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.

The Wednesday HodgePodge (November 29, 2023)

Posted on by Astrid

Hi everyone. It’s been four weeks since I last participated in the Wednesday HodgePodge, so I thought I’d join in again. For those who don’t know what it is, the Wednesday HodgePodge is an opportunity for bloggers to answer a diverse selection of questions. Here goes.

1. Does anybody really know what day it is? Last week we skipped the Hodgepodge and I just assumed this week would find us in December, but nope. Still November. Do you wear a watch? Use a paper calendar or strictly electronic? What’s your favorite hour of the day? Why?
Well, usually I know what day it is without looking it up, but I was confused yesterday too. I told my staff, when she was looking up who would be working today, to look at the 28th. Nope though, it’s the 29th already.

I do wear a watch, ie. my Apple Watch. I bought it primarily for its activity tracking purposes, but honestly now I find myself using it as a timekeeping device too. In fact, my assigned staff at my former home said I’d keep track of staff’s whereabouts by the second. That wasn’t true, but oh well.

My favorite hour of the day is probably 8PM, as that’s when I’m most energetic. I am currently writing this blog post around that time.

2. Tell us something about how you celebrated the Thanksgiving holiday.
I didn’t. It’s not a thing here in the Netherlands. I did want to benefit from Black Friday, which is a thing (of course, since companies benefit from it ultimately), but when ordering something online that day, had forgotten to check the store’s newsletter whether they had any coupon codes.

3. What’s a sound you hate to hear?
Where to even get started? The vacuum cleaner and lawn mower come to mind now as most common sounds I hate, but I am generally very sound sensitive. Oh wait, a particularly annoying sound is people whistling.

4. Where do you not mind waiting?
Uhm, nowhere. I’m not very patient and can’t handle long periods of nothingness.

5. I really wish____________________________________.
That my one-on-one gets approved real soon.

6. Insert your own random thought here.
I’m having a nasty cold. Or maybe it’s COVID, since I didn’t get tested. I doubt it though, since I’m still at roughly the same fitness level I was last week. That is, my cardio fitness level according to my Apple Watch has decreased, but it isn’t like I can no longer go for 45-minute walks.

Sunny Sunday (November 26, 2023)

Posted on by Astrid

Hi everyone. Today I’m feeling all over the place. It’s been like this for most of the week. I’ve been struggling with lots of unfamiliar staff sent out to do my support and my day schedule being screwed up for various reasons. However, I’m going to focus on the positive. I’m joining in with Sunny Sunday. Like Leigha, I am going to focus on the things I’m grateful for, from the general to the specific. I am using Maslow’s hierarchy of needs as a guide.

1. Physiological needs: Food. Particularly, the fact that we had French fries yesterday (oh wait, that’s not a need). My relatively good physical health. A roof over my head.

2. Safety needs: my financial security. The fact that my staff did try to get me a familiar staff person for my one-on-one at least part of the time (although it was after I’d had an outburst).

3. Love and belonging needs: my spouse, who phoned me this evening despite having a headache. A visit from my mother-in-law on Tuesday.

4. Esteem needs: my new day schedule, which will take effet tomorrow, giving me more time to engage in activities I enjoy. Well, technically it’s not more time in total, but the day schedule is less cut up into small parts, so I’ll have a larger time slot in the afternoon for something like polymer clay.

5. Self-actualization needs: renewed motivation for actually doing something creative. It hasn’t yet formed into something concrete, but I’m working on that.

What are you happy about?

#WeekendCoffeeShare (November 18, 2023)

Posted on by Astrid

Hi everyone. I have barely touched the blog lately, but it’s not because I’ve been uninspired. Rather, I’ve mostly been doing other things online. Before I abandon it altogether, I thought I’d write a post though. I’m joining in with #WeekendCoffeeShare. I’ve had my last cup of coffee for the day, but thankfully my assigned staff ordered my favorite soft drink, apple and peach-flavored Dubbelfrisss, so I’ll have that in a bit. If you’d like one too, join me. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been raining all day today and, though we were supposed to have a daytime high of 12°C, I don’t know when that was supposed to have been the case as it’s been around 7°C each time I looked at the weather on my Apple Watch. I haven’t been outside at all. I mean, I can bear the cold, but rain, yuck! I can tolerate it when it starts raining midway through a walk, but when it rains as I leave the house, I usually turn right around. Consequently, I didn’t meet my movement goal on my Apple Watch today at all. In fact, I’m pretty sure I hit an all-time low, but frankly, I don’t care.

The rest of the week, though we had some rain, it wasn’t constantly pouring. Though some days I needed to get out my winter coat, most days the daytime temperature wasn’t too cold either.

If we were having coffee, I’d cheat a little and tell you all about the meeting I had last week with my assigned staff, support coordinator, behavior specialist and my mother-in-law. Okay, who said you can only talk about the past week during a weekend coffee share? Maybe I did. Anyway, the meeting started out with my assigned staff complimenting me on how I do accept men and unfamiliar staff now. This rubbed me the wrong way, as the day prior he’d pretty much given me no choice, so what was I to do? I’ll see tomorrow whether they’ll go the full length and assign me a male staff for my ADLs (which is a big no for me), as then the female staff who normally always assigns me temp workers is working the morning shift with a male temp worker. Said temp worker is familiar with everyone here, but I am honestly quite sure she’s going to assign him to me for my morning routine anyway. Let me just say I’m going to throw a big hissy fit if this happens.

