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.

Day Four

Posted on by Astrid

Today is day four in my new care home. On day four in the home I moved to last year, I was forcefully “helped” (more like dragged) to my room, left alone for most of the shift and expected to almost completely independently walk around the home because “the more independent you become, the less bothered you’ll feel by us [= staff]”.

By contrast, today, I made my first simple polymer clay creation, a planet charm. I tried my hand at polymer clay at the old care home for the first time after two weeks, but it was discontinued because it took too much time. Then I couldn’t work with polymer clay again until my day schedule was created in December. In other words, I did something today I couldn’t do at my old care home until significant improvements were made.

Should I compare my current experience to the improved experience at my old care home? No, I don’t think so. After all, I’m still adjusting here, something I never did there. Chances are things will improve here too as I learn to adapt or my staff adapt to me or both. I hope so.

Because, to be honest, it’s better than my early days at the old care home, but I’m still struggling significantly. For one thing, my one-on-one, despite what the behavior specialist responsible for my old care home had said, did get cut. It started today and this meant I had to spend a significant amount of the day either in the living room or alone in my room. I am giving it a serious chance of working out, but it’s really hard. Hopefully, I will be able to acknowledge when I turn out to be capable of handling more than I expected and the staff will be able to accommodate me should I not be able to.

My (Second) Favorite September Memory

Posted on by Astrid

Hi everyone. I want to write, but honestly don’t feel like sharing about all the stressors of the last few days in my current care home. Instead, I decided to draw inspiration from Marsha’s 10 on the 10th post again and share one of my favorite September memories. My favorite of all time is of course my wedding date in 2011, but I’ve written tons of posts about that already I believe. So I’m going to share about my other favorite memory. This is only a favorite memory in hindsight, as it was intensely stressful back then. I refer, of course, to my moving into the care facility in Raalte on September 23, 2019.

I arrived in Raalte at around 1PM, which was a bit earlier than I’d agreed on I believe, but the staff who would be showing me round had just arrived. She showed me my room and let my spouse move my furniture into it. I remember we had some discussions about things that had to be agreed upon. My spouse clearly stated that I couldn’t manage my own meds, as I’d taken two med overdoses when living in our house. The staff had been kind enough to mark the door handles of my room and the living room with tape, so that I could recognize them by touch when wall-trailing.

I also got a short tour of the day center, that is, the group I’d be attending. I remember they had a hand-made banner with “Welcome, Astrid!” on it. The guy who came here in crisis last November also got a welcome banner, but I got nothing when I got here.

In the evening, when the other clients got home from the day center, we had dinner. After that, one of the staff said she was going for a walk with one of my fellow clients. I was tempted to ask whether I could join them, but can’t remember whether I did.

I remember feeling quite a bit in shock when first coming to this care home. I asked my spouse: “You don’t think it’s all stupid, do you?” I referred to the fact that the other residents were severely intellectually disabled. Maybe I’d also noticed the poo smell. This was one of the first things my spouse asked me about when I went to have a look around my current care home. Truthfully though, I don’t care about poo smell if I get proper care.

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.

Trying to Live a Balanced Life

Posted on by Astrid

This week’s topic for Tranquil Thursday is balance. Maggie’s first question is about work/life balance. Since I don’t work and never have, I can’t speak to that. However, it made me think of the ways in which I need to create a balanced life in general.

I don’t currently have formal day activities. Of course, I have four hour-long activity slots a day, but I can spend them pretty much however I please and sometimes (most times, actually) I feel so uncomfortable with the staff assigned to me that we can’t do more than play a simple card game. I do feel I need to find a balance in my life between being active and passive.

Active, in this sense, does not necessarily mean exercising, although that too needs to happen. I probably don’t need to worry about being extremely sedentary. I fell pretty badly yesterday and still I managed to meet my movement goal on my Apple Watch today. Okay, my goal is just set to 300 active calories, but that’s so that it’s within easy reach even on bad days like today.

What I do mean by being more active is engaging more in stimulating activities such as crafting, food prep such as smoothie making, etc. I also intend to be more active where it comes to actually learning about these topics. I mean, I love copying recipes and experimenting just a tiny bit, but it’d be great if I knew about the science behind them. For this reason, I just downloaded a book off Bookshare on the fragrance aspects of essential oils. How great would it be if I could create my own blends rather than relying on some shady subscription website.

This doesn’t mean I need to be active mentally or physically all day. It’s about balance, after all. I also need to rest. But currently, I feel my life is a bit too much “on hold” for my liking.

Another way in which I need to find balance, which Maggie didn’t ask about, is health. Last week, I agreed with the dietitian on a weight range I need to stay in to maintain a healthy (or near-healthy) BMI and not go overboard with my weight loss. As long as I stay within this range, I am in control of my eating habits. I do need to make sure I don’t slip back into my bulimic tendencies though. I will see the dietitian again in mid-June and will ask her to continue check-ins with me, although they don’t need to be monthly anymore I think. Over the past few weeks, I gained a little weight, but I’m still within the agreed upon range, though I do notice I’m having “cheat” foods more regularly than I’m probably supposed to.

