Decisions Made for Me

Posted on by Astrid

Hi all. I’m joining Denyse’s #WWandPics once again. This week, she talks about the letter D words that relate to her, among which “decisions”. I wanted to write about decisions too, but this time, about the reality of decisions being made for you. This may not happen to non-disabled adults much, but it happens to me all the time.

Like with my upcoming move. I know next to nothing about my future care home and, when I told my assigned staff that this frustrates me, she pointed out that I’ll move there anyway so how would giving me more info help?

Honestly, I wish I were given some way to have any level of input into the process. I know the reason the powers-that-be have decided to give me no choice is probably because they feel I’m too critical anyway. They believe I’m looking for the perfect home, which they and I know doesn’t exist given my rather complicated care needs.

They always tell me that I wanted to leave the care facility in Raalte, which was near-perfect compared to my current one. I did, in a way. That is, I wanted to have a discussion with the behavior specialist to explore the possibility of me finding another care home. That’s not the same. And they were the ones not being up front with me about all the things I’d lose if I wanted to live on institution grounds and have fellow clients with whom I could speak. They may’ve technically allowed me to make the decision to move here, but they gave me the bare minimum amount of information to make that decision.

Now they’re not letting me make a decision at all. It makes me feel intensely powerless and that’s a really distressing feeling. And who will be in trouble if my behavior doesn’t improve? Yup, me. Some staff have come to call me spoiled, in fact, so the burden is on me to show them I can handle whatever this new home has to offer. If I can’t, well, too bad, then I either have to learn to live with the decisions made for me or find myself another way to cope.

The Wednesday HodgePodge (August 23, 2023)

Posted on by Astrid

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

1. What’s your earliest memory?
My third birthday. My paternal grandma brought me a doll from Berlin and my father taught my sister and me the German word for “doll” (“Puppe”). My sister and I, of course, laughed really hard about this, as “Puppe” sounds just like the Dutch verb for “poo”. The doll, by the way, is named Roza, because my father also said Rosa (but then again, as a child I had no clue how to spell it) is a German name.

2. What’s something about you today that the old you would find surprising?
The fact that I live in an institution. Until I was about 25, living in an institution was my worst nightmare.

3. Do you like to fish? Are you a fish eater? Favorite fish (to eat)? Favorite way to prepare fish?
I’ve only been fishing once and found it intensely boring. Then again, I can’t see so that takes away what little fun I imagine there is to fishing.

I do like fish, but usually just the once with the not-too-distinct flavor. The only exception is tuna, which I love and would probably be my favorite fish to eat. When my sister turned vegetarian and showed my parents info about the unethical consequences of tuna eating, they for a while refused to buy it. I got really upset.

4. What’s your biggest first world problem?
I’m not sure whether my unsuitable care home counts as a first world problem. I guess it does, since most disabled people in developing countries don’t have a choice where they live at all. Neither do I at this point, in the sense that I know next to nothing about my future care home and am told that since I’m moving anyway it’d be pointless to give me more info. I have a post scheduled for tomorrow on this topic. In any case, I’m still fortunate in many ways I guess.

5. What one word would you use to describe your year thus far?
Chaos.

6. Insert your own random thought here.
I almost broke my record of active calories burned on my Apple Watch today. Honestly, I think relatively speaking I already broke it, since my last record dates from September of last year and I weighed 12kg more than I do now, so burned off more calories with the same physical exertion. I still need 20 exercise minutes to break my exercise record (which I set on the same day), but I won’t do that. Those 15 active calories I still need to burn for my movement record should be doable though. Today, unlike the time I set my old record, I did a variety of workouts: walking, swimming, the stationary bike and dancing.

Colors, Changes and Connections

Posted on by Astrid

Today, I am joining Denyse’s #WWandPics link-up. Denyse apparently has been sharing posts following an alphabetical theme. Today, she talks about the letter C. I could do this alphabet thing too, but then I’d have to start at A. Instead, I’m taking inspiration from her “C” words to write my post.

Denyse’s first “C” word is “change”. Of course, things are changing in my world too, though I’m not yet sure when. I got informed last Saturday that my new care home will keep my current day schedule for now. That’s in spite of the fact that it apparently indeed does cover two hours more care a day than I get funding for. I still don’t fully understand the technicalities, but I don’t really care, as the number of support hours I get according to my day schedule was never the problem. It was how cut up into at most 60-minute activity blocks it is. It’s okay though. Better than the alternative my staff have been suggesting, saying I need to find a way to cut back on those two hours and go down to 30-minute activity blocks.

