#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.

Phones #SoCS

Posted on by Astrid

Today’s prompt for #SoCS is “phone”.

I’ve had an iPhone for just over seven years now. Before that, I had a sturdy regular cellphone. I once had the earliest model of a smartphone-like thing, a Nokia 6230i, but I could still only use it to make calls. I got it with my then new phone plan because I wanted to make use of a scheme by which cellphone calls would be charged landline fees. Remember, it was 2007, so cellphone rates were still very high and I didn’t have a landline. That is, I wanted to get one while living independently in Nijmegen but had just got it installed when I landed in crisis. I in fact had my home phone that I intended to use in my apartment with me when I was hospitalized.

The reason I could only make calls with a phone that was almost a smartphone, is the fact that it didn’t have MobileSpeak, the earliest excuse for a phone screen reader, on it and it couldn’t get it installed even if I wanted to. I’m surprised at how things have changed. Then again, I really shouldn’t be surprised. Life progresses, after all.

My current iPhone, I use for all kinds of things, almost like a handheld computer. That is, not actually almost, really, since I don’t even take my iPhone with me when I leave my room. I really want to do that more, so that I can take pictures when I notice something interesting. Like the rainbow my staff saw a few days ago. I really wish I’d had my phone with me then.

Friday Feels (September 13, 2024)

Posted on by Astrid

Hi everyone. Today I’m participating in Friday Feels. The idea is to answer three questions about the past week and share an F word related to it. The questions are:


  1. What made me happy?

  2. What made me sad?

  3. What made a difference?

F word

My F word for this week is “fall”. Last Saturday, it looked like summer wasn’t going to end anytime soon, since the daytime temperature reached 27°C. From this past Monday on though, the weather’s been considerably chillier and rainier. On Wednesday, the temperature didn’t even get above 14°C. Today is slightly less chilly, but the nights are truly getting colder.

What made me happy?

First, Chinese takeout for dinner on Monday to celebrate a fellow client’s birthday.

Second, a treat of one of my favorite biscuits with my afternoon coffee today.

Third, the fact that I was able to get the WiFi on my iPhone to work properly again here. It turned out that turning off a privacy setting on my phone for this particular network, solved the issue.

Last but certainly not least, swimming! On Wednesday, I heard that two of my fellow residents were going swimming at the institution pool that evening. Usually, about seven or eight residents go and it’s too overwhelming for me, but since there was another activity too, just these two guys were going. I took up the courage to ask my staff whether I could go too. It was amazing!

What made me sad?

I experienced a slight increase in bad memories over the past week. Mostly, they were manageable, which is why I’m not using the word “flashback” to describe them.

What made a difference?

There are several things that made a difference this week. First, the fact that one of my trusted staff returned from vacation this week. Most are still on holiday, so the next few weeks will be somewhat difficult still, but I managed this week.

Second, the weather, like I said, is very different and it made a difference, in that I could sleep under my weighted blanket without sweating excessively. This is important, because until now I thought something might be wrong with me. I guess not.

Third, the new agreement that staff will no longer unlock the door for me when I want to elope and will physically restrain me if necessary to keep me from for instance climbing over the fence. I saw the agreement on Tuesday and, though I still have some questions about it, I am for the most part relieved about it.

Attention Is a Valid Human Need

Posted on by Astrid

Hi everyone. One of the prompts for this week’s Writer’s Workshop is to write a post based on the word “attention”.

This immediately brings back a flood of memories of my time at the intensive support home. On one particular occasion – but I’m pretty sure there were many more -, a staff said to her coworker about a client in crisis: “It’s all attention.” She said “attention” in English, not Dutch, apparently hoping the client in crisis or his fellow clients (including me) wouldn’t understand. One of my fellow clients immediately chimed in by translating her comment into Dutch.

The idea that challenging behavior is “for attention” is often not entirely based in truth. However, even if it is, attention is a valid human need. And especially at the intensive support home, clients routinely didn’t get it.

