#WeekendCoffeeShare (November 12, 2022)

Hi everyone. It’s once again been a while since I last wrote. Today, I’d like to write a post for #WeekendCoffeeShare. I drink more coffee here at the new care home than I used to and it’s not decaf in the evenings. That’s one thing I don’t mind, although I now realize the caffeine might be contributing to my poor sleep. Like I said a few times before, I’m struggling greatly otherwise too. Let me try to share a bit about this past week. Grab a cup of coffee, cappuccino (we have a milk frother here) or tea if you’d like one and let’s chat.

If we were having coffee, firstly I’d start out with the slightly positive: the weather. Although others – climate activists – would see this as a negative (and I understand why), I am so relieved we have relatively mild fall weather here. Daytime temperatures rose to a maximum of between 12 and 17°C over the past week and we didn’t get much rain.

If we were having coffee, then I’d share about the negatives, the list of which starts with my day schedule. I requested one because, otherwise, staff would give me one-on-one support whenever they so wished. However, as it turned out, the day schedule was so vague that staff could still interpret it however they wanted to.

For instance, some staff had gotten it in their heads that, between each activity, regardless of how long that activity took, they’d need to leave me alone for 30 minutes. I said sarcastically that I’d have to think of activities that lasted two hours then, but the last staff who openly told me this about the 30 minutes between each activity didn’t get my point and said an activity could take 30 minutes or whatever too. For clarity’s sake, I have unlearned to initiate activities that take longer than 30 minutes myself because I know staff will usually tell me they don’t have the time, even though I got 90 minutes of uninterrupted one-on-one from my old home’s staff each weekday morning and two hours each weekday afternoon.

Like you may guess, my day schedule is organized around activities, not timeframes. I understand this if you want to put into it specific activities such as “walking” and can’t be sure how long each walk will take. That’s why my old home had “supported activity” in my day schedule. However, it appears as though my staff here want to be able to decide on a daily basis how much one-on-one support to offer me and usually this is not dependent on my need for it, or even on my fellow residents’ daily care needs. Not that those should matter, since my one-on-one is *my* one-on-one, not my fellow residents’. However, it’s about 90% dependent on staff qualities: whether they smoke, whether they’d rather do stuff on their phone or chill out with coworkers than help clients, whether they can or want to set boundaries on my fellow residents’ demands, etc.

As a result of all this, I tore up my day schedule on Monday and life hasn’t been worse since.

If we were having coffee, lastly I’d share it’s my husband’s birthday today. He doesn’t celebrate it or so he told me, but he will be coming here for a visit tomorrow.

How have you been?

The Wednesday HodgePodge (November 2, 2022)

Hi everyone. Wow, I don’t think I’ve gone this long without blogging since I started this blog! Over the past week and a half, I didn’t have much to share except for how depressing and frustrating my new care home situation was, something I don’t really want to bother you all with. It seems it might be improving slightly, so I’m back on the blog. I don’t really want to share details though, so instead I’m joining in with the Wednesday HodgePodge. Here goes.

1. What about your upbringing are you most grateful for?
Hmmm, this is a hard one, since I endured quite a lot of childhood trauma. I’m going to say the fact that my parents, particularly my father, taught me a lot of academic skills.

2. What are two or three things that bring you comfort?
Essential oils, my weighted blanket, soothing music.

3. Something beautiful you saw today? (or yesterday depending on when it is you’re answering this question)
I am blind, so I don’t technically see anything, but something beautiful I got to experience today was to feel a cosmea flower.

4. Have you ever used a typewriter? Tell us a memory associated with that.
Yes I have. In the fourth grade, I started learning to touch type and we started out on a typewriter even though computers existed back then (1995). The reasoning was, or so I remember, that you can’t correct typeos on a typewriter. I hated learning to type, whether it was on a typewriter or computer.

