Things I Appreciate About My Current Care Home and the Care I Get

Posted on by Astrid

Hi everyone. I tend to lean towards pessimism about life in general and my care is no exception. However, I do feel that there are definitely positives about my current care home and the care I get. This evening, I’m struggling a bit with mistrust. It’s sometimes hard to realize that my staff truly want the best for me, but they do. For this reason, I’m using this post as an opportunity to share the things I appreciate about my care home and the care I receive.

1. My room. When moving here from the intensive support home, I was cautioned that my living space would be much smaller here. It is, but this I see as a positive rather than a negative. I only have one room as opposed to a separate living room and bedroom, but this means I can actually find all my belongings in one place. My room is large enough for all my stuff and this was something I hadn’t expected.

2. The lawn/yard adjacent to my room. I have a little terrace that I have a table and two chairs on, as well as a large lawn. I share it with the resident in the room next door, but she doesn’t use it at all.

3. The fact that I could choose the color for one of my walls. Okay, they didn’t have my favorite color, lilac, but I can’t see it anyway and my spouse, who can, thinks pink is much better.

4. My one-on-one support. It’s not perfect, but it’s as good as can be given the current circumstances. I have enough time for day activities.

5. The fact that staff don’t push me to be more independent than I can be. I had a pretty bad experience with this at the intensive support home. For example, staff would ask me why I was independent enough to climb over my fence during an outburst but not independent enough to tell the shampoo and shower gel apart when showering. As if these two are in any way similar! And even if they were, I’m autistic and struggle massively with executive dysfunction, as well as my energy level varying significantly from day to day.

6. The fact that the female support coordinator makes most decisions for me rather than the male one even though she is actually responsible for the other side of the home. I have had some issues with the male one, who isn’t the most socially adept, and I’m so glad they were able to make a working arrangement.

7. The fact that I get female staff for my personal care all the time. I’ve always made it very clear that I don’t feel comfortable with males helping me with this. However, at the intensive support home, I was often told I either could accept the male staff or figure out a way to do said task independently, even when there were female staff available.

8. The fact that staff have agreed not to assign me unfamiliar temp workers unless absolutely necessary. At least, that’s how most staff have explained it to me. The male support coordinator corrected me when I said I’m happy that as a general rule I won’t get unfamiliar temp workers, so now I’m not sure whether I was too optimistic. It’s still early days too, but I’m trying to be grateful.

9. My two assigned staff. Both are female, one being in her sixties and quite experienced and the other a young student staff who however has a lot of knowledge. They both have my best interest in mind.

10. My signaling plan. A signaling plan is a plan that details the various phases of alertness or emotional stability in order for everyone to help the client prevent emotional outbursts or other states of over- or under-alertness. My support coordinator at the intensive support home had herself changed mine without my knowledge or consent. Thankfully, I was able to retrieve the one I had in Raalte and we were able to build a new plan based off that.

11. The fact that, if I have concerns, I can E-mail my assigned staff and support coordinator and they’ll take my concerns seriously.

12. The fact that my fellow clients are a lot less disruptive than the ones at the intensive support home. I still experience overload from the sounds my fellow residents make at times, but it’s manageable.

13. The fact that I won’t be kicked out of here. I’m not entirely convinced of this yet – no, scratch that, I’m not convinced of it at all -, but at least so far my staff are saying they’re happy I’m here.

I’m linking this post up with Thursday Thirteen.

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.

I Am My First Priority: Intentions for Focusing on My Quality of Life

Posted on by Astrid

Hi everyone. I paged through The Goddess Journaling Workbook again yesterday and saw the first prompt: “I am my first priority”. Okay, I did write about it already back in 2020, but I think I need to revisit it and set intentions for putting myself first. I know, we are often taught, especially in more conservative circles, that we need to put others first (or after Jesus, but ourselves last, in any case). Then some more leftist folks teach us about self-love as if it’s about essential oils and vegan smoothies. Which it could be, but this is not what I mean. Rather, self-love means being true to our own values over those imposed upon us by others. And that doesn’t need to be selfish.

