Quality of Care

Posted on by Astrid

Hi everyone. Today, I filled out a survey by the Dutch disabled people’s lobby group Ieder(in) on the quality of my care and its impact on my quality of life. I filled out the same questionnaire in 2023, a month or so before moving to my current home. Back then, I rated my quality of care 2 out of 10 and ticked almost every box on incidents I’d been involved in (as a target).

Today, I could think of only one incident box to tick: incidents due to lack of oversight, such as elopement. I mean, I myself have been aggressive towards staff, but that’s not what was meant. I also rated my quality of care 5 out of 10. That’s still not good enough, but it’s a lot better than it was back at the intensive support home. As my wife jokingly said, maybe in two years I’ll rate it 8 out of 10.

That’s not even entirely impossible, because as I explained in the field for additional comments, the bureaucratic framework for better care exists. By this I mean that I have a budget for one-on-one care that’s sufficient and that on most days, the home isn’t too short-staffed to provide me most of the care I need. What still makes me judge my quality of care as insufficient, is the fact that the way my care is organized in practice, doesn’t work for me.

There was a question about whether you have familiar staff or not. Back in 2023, I think I answered that I almost always had unfamiliar staff. Now I can’t remember which box I checked, but I did put into the comment boxes that the team including so-called regular temp workers is so large and new staff are oriented so chaotically that I essentially deal with a lot of near-strangers.

Speaking of which, my support coordinator thankfully agreed to another chance at orienting the new staff I mentioned on Saturday. Today, she attended my evening activity and we just chatted in order to get to know one another. I still feel some discomfort around letting her be oriented to my morning routine tomorrow, but agreed to it anyway. The fact that the staff even gave me a choice, shows improvement.

I must say I’m less willing to accept awful care now than I was two years ago. After all, let’s face it, almost no-one in the outside world accepts a random stranger into their house who refuses to leave and demands to do personal care tasks for them. I was forced to do exactly that until a year ago (and on Thursday, but thankfully my support coordinator changed that). In that sense, I wish there were a question on the survey asking me how my care compares to two years ago. I mean, in early 2023 I wrote a pretty cynical post about a day with optimal care. I reread it just now, thinking I’d claimed my care was actually optimal back then. I fully intended to contrast my revised idea of what constitutes “optimal care” now with my screwed view back then. Thankfully, my perception wasn’t as screwed in 2023 as I thought it was. In fact, I said pretty much the exact same thing I said on the questionnaire today: the framework is okay, but the practical reality isn’t. I do feel my reality is better though than it was then.

March Memories

Posted on by Astrid

Hi all! Can you believe we’re already halfway through March? I honestly feel that time flies. Today, I want to share some random memories from Marches (is that a word?) gone by.

First, a year ago, I had just recovered from second-degree burns that I sustained in a crisis. Looking back, my life is much better now than it was a year ago, when we were in the midst of a weird idea from the staff that said I had to compensate for every minute I needed support outside of my designated one-on-one hours because of distress. I sort of understand the reasoning, because, at the end of February, I had shared with my behavior specialist and some therapists that, in an ideal world, I’d be able to rely on staff all the time. What I didn’t realize at the time, thanks to all the words about “unsupported time” in my day schedule, is that this is basically already the situation in 24-hour care. Of course, I can’t always expect a staff to show up in no time when I need one, but it isn’t like I’m ever truly supposed to be self-reliant. That’s until that crazy idea about compensating came to be, because, as one of my staff said it, my “unsupported time” was supposedly my structure. Let’s just say I disagree and am so happy that, after a month, the system was abandoned at the end of March again. Now, it’s actually in my day schedule that I can rely on the staff for support when in distress during my times of doing my activities by myself.

Two years ago, I finally had a meeting to discuss my leaving the intensive support home. I’m so very happy I insisted. I remember the intensive support home’s behavior specialist was a bit critical, because, well, I apparently hadn’t left the care facility in Raalte in 2022 completely voluntarily. As it turned out, some staff had been more happy that I’d finally gone than they had admitted. This is somewhat understandable, given that all other clients there had severe to profound intellectual disability and no or minimal challenging behavior.