You might think we did get more than enough attention, since the staff/client ratio is 1:2 to 1:3 at this home. But more often than not, staff were doing stuff on their phones, chatting to each other and on at least one occasion, I caught two staff playing a board game together and the third cheering for them. That third person was my one-on-one for the moment, but, because I was also playing a game with a fellow client, the staff thought it not necessary to pay attention to me. Then when I started showing signs of distress, he missed them until I ended up in a meltdown, then told me I could’ve said in a calm voice that I wanted to go to my room. Well, guess what? One of my first signs of distress is an inability to communicate effectively.

On another occasion, the fellow client about whom the staff felt the need to communicate his “attention-seeking” in English, was having an outburst again. I told my one-on-one for the moment that I could see why, because he’d been left to his own resources, often locked in his room, for most of the day. My one-on-one told me he’d had more than enough attention, since he had been having a cup of coffee with the client and had created his day schedule. As if a fifteen-minute coffee chat means you can be left alone for the rest of the day.

Remember, I and my fellow clients have a developmental disability. Most of us cannot participate in everyday conversations among non-disabled people, so when the staff are chatting to each other, most of us will feel left out of the loop. And just because staff are in the same room with us, doesn’t mean they’re attending to our needs, as my example of the board game illustrates. At that point, I needed someone to pay attention to the subtle signs that I was going to land in a meltdown.

And like I said, attention is a normal human need. Staff aren’t telling each other that they’ve had more than enough attention because they’ve had a break (that usually lasts for 45 minutes, four times a day) together. In my opinion, honestly, they should.

10 on the 10th (September 2024): This or That?

Posted on by Astrid

Hi everyone. Today I’m participating in 10 on the 10th. This month, it’s a fun this or that. Let’s get into it.

This or that: A long term meaningful relationship with someone you see only once a year (platonic or otherwise) or lots of short term relatively meaningless relationships with people you see regularly.
This is a toughie, as I’m not sure what “relationship” means. Do professional relationships count too? In other words, would I be completely on my own aside from the one time a year I’d see my significant other? That’s impossible for me. However, if it means not having any real connection with anyone else but they could still help me (yet how would we define “connection”?), I’d definitely choose the one meaningful relationship. I, after all, would choose my spouse even for a once-a-year visit over all the meaningless interactions with my staff. I however do need to receive care.

This or that: A bouquet of fresh flowers every week or a flowering bush every year.
A flowering bush every year! I don’t really care for bouquets of flowers and I’d love a flowering bush in my yard-space-thingy at the care home.

This or that: A luxury, all expenses paid cruise to the Antarctic or a week in a beach shack off the beaten path.
A cruise to the Antarctic. I’m not a fan of the cold, but no-one said we had to leave the ship. And I don’t care for beaches.

This or that: Pumpkin spice everything or pumpkin spice nothing.
Pumpkin spice nothing. The only thing with pumpkin spice in it I like a little is coffee, but it isn’t like I don’t enjoy coffee without it.

This or that: Warm, sunny days with high humidity or cold, sunny days with little humidity.
You’ll probably be surprised here, but I’d choose the cold but sunny days with low humidity. Having recently experienced warmer, high-humidity weather, I feel that as much as I loved the heat, I hated the humidity. Last night, in fact, was my first night of not sweating profusely and I am so glad for it.

This or that: A vintage real fur coat or a new faux fur coat.
New faux fur coat. Until I read Marsha’s answer, I didn’t even realize faux fur is bad for the environment, so I thought choosing the new faux fur coat would be a win-win: new coat plus less animal cruelty.

This or that: The car of your dreams wrapped with a logo of some kind or the car you currently drive.
I don’t drive a car, since I’m blind, so I’m going to choose for my spouse and we’re both happy with the “Freezer Fiat”, my nickname for the car my spouse currently drives. My spouse, in fact, only started the lease on it last January and this one is pretty much our ideal car. In this sense, I get it both ways. Although I personally wouldn’t mind a logo, I know my spouse wouldn’t tolerate it.