I asked my support coordinator about having a care plan review. We haven’t had one in nearly two years due to my moving to my current home right when my last review was due. My support coordinator is going to get the new one to schedule a review once I’m settled there and he will attend too.

He also finally sent my mother-in-law an activation code to access the daily reports on me and my care plan. As far as my mother-in-law is concerned, they mostly report really superficially. For those who are wondering, back several years ago it was agreed upon that I wouldn’t get access because it might cause distress, but I did want someone in my family to have access especially now that I’m struggling significantly. Most daily reports apparently go something along the lines of “mostly had a good day, slightly stressed over ___”. I don’t know whether it’s deliberate, but that’s certainly downplaying my distress.

The support coordinator for the new home did ask my current support coordinator to confirm what color paint I want on my wall, despite the fact that I’m pretty sure I already told him through my mother-in-law. It will be pink, since lilac wasn’t available. Truthfully, all other colors except maybe blue sounded awfully ugly to me. And yes, despite being blind, I do have some concept of color from when I could still see a little.

Through all this change, I am happy about my online connections. I have multiple disabilities, so am in Facebook groups for various conditions. I am also in a few Facebook groups for former preemies or NICU babies in general. The Dutch one is organizing a get-together in September. I sent the organizer an E-mail to sign up, then decided to ask some further questions in the Facebook group. As far as I’m aware, the get-together will be held in a café-style meeting room, so I’ll most likely be able to get the ParaTransit taxi driver to get me right to where I need to be. On the one hand, I’m reminding myself that I used to attend the DID charity meetups independently each month from 2011 till 2013 and even rode the train there by myself. On the other hand, it’s 2023, not 2013 and I’ve probably declined cognitively at least a little. Then again, if I don’t try, I’ll never know if I can do this. I would really love to connect to other NICU survivors, as honestly I’m beginning to realize I might not be alone in experiencing significant attachment issues and they might in fact have started this early on.

Can’t Wait to Leave

Posted on by Astrid

Today’s prompt for Five Minute Friday is “leave”. I am pretty sure this or a similar prompt came up before when I was in the process of finding what turned out to be my current care home. Maybe not on Five Minute Friday but on Stream of Consciousness Saturday or the like. Well, now that it came up on FMF, even though I’m not an actual Christian like most of the participants, I thought I’d join in. So, here goes.

I can’t wait to leave this nightmare of a care home. Today, a fellow client was being severely out of control right in front of my room and my would-be one-on-one had to leave me to attend to him because her colleague was alone attending to “the group” (ie. everyone except another one-on-one client). I felt it was unfair, because that other client’s one-on-one is non-negotiable, while my staff keep claiming I need to cut back on my hours. Well, I could not do any activity at all with how long it took the staff to attend to this other client and then bluntly tell me, once melting down, to calm down, etc.

I can’t wait to leave this nightmare of unclear and mostly very harsh treatment that I receive here. I mean, I’m not aggressive, but I get treated like I am.

I am hoping to find out when I’ll be moving to my new care home real soon.

I sometimes feel left alone on this journey. I try to turn to God, even though I no longer subscribe to traditional Christian beliefs. I really do hope that, even if (which I’m pretty sure is a “when”) I’m left all alone in this world, there’s someone out there who cares.

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.

July 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means it’s time for my monthly reflections. As usual, I’m joining in with What’s Been on Your Calendar? (or #WBOYC for short).

This month was a toughie once again. All I had to keep me going was an E-mail from the behavior specialist at the end of June saying that they were still investigating a possible new home for me, so I hadn’t been forgotten. This didn’t do much to perk me up, honestly. At the beginning of the second week of the month, my mother-in-law E-mailed her to request extra supports. We had been discussing her asking the behavior specialist to come round to talk to me every once in a while to keep me from spiraling further into crisis before, and in fact my mother-in-law had requested it before, but that message had not been responded to. This time around, it turned out the behavior specialist was on vacation till the end of the month. I’m pretty sure given her work schedule, she should be back tomorrow, but even though our E-mail was sent pretty early in her leave, I’m skeptical that she’ll respond then.