I can’t believe I’ve been at my current home for eighteen months already. As I share these two snippets, one from 2024 and the other from 2023, I am intensely grateful. I am still struggling at times, but then again I was even at the best of times in Raalte.

Sharing this post with RDP, for which the prompt today is “March”.

Worries

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is about worries. What worries you about the future?

Unlike Sadje, I mostly have personal worries occupying my mind. Most of them also aren’t long-term. I mean, I do sometimes worry that the sweet and high-fat foods I consume today will lead to an untimely death ten or twenty years from now, but that worry isn’t as all-consuming as my worries about the next few weeks, months or the next year. I joke that, in 2034, everything will be okay. I got that from the book titled 2034, which I still haven’t read and is about World War III erupting that same year. I think it’s more likely that World War III is going to break out that year than that the care system will be any closer to ideal. However, in reality, I can’t look that far into the future, so I know I should care, but really I don’t.

This is probably the same reason the state of the planet doesn’t keep me up at night. That is, except when I read a news article detailing that the magical 1.5 degrees of warming have been hit in some parts of the world in 2023. Then I did worry: will the planet catch fire (not even sure whether I’m talking hyperbolically with all the wildfires we’ve had) next year?

Still, most of my worries concern my personal life. That doesn’t mean the news doesn’t effect me, but it only does when I think it relates to me personally. For instance, when I read that policy makers were talking about reintroducing 24-hour diapering for elderly people who can still use the bathroom but need assistance with it, I was intensely worried. It was said in the same article that the phrase I repeat many times over and over again when talking about my care was: “It’s better to have reasonably good care for two people than excellent care for one person.” Did they mean me? Was my care, with (at the time) nine hours of one-on-one a day, “excellent”? Apparently, because now I have just seven. But I’m still worried they mean me. After all, I still cost considerable money (far more than elderly people needing an hourly assisted bathroom break) and aren’t sedatives cheaper than one-on-one, just like diapers are cheaper than nursing assistants?

It isn’t really a clear thing I do worry about though. I mean, yes, I do worry about my care being cut, but then again, I can’t look far into the future. When I try, I’m always wrong on so many levels. So they remain mostly vague worries that keep me up at night.

Sometimes though, like recently, they’ve been more short-term, concrete things that worried me, such as over the past week the fact that my support coordinator, behavior specialist and intellectual disability physician had a meeting on Friday. The positive news is that the explicit compensatory system, by which every minute I’d come out of my unsupported time in distress had to be compensated for at my next one-on-one moment, was discontinued. Rather, from now on, staff will again discuss with me once I’m calm whether they can come back at a later time for my next support moment since they needed to spend more time on me. I am so happy I no longer have the compensatory system hanging over my head, even though some staff said the end result would be the same. I don’t care about the end result (which, by the way, will probably mean I’ll need slightly less support, honestly); I care that this makes me feel much more comfortable.

The Wednesday Hodgepodge (January 3, 2024)

Posted on by Astrid

Hi everyone. It’s Wednesday, so I’m back joining the Wednesday Hodgepodge. I love this week’s questions, even though I’m pretty sure most came along during the first Hodgepodge of 2023 too. Here goes.

1. Every January 1st since 1976 Lake Superior University has published a list of words they’d like to see banished from the Queen’s English. Words may be banished due to misuse, overuse or just general uselessness. Here are the words/phrases they’d like to see banished in 2024-
hack, impact, at the end of the day, rizz, slay, iconic, cringe worthy, obsessed, side hustle, wait for it
Which of these words/phrases would you most like to see banished from everyday speech and why? Are any of these a regular part of your speech? Is there a word not on the list that you’d like to add?
I don’t care for the term “side hustle”. Other than that, I don’t really think any of these words/phrases are particularly cringe worthy (pun intended). I do use “at the end of the day”, but not any others out of this list. That doesn’t mean I don’t misuse or overuse words a lot. Think “particularly” above.

2. What do you wish you’d done more of last year? Less of?
More of: writing, both on my blog and in my journal.
Less of: worrying.

3. A place you’d like to visit in this new year? Do you think you will?
I really don’t know. I have no travel plans and actually don’t care for vacations.

