#WeekendCoffeeShare (October 12, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s nearly 9PM, so long past my last coffee break for the day. However, I’d be happy to pass you a virtual mug of your favorite beverage. My spouse is in search for pumpkin spice latte. Since my blog readership is mostly international, I doubt anyone could recommend a place to find it tomorrow local to here and my spouse can do a Google search too. Anyway, let’s have a drink and let’s chat.

If we were having coffee, I’d start by sharing about the weather. It’s been quite cool with daytime temps below 15°C most days. Today, the daytime high was as low as 12°C. Brrrr! We’ve also had some rain, though none today or yesterday. Next week, we’re supposed to get one day with a daytime temperature of 21°C. Sadly, rain is in the forecast then too.

If we were having coffee, I’d share that, this week, I did okay with my exercise. I didn’t meet my goal everyday, but I don’t care.

On Thursday, a staff and I were riding the side-by-side bike to a nearby town, so that I could pick up a package. (As regular readers of my blog know, package delivery to the institution is hit-or-miss, so I set up a pick-up point in the nearest town as my default delivery address with DHL.) The road leading directly to the town was under construction, so we headed another way. When we were in the next village, the bike got a flat tire. The staff called the home to have someone else pick me up by car and he himself walked to the care home with the bike. It’s really frustrating, because this bike had just had major repairs.

If we were having coffee, I’d share that I did pick up the package yesterday. When in that town, we noticed it was market day. We decided to get some fried fish. Then, when coming to another stand, we heard something about an offer by which, if you’d bought something from four vendors, you could draw a prize, like a voucher. We went back to the fish stand and asked for them to sign our card too. I visited the fish stand like I said, the veggie/fruit stand (where I bought raspberries and lemons), the nuts stand and the olive stand. I then went to draw the prize and it was a €5 voucher. I spent that on licorice. Of course, most food at farmer’s markets is more expensive than at the supermarket, but I love the experience. By the way, if anyone has any ideas for what to do with lemons, your suggestions are welcome. I thought many smoothies had fresh lemon juice in them, but only a teaspoon or so and I have six lemons.

If we were having coffee, I’d tell you that I did a lot of baking over the past week. On Tuesday, I tried baking cookies from a store-bought mixture, but those didn’t turn out good. I then decided to give cookie baking another try on Wednesday, making the cookies from scratch. That was much better! Finally, today, I baked a cake. Don’t tell my dietitian, as I’ve probably gained weight. Weight management can wait.

If we were having coffee, lastly I’d tell you that I got a new day schedule. It doesn’t look much different, but there are some significant improvements. For example, it’s now clear who will be supporting me during the day. The weekend schedule is also now the same as the weekday schedule. I haven’t yet read the schedule myself and, judging from what the staff are saying, it does need a few small tweaks. I’ll discuss this with my assigned staff soon.

Speaking of which, I got a new second assigned staff. I have had one staff as my assigned staff for a few months, but she only works one or two days a week. I now got one of the student staff as my secondary assigned staff. I think she’s quite good at her job despite just starting out.

How I Coped With Losing My “Job”

Posted on by Astrid

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

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

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

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

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

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

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

Friday Feels (October 4, 2024)

Posted on by Astrid

Hi everyone. I have a ton of ideas of what to write about floating in my mind, but because of this I struggle to pick one. I’m going with Deb’s Friday Feels. I loved coming up with an F word last time.

F word

My F word for this week is “fruit”. Like I mentioned earlier, I bought a slow juicer. My spouse cautioned me against using it daily because of the risk of microplastics getting into my juice, as the juicer is a Chinese brand. For this reason, I’ve only used it once so far and only juiced an apple.

I since discovered that I can do far more with my blender (which is safe to use according to my spouse) than I used to think. I mean, I have one book of smoothie recipes that has a ton of juice-based ones in it, like recipes for which you need carrot juice, blueberry nectar (which I found out is just sweetened, thickened blueberry juice), etc. I decided to look beyond this book, as I have many other books on the topic of smoothies and juicing.

Today, I made my first green smoothie. Of course, I didn’t use just greens, as that’d make the smoothie taste horrible. I used spinach, pineapple, banana and coconut water. I think this smoothie can compete with the smoothie I made a few weeks back that I said was my favorite. My fellow residents loved it too.

What made me happy?