Of course, I did find out on the 23rd that a new home has been found for me. Like I mentioned last week, the way I found out about it was rather weird and I don’t know anything about the home other than what my care agency has on its website about it. A moving date hasn’t been set either as far as I’m aware and I won’t be informed till about two weeks in advance. My assigned staff asked me today whether I keep wondering when I’ll be moving. Yep, of course.

In other news, my support coordinator did leave the agency a few weeks ago. I can’t say I miss her, as I can talk to my new one much more easily. Still, I’m glad I’m leaving this place in the hopefully not too distant future.

I haven’t really been crafting much over this past month. The only thing I finished, in fact, is a bracelet with the glass beads I got from my mother-in-law for my birthday. Today, I did finally get round to claying once again. And got my hands all blue from handling alcohol inks without gloves.

I also didn’t walk as much as I did last month over this past month. I honestly don’t really care though.

Since iOS 16.6 resolved the Braille display bug that caused me to be unable to read books on my iPhone, I have been reading more over the past week. I also finally bought a blender, so yay for smoothies!

Here’s hoping August will be a better month than the past few months have been.

#WeekendCoffeeShare (July 29, 2023)

Posted on by Astrid

Hi everyone. It’s been a while since I last joined in with #WeekendCoffeeShare, so I thought I’d write a post for it. I just had my evening coffee, as is usual when I sit down to write these posts. I may still grab a cup of green tea later though, since, like I mentioned yesterday, I started using the Water Reminder app again. If you’d like a drink, cold or hot, join me and let’s chat.

If we were having coffee, I’d first share about the weather. It hasn’t been summerlike, honestly. Rather rainy and the daytime temperatures barely got above 20°C. It isn’t supposed to get any better soon.

If we were having coffee, then I’d repeat myself by shouting off the rooftops for all of the Coffee Share crowd to hear that YAY, I AM MOVING!!! Of course, as those who read my post from Monday will know, I hardly know any details about my new care home and a moving date hasn’t been set. However, the bits of information I do gather, make me feel like this could be quite positive. I mean, it’s not likely my dream home or anything, but then again that was supposed to be this one, only that dream turned into a nightmare.

If we were having coffee, I’d tell you that I’ve been spending more time among my fellow residents lately. It’s not really my choice, truthfully. In part, it’s because I look for familiar faces in the communal room when I get assigned the umpteenth new temp worker. Then when I do get a familiar staff, they often ask me to join the group too. This morning, my one-on-one for the moment sincerely claimed another resident had asked me to come play a game of dice, but I’m not 100% sure it’s true with all the times the staff are initiating it. For those who don’t know, me being in the communal room, unless I’m indeed playing a game with the aforementioned fellow resident, usually means me sitting around doing nothing while the staff chat among themselves or scroll on their phones, thereby my not doing any meaningful activity. Besides, I usually get overwhelmed very easily, but the staff expect me to be able to tell them rather than them picking up on my signs. Today, I was extremely overloaded for over an hour after spending not even twenty minutes in the living room. With the fact that I’m moving, I’m not sure whether the staff want me to practice functioning in the group more so that they can lessen my one-on-one, as that wouldn’t benefit them at all. However, I don’t see any other reason for them to initiate me being in the group so often.

If we were having coffee, then I would tell you I closed all my rings on my Apple Watch every single day this week so far. That’s quite an accomplishment lately, as in late June, I broke my 300-odd day streak of meeting my movement goal and I once again didn’t meet it last week. I honestly have been rather unmotivated in the exercise department recently. This week though, I logged more workouts – mostly walking – than last week.

If we were having coffee, lastly I’d share that I’ve generally been really uninspired over the past couple of weeks. I did make some simple smoothies with my new blender earlier this week, but other than that, I hardly did anything creative. I can only hope I can change this sooner rather than later.

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.

Physical Discomfort

Posted on by Astrid

I have been experiencing a lot of nausea lately and a bit of a decreased appetite. At first, I attributed the nausea to stress, then norovirus which was making its rounds here at the home. I was really sick with diarrhea and vomiting for only a few hours though, so it’s not even certain I had the virus.