This or that: Beautiful stilettos crafted specifically for your feet or sneakers you’ve worn and molded to your feet.
I guess the point of this one is to choose between beauty and comfort and, if you’ve read about my shoe saga, you know I’d choose comfort. My orthopedic shoes are quite ugly but they’re comfortable. Same for my walking shoes, which I actually think are sneakers. Besides, I absolutely cannot walk on heels so stilettos would basically mean a life without walking.

This or that: The house of your dreams painted in colors you despise or a small cottage you can paint in colors you love.
I would personally choose the house of my dreams, but since that basically is a small cottage because I’d get lost in anything larger, I get it both ways again. I am blind, but still would love to have my little living space painted in all pastel lilacs and pinks.

This or that: Your favorite food every day for a year or foods you’ve never tried every day for a year.
My favorite food everyday for a year. I don’t like to try out new foods and would hate to have to try new foods each day for a year. Of course, it would get a little boring eating the exact same food everyday, but I’d take that over having to try out something I probably won’t like.

#WeekendCoffeeShare (September 7, 2024)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s 7:40PM as I start writing my post, so like most times, I’ve had my last cup of coffee for the day. I will have a glass of my favorite soft drink in about half an hour and after that it’s just water, or maybe a cup of bedtime tea. However, I’d love for you to join me for a virtual cup of coffee. Let’s get into my post.

If we were having coffee, first I’d rave about the weather. After all, if you know me, you know that in my opinion summer is the best season. It’s September, but the weather is still summer-like. During most of the week, we had daytime highs above 25°C. Tomorrow, it’s supposed to cool off slightly and after that, sometime next week the temps are supposed to drop to 15°C.

If we were having coffee, I’d tell you that I got in a lot of exercise minutes over the past week, mostly walking. I’m doing a challenge with my spouse on our Apple Watches that lasts up till this Monday and so far, I’m doing much better. I had expected to be slightly better because my spouse is a truck driver, but then again we have the same movement goal even though I’m shorter and as a result lighter than my spouse, which means I burn off fewer calories with the same activity.

If we were having coffee, I’d share that I had my second play therapy session on Wednesday. The first was a bit of a disappointment, because as soon as she saw my staff, the therapist started saying I could come alone next time. I felt mostly disappointed about the fact that she hadn’t asked me or my staff why I need a staff to attend our sessions. When I explained this at this week’s session, she was totally cool with it.

We mostly played with PlayMobil®, which was really intriguing. I did overshare a bit this week, which I later regretted. It feels really challenging to set healthy boundaries, which is one of my goals that I told the therapist about.

If we were having coffee, I’d share that I spoke with my support coordinator again today. On Monday I had a meeting with her and the behavior specialist. One of the things I’d asked to be implemented as soon as possible, is the agreement that staff won’t unlock the door for me when I’m in crisis and will, if necessary, physically prevent me from leaving the home. I had since wondered where the agreement that the door be unlocked came from. I looked at my support agreements, but there was nothing. Today, my support coordinator looked all through my file and couldn’t find the agreement either. This frustrates me, as honestly I have no idea who came up with it. It wouldn’t have been as frustrating, had this not been interpreted as a rule by literally all staff, even staff who hadn’t previously let me out the door. I mean, on Thursday I said I was leaving in an agitated tone and immediately the staff said she’d unlock the door for me. It frustrates me to no end that staff are making rules that they don’t write down and that, as a result, can’t be discussed with me. I hope that, once my support coordinator writes the agreement that I can’t be let out the door, which she’s going to do on Tuesday, this at least will stop in this case. I’m pretty sure there are many other unwritten rules about my care though.

If we were having coffee, lastly I’d tell you I’m really feeling like doing something with polymer clay again, but I am rather uninspired. I did try to make a flower pendant this evening, but so far it’s just a cut out flower with no detail.