I’m in a pretty good mood, but there’s little specifically that made me happy. Then again, being in a good space mentally is a good enough reason to be happy, in my opinion.

What made me sad?

Not sad per se. More like frustrated. A skin infection on my face. Thankfully, the staff finally saw that it needed treatment yesterday and the institution nurse agreed, so I now have a salve for it.

Oh, and the fact that the entire town was cut off from WiFi yesterday afternoon and it wasn’t solved until this morning. This is costing the institution lots of money, as the night staff rely on WiFi-connected technology to know when we need them, so now each home had to have its own night staff.

What made a difference?

Two things. First, my support coordinator is genuinely listening to me with regards to my struggles in play therapy and in general. I have this issue with being very much behind emotionally and I struggle with this, because sometimes I can explain the theory, but this doesn’t mean I can help myself in reality.

Another, somewhat related thing was the video interaction support I got on Tuesday. Then, it was just someone recording me and a staff interacting on video without any feedback, but I’m hopeful the staff will learn something by looking at the video at a later time.

Clawing My Way Out

Posted on by Astrid

There have been many times when I had to creep out of a very dark, deep pit of despair. I try not to wallow in depression, but, as an Enneagram type Four (and I in no way mean to blame that for all my shortcomings), I struggle to disengage from my feelings and actually live. That is, unless I so completely disconnect from my feelings that I’m in fact pretending they’re nonexistent, something that in turn can lead to my feelings eventually overpowering me and my falling back into the pit. When this happens, I can choose to either stay there or claw my way out and so far, I’ve thankfully always chosen the latter!

I’m thankful that, even though it’s fall and this is usually a season for misery and melancholy for me, I haven’t found myself in the dark valley yet. Let’s hope I can skip it this year!

This post was written for this week’s edition of Six Sentence Stories. The prompt word is “claw”.

It’s October

Posted on by Astrid

Hi everyone. It’s October. Several years, I’ve at least tried to participate in blog challenges, such as #Blogtober and #Write31Days. I saw that #Blogtober is running again this year, but I’m not officially participating. Still, I’m challenging myself to blog more this month. I did okay’ish in September.

Generally speaking, I don’t like October. It’s not as bad as November, but it’s not a fun month. Unfortunately, this year so far is no exception.

The weather’s bad, so I didn’t walk today except to a staff’s car to drive to a DHL service point to pick up a slow juicer I’d ordered online on Sunday. It’s a Chinese brand, so I may at some point regret having bought it because of the risk of microplastics in my juice. In fact, I’m already putting a good juicer and blender (my blender is not Chinese but it’s a cheap one) on my wishlist should I decide juicing and smoothie making is a true keeper hobby for me. I’m not buying either until I’ve waited a few months to make up my mind though.

I did start off this month with a new course on Duolingo: intermediate English. So far, most of it is ridiculously easy. Then again, the option I selected on the start screen to determine my skill level made the app think I’m at the early B1 level in the CEFR classification system. My spouse said my writing skills are probably C1 level at least but I’m pretty sure I miss some B level vocabulary. Let’s hope the course will aid in teaching me that.

#WeekendCoffeeShare (September 28, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again today. It’s nearly 10PM here, so no coffee for me. If you’d like some though, pour yourself a cup and let’s chat.

If we were having coffee, first I’d moan about the weather. I had to check back to last week’s coffee share to see if memory was serving me well, as I almost couldn’t believe the daytime high was above 20°C then. Today, the daytime high was only 14°C. It was raining all day yesterday and most of the day today too.

If we were having coffee, I’d tell you that, as a result of the rainy weather, I almost didn’t meet my movement goal on my Apple Watch yesterday. I was tempted to lower my goal for that day specifically, but my spouse convinced me that would be cheating. I then danced around my room for about 25 minutes so that at least I’d meet my goal. I didn’t meet my exercise goal, but that doesn’t count towards the perfect month award.

During most of the rest of the week, I didn’t walk much at
all either. On Thursday, however, I went swimming. This was great!

If we were having coffee, I’d share that I’ve also been quite fatigued lately. I’m probably starting to experience a touch of the seasonal blues.

If we were having coffee, I’d tell you that I had bloodwork on Monday. I had no idea why and in fact was convinced they got me mixed up with another client. Apparently not. However, I had already had breakfast and one of the things needing to be checked was glucose. I thought this would be problematic, but the nurse said it wasn’t. I finally found out the reason for the bloodwork yesterday: it was the fact that I’d been experiencing night sweats. I had long attributed those to the warmer weather, but then again they aren’t gone now (though they’ve lessened). Fingers crossed for all normal results.