5. Something you are grateful for today.
Another long walk with a fellow client and staff much like the one we went on two weeks ago. This time, just one staff went with us. This was a little scary for me, especially because the other client can talk triggering topics at times, but the staff cut her off when she did. This walk was also when the staff picked the cosmea flower for me.

6. Insert your own random thought here.
On Monday and yesterday again, I finally was able to be crafty again for the first time since getting into the new care home. Not polymer clay – that for now takes too long -, but I made a bracelet for the staff who were with me those evenings. I unfortunately forgot to take pictures.

Gratitude List (October 22, 2022) #TToT

Hi everyone. I’m feeling very overloaded today, but it’s too early for me to go to bed or I might wake up in the middle of the night and not be able to go back to sleep. Instead, I’m writing a gratitude post. As always, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful I was able to let go of the issue with the staff from two weeks ago.

2. I am grateful for delicious home-cooked couscous, which a staff member who is originally from Morocco shared with me and a few others at the care home on Sunday.

3. I am grateful I beat this same staff member 4-0 in the card game mau-mau again today, but also grateful he beat me on Thursday. I think I told you all last week that he’s learning the game from me, so I love it when he wins (but I love it just a bit more when I win!).

4. I am grateful I was able to try out polymer clay a few times this week. So far, all of my projects failed before I even attempted to bake them, but that’s okay.

5. I am grateful for white chocolate. I consumed quite a bit of it over this week.

6. I am grateful my medication got sorted. It was quite the ordeal last Saturday and I actually called the out-of-hours GP surgery, not knowing that, if my staff said I could cope without meds for a day or possibly two, that meant a doctor had actually said so already. In the end, I got my Saturday morning meds at around 9PM and am now thankfully fully in the electronic medication system.

7. I am grateful for quetiapine. I just took one about half an hour ago and thankfully, it’s calming me.

8. I am grateful for fish. Doubly grateful, in fact. Last Saturday, my staff took me to the marketplace for fish and, this afternoon, the staff ordered fish for everyone at a fish shop in the next town.

9. I am grateful for warm weather. The daytime temperature hardly got below 15°C this past week and, for the past several days, it’s been 18°C.

10. I am grateful for a nice, long walk across institution grounds and through the nearby forest with a fellow resident ant two staff. I regret not having taken my phone with me so that I could have taken pictures.

What are you grateful for?

TGIF: Lonely in a Crowd

Today, Paula Light talks about loneliness in her TGIF post and I thought I’d follow suit. There is this weird feeling when you feel loneliest when surrounded by a roomful of people. I’ve been feeling this way lately.

It’s not as bad as it was during my high school years, when I felt isolated in the full cafeteria because I knew no-one wanted to talk to me. I mean, back then, especially in the first year, classmates were assigned to guide me through the building and I’d be sitting during lunch break with whoever was my guide for the day. It was very obvious that most if not all classmates didn’t want me there.

The situation is different now. My fellow residents definitely do seem to want me in the living room with them. Several ask when I’m coming to have coffee there again as opposed to in my room. Some specifically come out of their rooms to join me when they hear my voice. In short, it isn’t that I’m unwanted.

And in a sense, it isn’t that I can’t connect either, although that’s probably more where my loneliness is coming from. I struggle to strike up conversations with my fellow clients especially when more than one person is talking at the same time and even more so when the staff are having a separate conversation among themselves. I also get overloaded really easily, but don’t tend to notice until it’s too late. As a result, I struggle with a need for connection but also a need for a sensory-friendly environment and these often clash. Lately, I’ve chosen connection, but I fear this will lead my staff to decide I am ready for less one-on-one support. I don’t want to be seen as too demanding of attention, but when my needs clash, I really do need support to find the right balance.

The Wednesday HodgePodge (October 19, 2022)

Hi all. I’m joining the Wednesday HodgePodge again. This week’s questions are truly random or at least I cannot see a common theme to them. I don’t mind though. Here goes.

1. What’s something you wish you’d figured out sooner?
That I am the beloved of God and that it really doesn’t matter what my family or anyone else thinks of me in the end, God will ultimately judge my heart.