Other than that, the meeting went okay. We talked about my day schedule, which is okay in terms of how many hours of support I get but far from ideal in terms of how it’s cut up into small blocks. Since my ExtraCare (one-on-one) funding hasn’t been approved yet for next year, we’re waiting to see what happens to that to change anything. I’m pretty fearful the Care Office doesn’t consider every single moment the staff spend with me as ExtraCare, as, well, it isn’t, but the manager does. Oh well, we’ll see.

We also talked about my wish to start therapy again for my trauma-related symptoms. Upon further thought, I realized I need to work on stabilizing first before I start EMDR or whatnot. The behavior specialist is going to write an application. I am also going to work with my assigned staff on my signaling plan, which details how I can best be supported during each phase of emotional (dys)regulation.

If we were having coffee, lastly I’d share about my dietitian’s appt on Wednesday. It went pretty well. I am currently at a healthy weight and within the weight range I agreed upon with her. She did finally admit she doesn’t know why I’m not gaining weight when I’m having quite a lot of food in excess of my food plan. I honestly currently have far too many other things on my mind to care about this too. I mean, yes, I’m scared, but I’m scared for a lot of other reasons too.

How have you been?

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.

Hello Monday (October 30, 2023)

Posted on by Astrid

Hi everyone. Oh my, I’ve once again been neglecting my blog. I honestly wouldn’t know why, since over the past few days I’ve felt pretty good. I guess I’ll blame the time of year or something. Anyway, today I’m sharing an update with you all for Hello Monday.

Saturday was a very busy day. It was mostly in a good way, but it still left me feeling overwhelmed. A staff made pancakes for lunch, which were absolutely delish. In the afternoon, I sat down with one of my staff to discuss some of the important life events I want all of my staff to know about. This was intense, as you can imagine.

In the evening, I helped another staff cook macaroni for all of the residents and staff. We started out by cooking the mince, then adding onions, garlic and peppers. We thankfully didn’t have to chop the other vegetables. I turned out to be right about the amount of macaroni we needed. Thankfully, the staff’s estimate had been higher, so we had leftovers rather than not having enough. Unfortunately, neither I nor the staff thought of freezing the leftovers, so I’m afraid they’ve gone to waste.

I had a difficult night with nightmares and interrupted sleep, but it wasn’t as bad as it could’ve been several years ago.

On Sunday, my spouse visited me. We went to Starbucks a second time and, after another caramel frappuccino and a donut for me because the pumpkin spice lattes were sold out, I had to agree that my spouse had been right all along that Starbucks is a waste of our money. I mean, the donut was worse than supermarket ones and truthfully my iced coffee was worse than the one I’d had at McDonald’s several months ago, which had initially made me decide I don’t like iced coffees. However, the problem with that one wasn’t the iced coffee itself but the paper straw. This was an issue now too, of course, but the frappuccino definitely was quite bad.

We also went to Aldi to shop for groceries. I only bought crunchy muesli, since the other things I wanted I’d asked my staff to order from the delivery service.

Sunday evening, of course, it got dark at around 5:30PM already because of the end of daylight saving time. I stayed indoors and watched some TV. We’ll have general elections on November 22, so I watched a humorous political quiz-like program in preparation for it.

Last night, I slept better, thankfully. I went on several walks today. On one of them, I decided to take some fall-themed pictures. The one below was taken a short distance from my care home.

We also visited the petting zoo once again and I took a picture of the guinea pigs.

This evening, I spent my allocated activity time claying with my one-on-one staff for the moment. We both created a flower, though hers looks more like a starfish in shape and due to the colors we used, the center is hardly visible. I usually get some help with my crafting, but this time I loved being able to craft the flower pretty much independently while my staff worked on hers.

The Wednesday HodgePodge (October 25, 2023)

Posted on by Astrid

Hi everyone. It’s been a while since I last posted. The past week has been hard, but I’m feeling better now. I’m joining in with the Wednesday HodgePodge once again. Here we go.

1. October 25th is International Artists Day…do you have a favorite artist? If so tell us who and why.
No, I don’t. I’m blind so can’t appreciate paintings or other means of visual art. As for sculptures, I haven’t touched enough to know much about them.

2. Would you describe yourself as artistic? Elaborate.
No, not really. I mean, I’m creative with words and I love to craft, but I don’t have the slightest idea of what makes a good piece of art.

3. What’s a skill, task, hobby, or job you’ve done so often you now have it ‘down to a fine art’?
I’m not sure what that expression means, but if it means you can do something very well or it takes little effort, nothing.

4. How often do you dine out? Fast food, fine dining, or somewhere in between? Tell us about a less than stellar restaurant experience you’ve had recently (or not so recently if that’s easier).
I rarely dine out these days, but my spouse and I get lunch out each week. I can’t remember any recent negative restaurant experiences. I mean, having iced coffee and cake at Starbucks about a month ago was a bit disappointing.