If we were having coffee, I’d tell you that I had a meeting with my support coordinator, behavior specialist and mother-in-law on Monday. It was a bit difficult. Though I could see my support coordinator doing her best to help me, it was still quite hard to feel the limits of what she can do for me.

For example, I had been struggling with play therapy because a staff I don’t realy trust had been attending it with me. My support coordinator tried her best to find a somewhat trusted staff for me in the coming weeks but couldn’t, so I felt like giving in and accepting a staff I at least don’t feel bad about.

The next day, I had a candid conversation with my support coordinator. That was somewhat reassuring. Play therapy on Wednesday was still more or less useless.

If we were having coffee, I’d tell you that next week, I’ll be video-recorded in my interactions with a staff. The goal is for staff to look at the tiny signs that might lead to distress and things they can do or not do to help me.

If we were having coffee, I’d end on an upbeat note by saying I’ve been making a lot of smoothies lately. I don’t really have the energy for polymer clay or the like, but preparing a smoothie takes only five to ten minutes. I always create enough to share with at least some of my fellow clients and they truly appreciate it. My best one was a smoothie with pineapple, banana, coconut water and a pinch of cinnamon.

I also finally managed to make a delicious mug cake. I mean, the ones I made before were okay, but there was always something slightly off about them. The only thing about this one was the fact that I couldn’t wait for it too completely cool before consuming it. Otherwise, it was great!

“Feeling Blue” Makes No Sense

Posted on by Astrid

Hi everyone. I’m a little late participating in this week’s Sunday Confessionals, as rather than Sunday, it’s Monday night. However, as someone who only “sees” color as it’s presented to me synesthetically, I felt the prompt of “feeling blue” appealed to me.

Blue, as I see it, is not a sad color at all. As such, “feeling blue” has never truly had its intended connotation to me. Blue is the color of clear skies (at least, in our perception). I associate it with inward-directed energy. As such, blue is the color of the letter T, which represents “Thinking” in the MBTI. It might be associated with introspection, but it’s definitely not associated with depression. I’d choose grey for that instead.

I am not a color-to-emotion synesthete, although if I want to, I can describe the feel various colors have to me. Red is angry, as one might expect. Yellow, on the other hand, isn’t as upbeat as most people associate the color to be. I would describe it, depending on its shade, as slightly content in a light shade to optimistic in sunflower yellow. Give me green as the representative of joy anytime. And purple, and especially lilac, is authentic, even though there’s no purple letter in that word.

What do you think? Do colors have emotional meanings to you?

#WeekendCoffeeShare (September 21, 2024)

Posted on by Astrid

Hi all on this beautiful Saturday in September. I’m joining #WeekendCoffeeShare today. It’s 7:30PM, so I just had my last cup of coffee for the day. I also had a delicious smoothie I made. I must admit, I normally don’t make the best smoothies, or at least I don’t really like them myself. This one though was absolutely great! I used banana, pineapple, coconut water and a bit of cinnamon. The cinnamon was old, so even though I’m pretty sure I put quite a bit into my smoothie, I only got a slight taste of it. I shared what I had left with my fellow residents, but since this is a virtual get-together, you are invited to grab a virtual cup.

If we were having coffee, first I’d share about the weather. It’s been absolutely gorgeous with daytime temperatures of about 23°C most of the week. It’s also been quite sunny. Mornings are chilly, but then again it’s September, so that makes perfect sense. Tomorrow is supposed to be the last warm day and then next week daytime temps are supposed to drop to as low as 13°C.

If we were having coffee, I’d probably be stating the obvious if I said I’ve been walking a lot. I sometimes feel guilty when this is pretty much all I do during my allocated activity time. Then again, I tell myself the weather isn’t going to be as beautiful as it is now forever.

I also have been taking photos on my walks. That is, I usually hand my phone to my staff, who then will be snapping the pictures. I enjoy it nonetheless. Yesterday, we were able to capture a bunny.

I have also been loving using Be My Eyes and other image description apps. Be My Eyes was even able to correct me and my staff on what type of bird was swimming in the institution pond.