2. Something from childhood you still enjoy today?
Swimming, playground equipment (when it’s strong enough to carry adult me, such as here at the institution), children’s books.

3. Are you a fidgeter? What’s the first thing that comes to mind when you hear the word fidget?
I am a definite fidgeter! The first thing that comes to mind is hair twirling. I’ve done it since adolescence. When I was 21, my autism diagnosing psychologist in fact told me I really had to unlearn it because it was a “serious social handicap”. Thankfully, the only people who agreed were my immediate family, who had more or less abandoned me by this time anyway.

4. Your favorite fall vegetable? How do you like it prepared?
Broccoli! In fact, about a month ago, I was discussing with a former staff what vegetable I’d choose if I could eat only one for the rest of my life and I picked broccoli. It is such a versatile vegetable. I love it cooked plain or with a creamy sauce, stir-fried or even raw in a salad. Next up are carrots. I eat them raw as a side to my lunch almost everyday.

5. What’s something you find mildly annoying, but not annoying enough to actually do anything about? Might you now?
My headphones (the cheap Chinese brand ones I bought six months ago as a replacement for the Bose QuietComfort 45 ones that broke within three weeks of me having bought them) being basically useless as wireless headphones due to the battery draining very quickly. I have been intending to replace them for a few weeks, but can’t decide for sure on a new model. For now, I’m using my AirPods with my iPhone, but this is indeed slightly annoying.

6. Insert your own random thought here.
I’ve been in the main institution care home for two weeks today and it’s going pretty well. We had some issues early on, among other things with my medication, but all has been sorted now.

Gratitude List (October 14, 2022) #TToT

Hi everyone. I’m still struggling a little, but this means it’s all the more important I look at the positives of my life. For this reason, I’m joining in with Ten Things of Thankful for a gratitude list. Here goes.

1. I am grateful my support coordinator is back in the home today after several weeks of being either off work or busy with out-of-the-home duties.

2. I am grateful the staff whom I had a huge issue with last week – the details of which I won’t disclose on the blog -, hasn’t been working here since.

3. I am grateful my support coordinator offered to sit with me and said staff to talk things over so that I can let them go. We aren’t yet sure when this can take place.

4. I am grateful I found out an oven/microwave combo works for polymer clay after all, provided you set it to its oven setting. This means I will most likely be able to use my home’s oven for polymer clay.

5. I am grateful for a nice visit from my mother-in-law on Tuesday. I am also grateful I was able to walk for an hour during said visit.

6. I am grateful for green tea without any additional flavors. That’s my favorite tea, or maybe really it’s the only tea I’ll drink. I am grateful the staff ordered it.

7. I am grateful for relatively nice weather. It’s been raining a bit over the past few days, but not all day, so I have been able to take walks every single day this week.

8. I am grateful for some distraction in the form of a few games of mau-mau, a card game, with my one-on-one. I was even able to teach one of my staff the game and he beat me to it.

9. I am grateful I tried penne carbonara on Tuesday, since it turned out I actually sort of like it.

10. I am grateful I usually get along with all my fellow residents here at the home. Of course, we all have our issues and it’s an intensive support (ie. behavior) home for a reason, but for the most part they’re nice people.

What are you grateful for?

The Wednesday HodgePodge (October 12, 2022)

Hi all. I haven’t been around in a few days and am not too motivated to write. However, I don’t want to abandon this blog altogether, so I’m participating in the Wednesday HodgePodge for today. Here goes.

1. Thursday (Oct 13) is National Train Your Brain Day. What do you do to keep your brain in tip top shape? Is it helping?
Does reading and writing in English, which is my second language, count? Other than that, not very much. I used to love a word game called 7 Little Words, but it’s not as accessible now as it used to be.

Is it helping? I’m afraid not. I feel like I’ve been slowly deteriorating over the past fifteen years.