Another question Maggie asked is about your life pie. This is a drawing of a pie divided into six slices for each area of life. You then put dots in each slice to see how well you do in each area and connect them to see which area is relatively unfulfilled. This is a visual exercise, of course, which I can’t do, but it did make me think. My life is most fulfilled in the area of exercise and least, unless you count work (but that’s by societal standards only), in the areas of friends and play. That last one might surprise my staff, as I play card games on a daily basis. However, what I mean by this is truly being creative.

Work: Employment and Day Activities for People With Intellectual Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter W post in the #AtoZChallenge. Today, I want to discuss work and day activities for people with intellectual or developmental disabilities.

People with a mild intellectual disability and no additional problems can often work paid jobs that would otherwise be performed by typically-developing adolescents, such as filling shelves in a supermarket or being waiters in a restaurant. They may not be able to complete all duties required for these jobs, but in the Dutch system, if you can do a task that is part of a job and have minimal employee skills (such as coming on time, respecting authority, etc.), you are expected to join the mainstream workforce. I, thankfully, have not been judged to meet these criteria, but then again I’m lucky in that I’ve been on disability benefits since 2004. A few years back, I heard of a profoundly and multiply disabled woman at my day center who somehow was judged to meet the criteria. The work specialist had probably never seen her, as they said she could do simple manual labor, while she had severe spastic quadriplegia.

Alternatively, there are sheltered workshops for people who can work, but need to do things at a slower pace and need some more support than can be reasonably expected within the mainstream workforce. However, these workshops have been facing significant budget cuts.

When this, too, isn’t an option, you enter the world of day activities. Those still can be “work-like”. In fact, most day activities for more cognitively capable intellectually disabled people simulate a work environment. Some of these activities are truly meaningless, in that the staff will let clients fill the same boxes with a number of items repeatedly only to empty them again so that the client can fill them once more. I honestly have very strong opinions on this: if it’s truly what a person wants and there’s no way of making the activity actually meaningful, I’m fine with it. Otherwise, I don’t see why day activities need to be “work” and things like crafting or music can’t be day activities for more cognitively capable individuals.

For more severely disabled individuals, day activities are usually sensorially-based. This includes snoezelen®, which is being in a room where the sensory environment can be completely controlled to suit the individual’s needs. I actually love this, although only for about 30 minutes at a time.

Other activities include cooking and baking, with which the clients usually don’t really help (although some moderately disabled people can) but will experience the sensory stimuli associated with the process. For example, I used to attend a group for profoundly disabled individuals and, when we’d bake something with apples in it, the staff would massage the clients’ arms with an apple. Music, story time, and simple crafts are also common activities for this population.

I, personally, if I had to choose a day activities setting, would choose the one for more severely disabled people. I know I can’t really function in a group setting, which is why I’m stuck at the care home for now, but I honestly have zero interest in meaningless labor.

#WeekendCoffeeShare (February 25, 2023)

Posted on by Astrid

Hi everyone on this last Saturday of February. Can you believe we’ll be rolling into March this coming Wednesday already? I definitely can’t!

I’m joining #WeekendCoffeeShare today. I just had dinner, but probably won’t finish writing this post until after my evening coffee at 7PM, since it’s 5:45 and I have one-on-one for an hour in about fifteen minutes. I’m reminded, as I type this, that the other clients’ evening coffee got moved to 7:30, so I’m afraid you’ll have to be content with a Senseo coffee (and so do I). Let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking about your weather, as usual. Ours has been mostly cloudy with some drizzling, but today it’s been sunny at least during the afternoon. Daytime temperatures rose to between 7°C (today, the coldest day of the week) and 11°C earlier in the week.

If we were having coffee, I would tell you that I didn’t do as well with my walking as I’d done last week, but on Tuesday, I did register 124 exercise minutes in a single day, all by walking. It wasn’t a record by any means, but it was the best I’ve done since moving to my current home.

I’m also trying to up my walking speed, because as of this week, I can see my trends on my Apple Watch and this is the downward trend that my Apple Watch claims is the easiest for me to turn around quickly.

If we were having coffee, I’d tell you that I’ve had a pretty good week in the care home overall. So much so, in fact, that, like I said yesterday, I’m not 100% decided I want to leave this home anymore. A lot depends on the outcome of the meeting with the behavior specialist, my support coordinator, assigned staff and mother-in-law next Thursday. In particular, I’m going to inquire about their ideas for me regarding day activities. Ideally, I could work towards going to a day center with part-time one-on-one support. After all, I’d really like to focus on having some actual day structure rather than having “time to rest” (some staff seriously use that term for my unsupported times) every hour at least.