4. What are three words to sum up or describe your 2023?
Emotional, stressful, hopeful.

5. What advice would you like to give yourself as we begin a new year?
Be open to the possibilities that come your way.

6. Insert your own random thought here.
I have been trying out the WordPress block editor, because I wanted to participate in #Bloganuary. So far, it’s still quite the learning curve and I’m happy the classic editor is still available. In fact, I doubt I’ll move over to the block editor full-time anytime unless I’m forced to. However, I’m glad the two posts I wrote using the block editor haven’t been ruined (yet) or disappeared altogether, like happened to some I did several years ago.

2023: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year. I am dealing with a nasty cold and very much overloaded by the early fireworks. I really expected the institution town to be quiet, but it isn’t. Regardless, my sense of duty is stronger than my wish to crawl into bed with a PRN tranquilizer and that sense of duty tells me I need to review the past year. So here goes.

I started out 2023 cautiously optimistic. I mean, I admitted in my hopes for 2023 that my day schedule, though better than the one my then support coordinator had given me, was far from ideal. In the months that followed, it would turn out that “far from ideal” was really a euphemism and that the intensive support home wasn’t suitable for me. I know my staff there blame my critical attitude, but honestly my current day schedule is pretty much ideal and, moreover, at least my staff try to think in terms of validating my needs rather than fueling competition for care.

By late January, I had pretty much decided I didn’t feel I could live in the intensive support home long-term, but it took till mid-March for a meeting to formally make the decision to start moving plans again. Then I waited two months before hearing any steps had been taken, then another two before that awesome E-mail from my now assigned staff to my mother-in-law asking what color of paint I wanted on my wall.

In the meantime, I didn’t sit still, though sometimes it felt like it. I indeed wasn’t as active as I was during 2022. I participated in the April #AtoZChallenge on my blog, which was really my only active month this year.

I also helped set up swimming for the intensive support home. After all, the idea to ask the institution pool whether they had a time slot for me and a staff to try out swimming, came from me, and then it turned out this time slot wasn’t available just once, but each week.

For the most part though, over the spring and summer, I struggled. It didn’t help that my support staff came up with the conclusion that I got more one-on-one support than I was getting funding for. This led to regular arguments with my former staff about how to cut those hours once I moved.

When I actually moved and my hours had to be cut, the staff soon enough figured out that this wasn’t a viable situation. Thankfully, I got my hours back, first through my care agency and then through funding from the Care Office.

Once this had been sorted, my life significantly improved. For one thing, I was spending more time creating things out of polymer clay. I also explored other activities, such as baking.

In the health department, 2023 was a mixed bag. I did reach my goal of getting to a healthy BMI, but over the past couple of months I have been struggling to get in the movement needed to meet my activity goals. That is, I haven’t met my movement goals several times this past month. One reason is the weather and the fact that, now that I’m at my current care home, I cannot (yet) go swimming regularly. Another factor though may be the fact that I’ve lost weight and haven’t adjusted my movement goal accordingly. Still another factor may be laziness though.

Lastly, 2023 was the year I left Christianity for good. I mean, I’m still spiritual, but I don’t care for a God that condemns the vast majority of people to eternal suffering, many of whom simply for being themselves.

December 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. I’m early sharing my end-of-the-month reflections, because I’ll share a review of the entire year tomorrow or on Sunday and I just now felt inspired to write. As usual, I’m linking up with #WBOYC.

The month started out pretty good with my new, pretty much ideal day schedule having taken effect. I did worry slightly that it’d be taken away if I didn’t spend my every two-hour activity time slot in the afternoon actually working with polymer clay or doing some other long activity. Thankfully, so far, it’s not been changed.

Also early in the month, I started acting out a bit because I got assigned a temp worker due to a staffing rearrangement. I started constantly comparing myself to a client who doesn’t need to deal with temp workers. Finally though, I calmed down and asked my assigned staff to write in my signaling plan that staff focus on validating my feelings and needs rather than feeding my comparison trap.

In mid-December, I went on the lights tour (I called it “Christmas lights tour”, but it wasn’t actually specifically Christmassy) around town. I loved it but had to agree with the staff that going without my one-on-one wouldn’t have been an option.