2. You can sit with anyone in the world and “pick their brain”…whom do you choose? Tell us why?
Anton Došen, a former professor of psychiatry of intellectual disability here in the Netherlands and the first one (if I’m correct) to describe the discrepancy between cognitive and emotional development.

3. What’s something happening in the world (or your corner of it) right now that you have trouble “wrapping your brain around”?
Too many things to count… Politics, the economy, the war in Ukraine, my staff’s expectations of me… God’s love… etc.

4. On a scale of 1-10 where do you fall in the pumpkin fanclub? (1=blech, 10=make it all pumpkin all the time) Tell us something delicious you’ve tasted recently that had some pumpkin in it somewhere.
Hmmm, I don’t really care for pumpkin that much, unless it’s mixed in with other vegetables in some kind of stew or something. I’ve never had pumpkin spiced anything either.

5. Share a favorite song, book, or movie with an autumn title, setting, or vibe.
I have absolutely no idea.

6. Insert your own random thought here.
I am struggling. For one thing, fall is the hardest season for me. For another, settling into my new home is really difficult. Thankfully, I’m getting to know my staff a little and trying to let them know how I feel. This is hard, as I don’t want to be seen as too demanding. I am pretty sure some staff see me as such anyway.

Gratitude List (October 7, 2022) #Blogtober22

Hi everyone. It’s Friday, which usually means the Ten Things of Thankful linky is live. It isn’t yet as of the time of this writing, but if it will be live tomorrow, I’ll link this post up regardless. After all, I really want to do a gratitude post. It so happens that today’s prompt in #Blogtober22 is gratitude. Let me share.

1. I am grateful I was able to see most of my staff from my old care home and give them something from my shelf of handmade items before I moved here on Wednesday. I left the things that hadn’t been picked yet to be distributed among staff I didn’t get an opportunity to see.

2. I am grateful for delicious French fries on Sunday. Okay, it was my idea and I paid for them, but I am grateful the staff were willing to drive to my favorite snack corner in Raalte to get them.

3. I am grateful that the one client at my old care home who can talk a little, came by my room once it downed upon him that I was leaving. He gave me a candy bar and started to cry a little. I am grateful I was able to comfort him.

4. I am grateful for all the nice goodbye presents I got from the home and day center. I still don’t have pictures, but will show you once I do. Among other things, I got a giraffe soft toy and a framed collage containing photos of me.

5. I am grateful that, on Wednesday, the staff who were going to help me move were in the home early. After all, I woke up at around 7AM and am so glad I could get help then.

6. I am grateful my new staff don’t leave me alone for prolonged periods of time. In my old care home, it had been determined that I could be left alone for up to 45 minutes at a time, and this sometimes got prolonged to several hours if staff just popped their heads around the door when the 45-minute timeframe was up. I indicated pretty early on that, now that I don’t know my way around the home, I think 45 minutes is too long. Thankfully, the staff are able to accommodate me.

7. I am grateful for nice chatter with my fellow residents at the new home. I am also grateful for several clients from other homes who greeted me and started talking to me on my walks.

8. I am grateful my call button works after all. It didn’t work the first day in my new home, but yesterday, it got fixed.

9. I am grateful for home-cooked meals. Even for me, a rather picky eater, I think the staff are able to cook quite good meals, better at least than the meal delivery service ones. On Wednesday, I even at one point wanted to try some mash, which I normally can’t stand. I eventually decided against it though.

10. I am grateful a fellow client at my new home, who is into St. Nicholas, gave me a candy mouse this afternoon. This is a typical St. Nicholas treat. It was such a sweet gesture.

What are you grateful for?

Saying Goodbye to Mental Health Services

Hi everyone. October 10 is World Mental Health Day. In honor of this, many bloggers are writing about mental health this week. As a person with serious mental health challenges, I think I need to offer up my contribution too. However, mine will be a bit different, in that just last Tuesday I had my for now final appointment with a professional from a mental health service.