If I have to be true to myself, I’ve been feeling a little unwell for a couple of weeks already. However, it’s really hard for me to tell when I even feel physically unwell and, if so, whether it’s “just” being a little off or it’s something I might need to see my GP for. For this reason, I usually keep going with physical discomfort for months. And even though alertness to my physical wellbeing is one of my care goals, my staff expect me to be able to signal to them when I’m having symptoms (and even when I do, it takes forever for them to take action).

Today, I did ask my staff to call the GP surgery tomorrow to inquire about my kidney function. It’s been decreased for at least a year and, even though I’ve had regular blood tests, I haven’t seen or been told of the results since the summer of 2022.

And guess what? Nausea and decreased appetite are a possible kidney disease symptom. So is itchiness, which I’ve had very badly for months. I don’t mind either symptom as much, in the sense that despite the decreased appetite I’m still eating well and I could continue putting cetomacrogol cream on my skin forever if the itch is nothing to worry about. But I want to make sure my kidney function hasn’t gone significantly further down.

And if it has – and honestly, even if it hasn’t -, I want a consultation with a psychiatrist to discuss tapering my psychiatric medications. I know, the ones that could cause kidney failure are the last ones I started – topiramate and pregabalin -, but I doubt either is very effective. Besides, I just don’t want to keep adding on to my med pile and, if my kidneys show further damage, I’ll need to go on meds for that too.

Let’s hope the staff don’t forget to actually call the GP tomorrow.

How My Attachment Style Affects My Decision-Making

Posted on by Astrid

Hi everyone. I have been contemplating my decision to move to my current care home from the previous one a lot lately. My assigned staff often asks me whether I might be a little too critical, because my old care home offered near-perfect supports and yet I wanted to leave. Indeed, it could be this is a factor. I’m an Enneagram type 4, after all, always looking for that elusive ideal.

However, I am also insecurely attached. Attachment is formed in early childhood between the infant/toddler and their primary caretaker. When there is frequent disruption in this attachment and/or the caretaker isn’t a safe person for the child (as in the cases of neglect or abuse), this attachment doesn’t form or forms insecurely. This then will lead to problems later in life with relationships, both romantic and otherwise.

The different attachment styles described differ per professional, but I primarily score as anxious-preoccupied. This means that I am essentially looking for close connections to people, be they my romantic partner or otherwise, but also intensely fear them abandoning me. I also relate strongly to the ambivalent attachment style, which is essentially a mix between avoidance and preoccupation. This would explain why I push people away when I sense they might be abandoning me.

This is where my decision to move out of my old care home comes in. Starting at the end of 2021, half the team of my old care home left their positions, including some staff I could get along with really well. I remember, shortly before making the decision to ask my assigned staff to involve the behavior specialist in finding me a new home, E-mailing that same assigned staff. The contents of the E-mail were rather, well, needy. I expressed the fact that I knew none of the staff currently working at my home could guarantee they’d remain with me for months, let alone years to come. I probably even mentioned my spouse, who, though we have zero intention of divorcing ever, might leave me eventually. That’s life. No-one can predict the future. And honestly, it kind of sucks.

Though my then assigned staff assured me my E-mail had nothing to do with it, she did indeed quit her job several months later. However, the fact that the team as it was when I got my one-on-one support funding, had pretty much fallen apart, gave me the impression I didn’t need to stay for the team. And since otherwise the home wasn’t suitable for me – because the other clients couldn’t speak and needed far more physical care than I did -, I started the search for a more suitable home. Which, as regular readers of this blog will know, I didn’t find. I mean, yes, my fellow clients can speak, but the support approach is very different and not in a good way from what I got at my old home.

My attachment style also means I often come across as very trusting, because I at least initially accept everyone into my life because I have such an intense fear of aloneness. This is often misjudged to be a sign of secure attachment. In fact, recently a relatively new staff tried to get me to join him on a car trip to get food for just the staff during my designated activity time. I felt kind of lured, because I didn’t want to but he was like “it’s fun, I’ll buy you a treat too” and then I didn’t feel comfortable refusing anymore. This should’ve been a big no-go had this person not been a staff member, but since he’s a staff member it was okay, according to one of the other staff I talked this over with. What this staff didn’t realize is that I’ve had previous experiences of risky encounters with men and a history of being a victim of sexual violation too. And, though of course my easily accepting others isn’t to blame for any victimization (that would be victim blaming), it is important to realize I don’t distinguish between those in a position to help me and those who aren’t, like that staff person believed.