Now of course I need to determine my values. I’ll narrow those down to what my major point is for being in care, ie. my main goal. This is quality of life. This may be obvious to most people who aren’t involved in the care system and it should be obvious to those who are too, but for many, the presumption of competence or the need to manage daily crisis behavior clouds their vision towards quality of life. In fact, I’ve even seen one care agency state that their aim is to “maintain and where possible promote” quality of life in their clients. Well, this is wording I’d expect to go with “independence”, not “quality of life”, since truthfully, quality of life can always be promoted.

So what does quality of life mean to me? It means that I decide what I spend my limited energy on. This doesn’t mean lazing around all day doing nothing and it doesn’t mean I won’t ever improve on my ADLs at all either. What it means is that I take the lead, focusing on my daily level of energy. I told one of my staff the other day that I would prefer if she doesn’t tell me to do something independently, but rather invites me by asking me whether I want to do it independently. In that case, she’s much more likely to get me to actually do it, as I don’t feel the pressure of her expectation, because I can say “No” if I don’t have the energy at that point.

It also means that I decide what activities to do during my allocated activity time. In my current care home, I have been sometimes not even consciously adapting to staff’s preferences for activities way more than I feel comfortable with. For instance, I’ve been taken on grocery shopping trips for the staff’s personal needs under the guise of an activity more than a few times. I eventually put a halt to that, saying I would only go if I too needed something from the supermarket. Another, even more frequent, example is my playing endless card or dice games because I’m assigned a new temp worker who comes across like they’re just here to pass the time. Yesterday, I was assigned one of those and had had it with dice and card games, so I thought, screw it, we’re making a smoothie. It turned out absolutely delicious!

It also means being intentional with my unsupported times. This means rather than mindless scrolling, doing actual reading, watching or listening online. I fully intend on blogging or at least journaling more often. If I can stop caring about my stats, maybe I can post here more often based on self-help journaling prompts. I didn’t collect those books for nothing, after all.

It means being constructive in my relations to my staff. It means being honest about my needs. For example, if a staff member (usually a new temp worker) causes me emotional flashbacks with something they do or say, rather than just telling them I feel in distress, I will hopefully be able to ask for a more trusted staff to intervene for a few minutes (which isn’t the same as demanding I be supported by all trusted staff).

Finally, I will also be constructive in contributing to my crisis signaling plan once it is revised at the new care home. My plan dates back to sometime in 2021 I believe and was immediately thrown out by my former support coordinator here because “it doesn’t work at this home”. What “works” here, however, doesn’t work for me, but that doesn’t mean my plan will be fully useable at my new care home. I will try to understand the staff’s perspective when updating the plan, but will still put myself first.

What I’d Put Into a Self-Care Kit

Posted on by Astrid

So I eventually gave up on the #Writ31Days chalenge. I couldn’t cope. It had become too much of a burden. But I still want to write. Today, I am sharing another personal growth-inspired post. I am writing about those things I use to take care of myself. A Dutch blogger posted about using a self-care kit, which is a box with self-care/positive items in it. Here is what I’d put in my self-care kit.

1. My crisis plan. I cannot read print, so I’d have to either type out my plan in Braille, which is too much work, or put a simple reminder on the box lid to read my crisis plan.

2. Stuffed animals. I as well as the inner children love the stuffies! Rainbow/Sofie, the stuffed unicorn we got at our old day activities, is best used for fidgeting. The inner kids prefer our toy sheep. When we’re cold, we prefer the sensory cat, which you can heat in the microwave and then gives off a nice lavender scent.

3. Essential oils and wax melts. I love love love essential oils! I do happen to have some faith in aromatherapy too, even though I know that it’s not scientifically proven. I would still someday like to create my own mmassage products with essential oils, but for now I just diffuse them. I have a box filled with over 20 different oils.

I also love wax melts, althogh my husband often gets a headache from the strong scent. I particularly love fruity and sweet smells.

4. My sensory exercise products. I have an exercise ball, which obviously doesn’t fit into a box, but which I love anyway. My air stepper pad does fit in a box. I’d love to someday get a Flowee spiky mattress too.

5. Soothing music. Nowadays I don’t listen to CDs. I get all my music from Spotify. I have a custom playlist with soothing sounds and peaceful music. I also love a lot of playlists created by Spotify itself.

What would you put into a self-care kit?