I did not usually share details of my less than stellar experiences with my psychiatric nurse practitioner on the blog, but let me say that my appointments, except for those concerning medication, over the past three years, have for the most part been useless. Maybe my expectations of an assertive community treatment team were too high. For those who don’t know, an assertive community treatment team is an outreach-based team that treats the most severely mentally ill, usually care-avoidant patients. As a result, a lot of the care they do is more like support and steering towards services than actual therapy. They do have a psychologist on the team, but the majority of clinicians are actually community psychiatric nurses.

Back when I got kicked out of the psych hospital in 2017, I did need such a team, as I needed lots of support in my daily life. However, once I’d moved into long-term care, maybe an assertive community treatment team wasn’t the most logical choice of treatment teams. And yet that’s where I ended up.

Not to say it’s all my or my referring agency’s fault. My nurse practitioner did flat out refuse to refer me anywhere else even when he should have realized he couldn’t provide the kind of treatment I needed. He also claimed we were doing “trauma treatment” by merely talking over my mental health struggles, which happen to be trauma-related, occasionally. In my opinion, it was neither specifically trauma-focused nor treatment.

Now I know that my staff and the behavior specialist at the care home are probably as capable as my mental health professionals were at helping me deal with my everyday instability. Neither can provide trauma-focused therapy, while both can provide a listening ear (my staff at my old care home at least often better than my nurse practitioner, in fact).

I did, of course, start my topiramate and pregabalin while in treatment with my now former mental health team. This I do credit the team’s psychiatrist hugely for. I don’t honestly think an intellectual disability physician would’ve been able to come up with this idea and I’m not sure a consulting psychiatrist would’ve gotten the idea either. Then again, now that I’m on a stable dose of both meds and only wanting to slowly decrease my aripiprazole, my agency’s intellectual disability physician can manage that.

All this combined got me to conclude that I don’t think I want mental health services anymore. If I or any of my current professionals ever change our minds, I can always get referred back to a mental health agency.

Moving Into the New Care Home

Hi all. I’m departing from the #31Days2022 prompts today, because the prompt for today, “other”, didn’t spark any creative muse in me yet. Instead, for today’s post, I am writing about my move into the new care home. It’s been quite the overloading day, to be honest.

I had set the alarm for 7:30AM, because the moving crew would be in Raalte at eight to collect my desk and chair. The rest of my belongings had been moved to the new home yesterday. Not surprisingly, I woke up before the alarm went off. Thankfully, there already was a staff available for me. When the moving crew had removed my furniture, I had breakfast at another table.

Thankfully, there still was time for a walk before it was time for me to collect the stuff that could go into the staff’s car and to drive off to the new home. This stuff included the soft toy I’d slept with, my clothes from the night before as well as the goodbye presents I’d gotten from the home and day center. One of the day center staff specifically came by to say goodbye to me on her day off.

As we got here to the new home, we were greeted by a man whom I’ve come to assume will be my assigned staff but of which I’m not sure. We were allowed to unpack, which took several hours. I had lunch after everyone else had already had theirs.

My staff from my old care home in Raalte left at around 2PM. From then on, several staff have come and gone into and out of my apartment. I did go for a walk around grounds at around 3:30PM. Several clients from other homes greeted me and my staff and started talking to us. I liked it, but it was a bit overwhelming at the same time.

At around 5PM, I got very irritable. The reason was the fact that my call button doesn’t work as of yet. It looks like it may’ve been set to be received at the night staff’s office in the main building, where during the day there’s no-one. I hope that’s true, as otherwise I won’t be able to reach anyone during the night.

I also found out there’s no handle to lock my room’s door from the inside without a key. I immediately drew the conclusion this means I can be locked into my room. Of course, the staff said they wouldn’t, but the mere fact that they can, causes me intense fear.

I am trying to stay as calm as possible as I write on my blog now that I’m alone. Thankfully, I can tell time – the staff verified this, which may seem stupid to those reading my blog but was actually validating to me. Now that they know I can tell time, they can tell me when they will be back. This does help me.