If we were having coffee, I’d talk a little about the new iOS and WatchOS versions that came out on Monday. They’re quite stable and there aren’t many bugs affecting VoiceOver or Braille use. That’s a rarity with the first release of a major software update. I didn’t initially think I’d care for iOS 18, but WatchOS 11 does have some nice features and I’d need iOS 18 for that. I am looking forward to seeing my Vitals trend in a few weeks.

If we were having coffee, I’d tell you that I’ve been struggling a little with flashbacks and nightmares. I am, thankfully, for the most part still able to cope.

If we were having coffee, I’d share that on Wednesday, I celebrated one year in my current care home. I treated the entire home to burgers again, like on my birthday, but this time the salad I made as a side dish was the highlight for me.

If we were having coffee, lastly I’d tell you that on Thursday, it was my and my spouse’s thirteenth wedding anniversary. We drove to Nijmegen to have lunch at what I consider to be my favorite restaurant, Dromaai. Not that the food is exceptionally good, but I have fond memories of eating out here with my partner when I still lived in Nijmegen.

September Dreams and Memories

Posted on by Astrid

Last night I dreamt of being admitted to the psych hospital. It’s no wonder, since the anniversary of my actual admission isn’t very far away, on November 3. September 23 is my anniversary of going into long-term care and last Wednesday, I celebrated one year in my current care home.

I was reminded yesterday that September is a bittersweet month. That is, I was reminded of the sweet aspect, ie. it being me and my spouse’s wedding aniversary yesterday. The bitter aspect has overshadowed my days with flashbacks and my nights with dreams more than I’d like. I am, thankfully, still coping.

I am hoping that, as I acquire more pleasant memories here at this home, the flashbacks and nightmares will lessen. I know I was saying something similar when reclaiming November in 2021. I hope this time around I will choose following my dreams and aspirations over re-enacting the past.

Sharing this post with Friday Writings #145, for which the optional theme is dreams and memories. This was more of a freewrite than anything else, but oh well.

Exploring “Safe Ground” in a Less Than Optimal Care System

Posted on by Astrid

I’ve been exploring the concept of “safe ground”. This is a buzzword in the long-term care sector, particularly in the care of people with severe challenging behavior. It is used to describe the idea that people are unconditionally accepted in their care homes and will not be kicked out for their behavior.

I’ve been feeling drawn to this idea, because I’ve been kicked out of services, or out of the particular service I used, for my behavior several times.

One video I watched on the topic of “safe ground” explored a care home for the most severely challenging individuals. As in, there are only 24 places in the entire country. I don’t know why I was drawn to this video, because I’m not nearly the most challenging resident on grounds here, let alone among the top 24 of the country. In fact, I would say that at least one of my fellow residents here at my home is more challenging than me.

There are two concepts to unpack here, which may or may not be related. The first is, why do I identify so strongly with the most difficult of clients in the care system when I’m probably somewhere in the middle? The second is, is “safe ground” only the idea that people won’t be kicked out for their behavior, or is it more generally speaking unconditional acceptance of clients with their unique needs?

I’ll explore the second concept now. I think “safe ground” means more than just not kicking out clients, and in this respect, it’s relevant to me. I think it means (or should mean) seeing the unmet needs behind challenging behavior. Seeing the person rather than the client. I still think that, even if I don’t end up being kicked out of here for my behavior, there’s still a world to win here. I am hopeful that, when the things we discussed a few weeks ago at the meeting between my support coordinator, behavior specialist and me, will be implemented, we’ll get close.

That being said, it’s still 2024 and this means no optimal care for anyone. I think one of the things I wish people would admit is that they’re having to deal with a strained system rather than blaming the client for their challenging behavior.

I ran into this yesterday, because there’s yet another change in staff hours, and yet the other support coordinator claimed everyone gets the attention they need. No, that’s not true, or it depends on how you define “need”. After all, most of us do mostly get our needs for physical care met, by which I mean we get dressed, showered and have something to eat. Most of us however are still routinely left to fend for ourselves when we’re struggling emotionally. I and the more challenging fellow client are the lucky exceptions to this rule. Even so, I would not call my care optimal. That isn’t going to happen and that’s sort of okay, but it makes a massive difference whether staff blame me or they blame the system. In other words, are we talking about things we as clients shouldn’t expect or things they cannot offer? The end result is the same, in that we have unmet care needs, but the latter is a lot more empathetic towards us.