Christmas itself was okay but overwhelming. My spouse and I spent Christmas day at my parents’, where my sister and her family were too. Dinner was a lot better than I expected. However, both my spouse and I were overwhelmed by my nieces and my spouse might’ve contracted whatever illness my sister was carrying (COVID, possibly).

We spent the afternoon after Christmas at my in-laws having a Christmassy lunch. I went for an hour-long walk with my mother-in-law that day.

Like I mentioned last week, the storm last week caused one of my institution staff to be hit by a falling tree. She unfortunately died. This was quite a scary experience to many people here, so I for one at least hardly went for walks all week. I finally found out how to check for weather warnings today, so was able to go on a walk (two, in fact) again. Thankfully, the areas with lots of trees now cannot be entered anyway.

I have been slightly more creative than I used to be over the past month. Stilll not as creative as I’d like to be, but I’m getting better. Projects included another polymer clay unicorn, a butterfly and a pineapple charm. Also a dolphin which hardly anyone sees as a dolphin. The worst insult it’s gotten is that it’s a mouse.

Polymer Clay Dolphin

In the health department, I did okay. I did gain 2kg over this past month, all within the last two weeks. However, I am still within the weight range I agreed upon with my dietitian and on the upper end of a healthy BMI. I did resolve to lose those 2kg eventually though, but it doesn’t have to be in two weeks.

I do have some pain in my lower abdomen. No UTI and a bladder scan was normal too. I guess that’s a positive thing.

Another positive thing, which I almost forgot to mention, is the fact that my one-on-one got renewed. Not just that, but the hours the agency had asked for, were granted. This means my care for now will definitely not be decreased, like I had feared. After all, until the renewal, the agency was paying for some hours itself and that couldn’t have lasted. Thankfully, the Care Office granted the full number of hours requested.

November 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the end of November, so I am joining #WBOYC and reflecting on the past month. Can you believe we’re almost in 2024? Ten more years and everything will be okay, as I always say (or WWIII will be started, as the book I used for inspiration for that claim says). Anyway, let’s wrap up November.

It started with the meeting on how I’ve been adjusting to my current care home on November 6. This meeting went okay. At first, I was a bit disappointed in my assigned staff’s attitude. I honestly still am to an extent. However, I’m trying to believe the staff are doing their best to help me.

The new application for one-on-one support was sent out the following week. I only heard some superficial bits and pieces of what went onto it, so I’m still very much stressed out about the possible outcome. It doesn’t help that my now old day schedule was used as a reference to base my necessary hours upon, which I’m pretty sure the Care Office are going to be very critical of, as was I.

Thankfully, at least for another 31 days, I’ll now have my revised day schedule. It started on Monday and I’m thrilled about it. Please, all pray or send out positive vibes or whatever you do for the necessary one-on-one to be approved for next year too.

I also worked on my crisis signaling plan with my assigned staff. This led to a major surprise, and not a good one: it turned out my original support coordinator from the intensive support home had significantly changed my plan without my knowledge or consent. I knew right as my assigned staff read me what staff are supposed to do when I’m asleep (the first phase talked about in the plan) during the day, ie. let me sleep and wait for me to leave my room rather than check on me periodically. Since my former support coordinator hadn’t altered the date and names of the people writing the plan, it still looked as though my staff from the care home in Raalte had written it though. I however was adamant that this was not the plan I’d agreed upon.

My assigned staff initially tried to dissuade me from focusing on this and seemed to disbelieve me, until I went and fetched the manila folder I had with my old day schedule and, yep, my old plan from Raalte. He tried to tell me they looked similar, but this was only when referring to the signs of the different phases, not the staff’s expected actions.

Unfortunately, my old support coordinator no longer works for this care agency, or I’d have filed a complaint against her. Oh well, my current assigned staff erased the evidence by editing the name and date to his and November 2023 and saving the document, after we’d indeed worked some on it. I am honestly extremely mistrusting of everyone here now that I know of this. I mean, all staff say that this home isn’t the intensive support home, but how do I know it’s different?

In the creative department, I haven’t really been as active as I’d have liked, but I did okay. I crafted a gnome out of polymer clay and most recently a Santa, both without the use of a tutorial. I also wrote some creative pieces, which I intend to do more of in December and in the new year.