One experience I’d like to share though, has nothing to do with the restaurant, but with the person I went eating out with. In late August, my assigned staff for my old home invited me out for lunch to say goodbye because of my move. In advance, she mentioned nothing about who would pay, so I assumed we’d each pay our own food. This, I consider already thoughtful of me, since had she not been staff, I’d assumed that her inviting me and not mentioning costs would mean she’d pay. Recently though, my spouse got the monthly care home bill for additional costs such as laundry etc. And guess what? Judging from the amount, I’ve most likely paid for both of our lunches. I’m not going after it, but next time I’m going to make sure I understand up front what I’m going to pay for something special offered to me.

5. Do you celebrate Halloween? To what extent? Are there trick or treaters where you live?
No, I don’t celebrate Halloween. I do like it though. Maybe next year I’ll get some decorations, but this year I didn’t feel like I have the space for any temporary decorations. As you know, I live in an institution, so no trick-or-treaters here.

6. Insert your own random thought here.
I went swimming today. One of the staff stayed half an hour past the end of her shift to be able to support me. And yes, I did ask about having to pay for this myself, since in Raalte a client would have to pay individual support hours for this and the hourly fee is far higher than what a staff earns per hour. The staff told me I won’t need to pay. Swimming was great! There were six of us residents participating. Thankfully, the staff who supported me did ask that the music be turned off. Residents here take turns swimming, so it isn’t like I’ll be able to go each week, but I’ll most likely be able to go swimming another time.

The Wednesday HodgePodge (October 18, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday once again, so time for the Wednesday HodgePodge. Here goes.

1. What’s something small you tend to sweat even though you know you shouldn’t?
Hmmm, I tend to get nervous and frustrated about a lot of things that are probably minor to others, but to say they’re things I “shouldn’t” sweat, feels a bit invalidating. I mean, I could choose the situation where staff randomly switch up who is going to support me and as a result a staff I didn’t expect shows up in my room. This often feels minor to the staff, but honestly I think they don’t know what it’d be like to depend on an almost countless number of random staff for your everyday needs.

2. October 17th is National Pasta Day…do you like pasta? What’s your favorite? Cooked at home or eaten in your favorite Italian restaurant? How often do you make/eat pasta?
I love pasta. My favorite is either penne pesto or macaroni Bolognese. I know, in the U.S. it’s spaghetti Bolognese but even that isn’t originally Italian, as it’s a combo of Naples’ spaghetti and Bolognese sauce. The way I understand it, in Bologna they eat their recipe only with tagliatelle.

I enjoy my pasta mostly home-cooked. At my old care home, we’d get home-cooked meals on weekends, which was awesome. Here, we get meal delivery service meals each day, but I already agreed with one of the staff that I’ll be helping her cook macaroni Bolognese on the 28th.

3. Do you consider yourself a spontaneous person? Explain.
No, not at all. And usually when I try to do something spontaneously, it means I’ve forgotten something else and I end up majorly messing up.

4. Who are some of your heroes? Tell us why.
Do people who are no longer alive count? In that case, my paternal grandmother, of course. Some of the autistic activist pioneers, like Mel Baggs and Cal Montgomery too. I admire their work in standing up for their and all of our rights to an actually meaningful life.

5. Let’s wrap it up with something light…Taylor Swift…are you a fan? On a scale of 1-10 how much so? (1=who’s Taylor?, 10=a true Swiftie, seen her in concert more than once). If you’re a fan what’s your favorite T. Swift song?
Uhm, 2 I guess. I’ve heard of her. I’m not a fan, but it’s not about her. The thing is, I’m not a pop music fan at all. In fact, I rarely listen to music except for soothing instrumental music when trying to fall asleep. I honestly couldn’t name any of Taylor Swift’s songs if I had to.

6. Insert your own random thought here.
I want to give a shout out to the app Be My Eyes and its AI-based image description component Be My AI. Until this was introduced several weeks ago, all we blind people had were Seeing AI, Envision AI and some other apps that did rather generic image descriptions. Be My AI, on the other hand, does a rather detailed description of images. I can’t copy an image description here because for some stupid reason I can’t get it to write its descriptions in English, but let me just say it’s great.

In an Ideal World

Posted on by Astrid

In an ideal world…
I’d get all the care I needed,
From all staff I trusted.

I’d be able to engage
In activities I enjoy-
Crafting, baking, walking, swimming.
Without a care in the world.

I’d live closer to my spouse
If not together.

Sigh…
In an ideal world…

This post was written for Sammi’s Weekend Writing Prompt, which this week is “ideal”. I realize that my dreams for an ideal world are a bit childish and rather self-centered. The piece was based on the thing I at one point told staff at my old home: that, in an ideal world, I’d get one-on-one all day long. This isn’t actually true, since I need alone time to read and blog and phone my spouse, for instance. However, I do feel there are ways in which my care could be improved. Some of them might be realistic, while others fall into the category of “in an ideal world”.

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.