If we were having coffee, I’d share that I asked my assigned support staff to contact the doctor about the burning sensation on my back that I’d mentioned on Wednesday. The way things work here, she had to contact the institution nurse first. The nurse recommended we try some cetomacrogol cream. I think it might indeed be my eczema acting up again. To be honest, the cream isn’t really helping yet though.

If we were having coffee, lastly I would share that my laptop started acting up a little last week, so I ordered a new one. My old one, which I’m still typing this post on, is over 3 1/2 years old and has been used a lot during those years, so really it’s not at fault. The new one has Windows 11 on it, which I’ve been avoiding installing on the old one (assuming it could be installed at all). I really need to look into the differences so that I can familiarize myself with the new operating system before this laptop completely dies. Going to do that now, okay?

How have you been?

TGIF: Optimal Care?

Posted on by Astrid

It’s Friday and this means Paula Light is rambling on in her TGIF post. I don’t join in each week, but today, I’d like to.

Today, I received optimal care as per my current care home’s standards. That is, my day schedule wasn’t disrupted and I had one staff member for the entire shift both morning and evening. My assigned staff says this means I’m lucky. I considered myself lucky this morning indeed, since one of the regular staff was my one-on-one staff while two temp workers were supporting the other clients. My staff for the day explained that one of the temp workers knew the other clients pretty well and he’d never worked with me, so it was decided that he’d do his shift supporting them. This, indeed, does make me feel fortunate.

However, with respect to the day schedule, I still feel that it could be better. And I don’t mean with me receiving quantitively more support. I mean that I’d like longer support times and fewer but longer times without support. I also probably want to work towards going to a day center.

I’m probably going to insist I’ll attend the meeting with the behavior specialist, support coordinator, my assigned staff and my mother-in-law next week. In my opinion, given how it’s been going over the past couple of weeks – better than before -, I’m not dead set on leaving this home as of yet. However, I do need to make sure that there’s going to be at least some room for improvement on the part of my care home. Judging from my staff’s comments, I’m pretty sure there isn’t and in fact they want me to adjust to less and less suitable for me care.

It’s All a Blur

Posted on by Astrid

It’s all a blur, this life of mine. Moments, days, weeks, months – maybe soon years, who knows? – roll into each other. I don’t like it one bit, sorry not sorry.

I may not be able to fully lay the blame on my current care home with its chaotic and yet oh so boring routine and no day activities whatsoever. I might be able to create my own routine that would somehow differentiate between mornings and evenings, weekdays and weekends, summer and winter. If only I knew how.

This post was written for this week’s Six Sentence Stories link-up, for which the prompt word is “blur”.

Solo: Making the Most of My Alone Time

Posted on by Astrid

Today’s prompt for #JusJoJan is “solo”. It has many meanings, but the overarching one is “alone”. For this reason, I thought I’d use this as an opportunity to write about ways to make the most out of my alone time.

You see, I don’t really do well with alone time. It makes me anxious. At the same time, I need alone time. It helps me recharge. How can these two coexist, you might wonder. Honestly, I’m not quite sure.

However, the more important question is, how can I make sure the recharging effect gets the upper hand rather than my anxiety? The key to this is making the most out of my time alone.

In my old day schedule, I had random slots of alone time that could last anywhere between 15 and 60 minutes, sometimes longer if I didn’t come out of my room to alert the staff. This caused intense anxiety, because I never knew when I’d have time alone and, when I did, how long it’d last. This meant I didn’t know what activities to do during my alone time.

Now though, I usually have time slots of 30 to occasionally 45 minutes alone. In all honesty, I think the 30-minute time slots could be lengthened to 45 minutes if they could be decreased in number and by extension my time slots of activity lengthened too. This isn’t likely possible at my current care home though.

During the time of my old day schedule, I used to feel stressed when alone and as a result use up the time by wandering around my apartment. Now I occasionally still do this, but I try to put each moment of alone time to good use. For example, Bible study and blogging are things I can’t do when a staff person is in the room. I do these when I have alone time, but sometimes I struggle to finish them off during my 30-minute solo time slots. At the same time, I struggle to find meaningful activities that I can do within my 60-minute time slots (which are usually cut short) of one-to-one support. Part of the reason is my need to get into a routine – for example, of gathering my polymer clay supplies. Part of it is the fact that some staff start out by proposing a certain activity, which makes it hard for me to switch to wanting something else. And part of it is probably my mindset too, in that I get overwhelmed with not knowing how long an activity will take and thinking I “only” have this amount of time. This applies to alone time too.

I often say that, in an ideal world, I’d have one-on-one all the time. This isn’t true. In an ideal world, I’d have good chunks of alone time with staff only popping in once every 45 minutes (because otherwise I’d lose track of time), so essentially no extra care then, during later evenings and part of the weekend. I’d also have good chunks of supported activity during the day. Oh wait, that’s pretty much how I had it in Raalte and I was going to let go of comparisons with old homes. No, wait again, my day schedule back there wasn’t ideal either. But it allowed for longer chunks of activity time during weekdays and that’s really what I dream of.