Health-wise, I wasn’t as good to myself as I could’ve been. I really snacked far too much. The thing is, I still didn’t gain any weight, and am currently at the lowest point I agreed upon with my dietitian, weighing 56kg. It wasn’t that I over-exercised either, as I didn’t meet my movement goal on my Apple Watch several times this past month (and my movement goal is only 300 active calories, so you know).

I finally did get my support coordinator’s attention re the possibility that I might be experiencing cognitive decline. She’s going to ask the behavior specialist for some screening instruments for self-help skills or whatever. Sadly, these haven’t been administered to me before, so this is going to be my baseline really.

October 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means I’m reflecting on the past month’s happenings. As usual, I’m joining in with What’s Been On Your Calendar? (#WBOYC).

First, I’m finally going to share the polymer clay unicorn I crafted on September 30. Okay, that’s not technically the past month, but I didn’t fully finish it and take a picture till October 5.

My spouse joked that, judging by its colors – fuchsia, yellow and blue (the blue is called Peppermint, don’t ask me why) -, it’s typical of a specific music scene from the nineties. The staff who helped me craft this unicorn, is only slightly older than me, so she understood.

I haven’t really been crafting with clay much over the month of October. I did though help cook dinner twice. I also made a few smoothies.

I also did a good amount of walking, although I didn’t meet my movement goal every single day this month. I blame the rain, because the one day I didn’t meet the goal, it was raining almost constantly. Besides walking, I went swimming once.

My mother-in-law visited me three times this month and my spouse came by each week. My sister had originally wanted to come by this Sunday, but I prefer not to see her or my parents in the institution. Instead, my spouse and I are going to see them and my parents at Christmas.

Mental health-wise, the month has been quite good, truthfully. I mean, I’m still adjusting to my new care home and it’s October, which is a hard month for me each year. Taking this into consideration, however, I can’t complain. I am intensely grateful for the fact that most staff go out of their way to accommodate me. Initially, I was told by some that I’d be assigned the temp worker almost by default, which set me off because that was exactly what happened at my old care home and, given my attachment issues, I struggle with this. I spiraled into a bad crisis for this reason last week. Thankfully though, the staff now try their best to assign at least a somewhat familiar staff to me if they have to be a temp worker after all.

With respect to my physical health, I am happy to report I didn’t lose any more weight. In fact, I gained a few pounds. It wasn’t like I definitely couldn’t lose any more weight for my health, but I would’ve felt concerned had I lost more weight, given how much I ate over the past month. I am now within the weight range I agreed upon with my dietitian rather than slightly below it, so I’ve decided I can no longer afford as many treats as I used to consume. Yesterday, I convinced my assigned staff to add my food plan to the manila folder of important information that’s on my table in my room. After all, staff would often hand me a cookie (or two) without even thinking about it with each coffee break, despite the fact that my food plan has one only with my evening coffee break. I am due for weigh-in tomorrow morning again. Fingers crossed I won’t have gained significantly.

September 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. September was a true rollercoaster of a month. Let me share. I am joining in with What’s Been On Your Calendar? (#WBOYC).

The month started with me being notified by my support coordinator for my now old home that I’d be moving to my current care home on the 18th of the month. The boxes arrived the next Friday and I started packing. I had a visit at my new care home on the 15th, which my mother-in-law also attended. The new staff seemed nice, but I did feel overloaded having coffee in the living room.

My move went about as chaotically as could be. For one thing, institution transport weren’t available that day, so my old support coordinator had to move most of my stuff, the rest to be moved the next day. For another, the staff here at my new home weren’t prepared with an extra staff member when I moved, so my old home’s staff had to help me get settled.

Handover also went rather frustratingly, so I was happy when my old home staff pulled away after a day. Only then began the trouble with my day schedule. I had been informed by my old home’s behavior specialist that the intention was to keep my day schedule mostly the same as at my old care home while I adjusted. This wasn’t to be. In the first week, at least three adjustments were made to my day schedule, all cutting my hours, and several more changes were not put on paper but were implemented in practice. The most frustrating changes took place in the early afternoon, including a 60-minute group activity time slot. I tried to make it work, but was often too easily overloaded, leading to extreme irritability throughout the day.

