’t mean to push me. She said that, while living with my husband would no doubt be hard, so is living here for me. Her reasoning also was that, if she were to marry someone, she’d do so with the intention of living with them. Well, our intention for marriage was to prove to each other that we want to remain a couple for life, nothing more, nothing less.

If we were having coffee, I’d share that once again my exercising has declined over the past week. I in part blame the weather. However, yesterday I took up the courage and went up to another client’s room to ask her and her staff whether I could go on her stationary bike. Turns out it’s not her stationary bike at all, but the home’s. I went on the bike for only eight minutes (and four seconds, to be exact 😉). Today, I did go for two longer walks, totaling 73 exercise minutes on my Apple Watch.

If we were having coffee, lastly I’d tell you I’ve picked up soap making again. My soaps aren’t great so far. I made a simple butterfly soap on Thursday fragranced with lemon and pink grapefruit essential oils. Yesterday, I made another butterfly with lavender and ylang ylang essential oils, but decided to add some mica powder too as a colorant. However, I had no idea yet how to add micas to melt and pour soap, so messed it up quite a bit by adding way too much mica and also adding it to a white rather than clear soap base, among other things. I guess one never stops learning.

How have you been?

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.

Gratitude List (March 3, 2023)

Posted on by Astrid

Hi everyone. I’m feeling a bit gloomy today, so I’m trying to cheer myself up with a gratitude list. As always, I’m joining Ten Things of Thankful (#TToT). I’m also joining Thankful Thursday, although it being Friday, I’m of course a day late. Better late than never, I guess. Here are my thankfuls.

1. I am grateful for my new laptop. My husband installed Windows and JAWS, my screen reader, on it last Saturday and brought the laptop here on Sunday. So far, I’ve not run into many problems.

2. I am grateful for my unicorn cookie/clay cutters. Like I mentioned a few times, these are a Valentine’s Day present from my husband. I haven’t used them yet, but I think I do like them.

3. I am grateful for some renewed creative inspiration. Too bad this doesn’t really translate into action yet. Here’s hoping it will. I’ve been thinking of restarting soap making again, for example.

4. I am grateful to be back in the reading groove.

5. I am grateful for sleep. Although early in the week, I didn’t sleep all that well, last night and the night before, I did meet my goal of getting eight hours of sleep according to my Apple Watch.

6. I am grateful for improving physical fitness and more walking.

7. I am grateful my orthopedic shoes are back from the umpteenth adjustment. Let’s hope they’re actually right now. So far, at least, I have been able to go for a short walk on them.

8. I am grateful for another nice visit from my mother-in-law yesterday. Normally, she visits on Tuesdays every other week, but we were supposed to have the meeting about my care situation yesterday. The meeting was canceled, but thankfully my mother-in-law visited me anyway.

9. I am grateful for French fries for lunch yesterday with my mother-in-law. And fried chicken. And a little salad. It was delicious!

10. I am grateful for a relatively quiet past few days in the care home I live in with respect to hardly any out-of-control fellow residents. Well, I heard one screaming just when my staff was leaving me after dinner, but it seems calm again.

11. On that note, I am grateful I got through my latest crisis, which involved self-harm, without sustaining major damage. I usually don’t suffer major physical wounds, but I know with my most used self-harm method, it could happen any day.

What are you grateful for?

The Wednesday HodgePodge (March 1, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday again, so I’m joining the Wednesday HodgePodge yet again. Here goes.

1. Hello March! Is it coming in like a lion where you live? How do you feel when it rains?
I have no idea what the saying that March comes in like a lion means. Probably something about rain, given the next part of the question. If I’m correct, no, it doesn’t rain here. It’s cold though: 7°C at midday and -4°C at night.

I generally don’t like rainy weather, though I can handle it better than I used to like a year or two ago.

2. What’s something you’d like to do differently this week than the last? Explain.
Last week was better than this week has been so far, so honestly, I wouldn’t really change a thing.

3. March 1st is National Sunkist Citrus Day…do you drink orange juice? Orange, lemon, lime, tangerine, grapefruit…what’s your favorite citrus fruit? A dish you love with a citrus fruit as one of its key ingredients?
I don’t usually drink orange juice. It’s not that I don’t like it, but it’s not among my favorite drinks either. My favorite citrus fruit, if I have to choose one, is the tangerine. I honestly don’t care for anything citrussy except for its scent in essential oil blends.

4. What do you consider to be your culture. Elaborate.
This is a tough question. I don’t particularly associate with my native language (Dutch) or country for that matter. I initially wrote that I sort of consider myself European, but that’s not even true, since I do write in American-style English on my blog, for instance. The only thing that makes me more “European”, besides the obvious fact that the Netherlands is in Europe, is the fact that I’m quite progressive.

Then there are other identities. I am part of many communities online that consider themselves as having a specific culture, such as the autistic/neurodivergent community. I however don’t really associate with that as a culture either. These are more things that define my identity than my culture. These include my gender, race (although that’s a bit problematic for me to admit as a white person, but it’s true), etc.

5. Sum up your February in fifteen words or less.
Not good, but better than January.

6. Insert your own random thought here.
Wanted to share that my husband did bring the unicorn cookie/clay cutters that were supposed to be my Valentine’s Day present last Sunday. One is a rainbow, the next a unicorn head and one a unicorn. I haven’t yet had the chance to try them out.