Thankfully, yesterday my assigned staff, after talking to the manager, informed me that I would be allowed a one-on-one activity time slot during the early afternoon for now anyway, during which I can do something creative. We’ll have to see how this all works out once my one-on-one has to be renewed in November.

Today, in an attempt to celebrate my time to spend doing crafty activities, I created my first polymer clay unicorn while at this home. I would’ve been able to finish it within said activity time slot had we not also been looking at recipes for baking and put my laundry in the washing machine. Thankfully, my one-on-one staff for this activity time slot was able to come back at a later time and finish the unicorn with me.

Overall, like I said, this month was a true rollercoaster with lots of ups and a few deep downs. Things are looking up now though.

August 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month, so it’s time for my monthly reflections. Overall, August was slightly better than July, but it’s still been quite a tough month. Honestly, it’s been quite a tough year so far.

My spouse’s car broke down a few weeks ago, so we weren’t able to see each other each week this past month. Last Sunday, though my spouse did visit me, it was in my mother-in-law’s car. Thankfully, the car has been fixed for now.

My mother-in-law also only visited me once this past month despite there being five Tuesdays in August and her normally visiting me every other Tuesday. On the 1st, she had to work and on the 29th, a new horse was delivered. The story behind her having gotten a new horse is a bit sad, in that one of her horses, Remco, passed away suddenly last month. I mean, he was already crippled, so could only step around a bit, but still his death was unexpected. The new horse is a young mare called Marrit.

Now on to my own life. It’s been boring. I’ve been mostly waiting to find out more about the move. Last Sunday, my support coordinator told me that I’ll move within six weeks, probably sooner. I honestly have mixed feelings about the whole thing. Obviously, I try to remind myself it can’t be worse than here, but what if it isn’t any better either? Will I be expected to magically flourish there just because it’s not this home? I’m hoping, of course, that I will eventually flourish, but this isn’t going to happen magically. Indeed, this requires work, both on my part and on the part of the staff.

I also, like I mentioned yesterday, have had an increase in flashbacks to my childhood trauma. Of course, I could hope this will lessen when (if?) I’m in a calmer environment, but still I’m pretty sure they won’t disappear without support.

In the health department, I’m doing pretty well. I had a meeting with the dietitian yesterday and she asked me not to lose any more weight. I’m not sure how to do this, truthfully, as I’m eating well overall. There’s also this thought at the back of my mind telling me that I could still lose 10kg and be at a healthy BMI. Besides, I still have quite a lot of abdominal fat and watched some YouTube videos a while back that mentioned the dangers of internal obesity. Then again, the dietitian told me there’s very little I can do about this. The YouTube videos tell me otherwise, but then again my healthy voice is telling me (or at least I’m assuming it’s my healthy voice) that following those YouTubers will just lead to extreme restricting, which will probably just cause me to relapse into bulimia. I’m still struggling intensely with all the things diet culture tells me about what to eat and not to eat to preserve my health and, at the same time, my dietitian has one foot right inside diet culture as well. After all, my food plan was a classic weight loss plan up until I reached a healthy BMI. Heck, the very fact that I mention the BMI here shows how much I’m into diet culture. I want to unlearn this, but I’m not sure how.

With respect to other health factors, I’m doing okay. I walk more than I did in July, have been swimming again and went on the stationary bike occasionally. That being said, I do worry about a decline in my mobility. This could be the YouTube videos again, which told me a loss of arm swing could be a sign of overall decline. I have absolutely no idea whether my arm ever swung at all though. That being said, my drop foot seems to be getting worse too.

I did finally get the eczema on my legs treated. I also got a slight infection on the skin of my earlobes, where I had my ears pierced in early July. I’m currently on a course of an antibiotic ointment, so hoping that’ll work.

In the crafty department, I haven’t been very active. I did create a lot of unicorns out of polymer clay, but they were all done using cutters, not sculpted. I intend to paint them and use them as gifts for my fellow residents when leaving this home.

I’m linking up with What’s Been On Your Calendar? (#WBOYC).