I Complained About the Cold

One of Mama Kat’s writing prompts for this week is to share the last thing you complained about. If I have to believe the staff here, it’s pretty much in my DNA to complain. At least, more than one have been calling me dissatisfied as if it’s a personal attribute.

Indeed, I am not naturally all that optimistic. I remember one day in high school my teacher asked me whether the glass was half full or half empty, assuming I’d say half empty. I said I didn’t know, because I didn’t understand the question, if for no other reason, then because there was no half full/half empty glass in front of me. However, even if he’d asked me whether I tended to look at things from a positive or negative perspective, I might not have known. I know now I lean towards the negative, but I don’t see it nearly as much so as others perceive me as.

This morning, one of the staff – a nice staff, usually – called me dissatisfied because I was complaining of the cold. Not the weather, mind you. The temperature inside my room. For clarity’s sake, we aren’t forced to save on heating here (at least, not yet), but the heating had been turned down by her yesterday because it had been hot here. Granted, after several staff complaining of the heat (I didn’t mind, though it was warmer than it should be), I had finally given her permission to turn down the heating. I shouldn’t have.

Two weeks ago, the heating had last been touched, because at the time it’d been freezing cold here due to the heating being broken. After an entire weekend (when the temperatures at night had dropped to -6°C) of no heating, the thing got fixed and I hadn’t dared let the staff touch it again despite it being a bit on the hot side in my room. After yesterday I gave in, it was cold again today. Not freezing cold, but uncomfortably cold to the point of causing me overload anyway.

The staff turned up the heating again – which unfortunately ten hours later hasn’t proven effective yet – and suggested I wear warm clothes. Not that I wasn’t wearing winter clothes already, but apparently I needed to sit in my room wearing three layers of clothing. Plus gloves, as my hands were cold too. I refused. This was what got me to be called dissatisfied. Of course, the staff didn’t tell me to wear gloves, but I did explain that my hands were primarily cold.

I also explained that I was anxious about having to be freezing all weekend again because maybe touching the heating had somehow broken it again. To this, the staff replied that I was assuming the worst. Well yes, I was, but it wasn’t like it hadn’t happened before.

I’m sad that I’m seen as generally dissatisfied even by staff I think are nice. I mean, I know they get a lot of negativity from me about the other staff and occasionally about their own behavior. Recently, I sent one of the nice staff away angrily because she was the fourth staff supporting me that shift. The thing is, the not-so-nice staff don’t take it personally. The nice ones do even though I don’t mean any of my complaints personally. The fact that a staff has made it on my “nice” list, doesn’t mean they can’t ever do anything wrong or, if they do, that they won’t hear about it.

Finally, after writing up most of this post and complaining to my husband about the cold, my husband said I should tell the staff my heating is broken and ask them to call the servicemen if it’s still cold tomorrow. Half an hour ago, the staff who had called the servicemen last time – on a Sunday, because he agreed it couldn’t wait till Monday -, came into my room and I asked him to check my heating. He did and agreed it’s probably broken again, so he’s phoning the servicemen again tomorrow. I’m so glad. When the heating can be made to behave or can be fixed altogether, will remain to be seen.

Mama’s Losin’ It

Joy in October and November

Hi everyone. I didn’t post an update on my word of the year last month, so I’m doing one now. My word is “JOY”. As usual, I’m linking up with the #WOTY Linky as well as Lisa’s One Word Linky. Here goes.

I honestly can’t remember the joy I was looking forward to experiencing next month at the end of September. I just had a look at the post I wrote then and I said then that I was hoping to enjoy real food, as the staff at my new care home cook. I wasn’t as high with anticipation as I now looking back thought I was, realistically saying I’d have a lot to get used to so was just hoping to enjoy some everyday pleasures. I didn’t specify what these included.

As regular readers of my blog will know, I indeed did and still do have a lot of getting used to do. In fact, I’m pretty sure I won’t ever truly adjust to the chaos that is the new care home. As a result, I didn’t experience much everyday joy over the past few months. I did for the most part enjoy the real food, but not as much as I’d have liked, as I wasn’t involved at all. I’m hoping to be able to contribute to thinking up the menu soon, but the staff usually receive ideas from the clients while they are in the communal room and the staff are in the adjacent office. Since I hardly ever join the other clients in the communal room and there’s no set time for the staff to think up the week’s menu so that I could then, it may be hard for me to participate, but I at least voiced my wish to do so once again.

Over the month of November, I did finally try my hand at crafting semi-regularly again. During October, I tried to as well, but there hardly was any time for the staff to help me so I struggled to find the opportunity. I managed to finish two polymer clay pieces during November, the latter of which unfortunately didn’t cure properly so it broke.

I also enjoyed two hour-long walks during October. During November, my mobility wasn’t as great, so I struggled even with 30-minute walks. I did eventually manage to take a couple of pictures during my walks though.

I also looked forward to enjoying visits from family in October. Indeed, my sister did visit me. So did my husband and mother-in-law, both regularly during the past two months. These visits are a welcome excuse to leave the care home.

Honestly, I am not sure whether, at the end of September, I somehow knew that the new care home wasn’t going to be what it was cracked up to be and that was the reason I didn’t specify the everyday pleasures I hoped to enjoy. Even if I knew then, the adjustment honestly is far more intense than I expected it to be. In truth, I’ve been pushed far beyond my limits and the experience has been mostly a nightmare.

Now, at the end of November, I am noticing some tiny glimmers of hope on the horizon that might mean the new care home could actually become less than nightmarish for me eventually. I am not sure these will mean anything in the coming month yet, so I will continue to focus on small joys. For example, I am hoping to enjoy crafting even if I can’t enjoy it nearly at the level I used to. I am also hoping to enjoy some walking, weather permitting, as well as continued regular visits from my husband and mother-in-law.

The Wednesday HodgePodge (November 23, 2022)

Hi everyone! I’m still struggling and neglecting my blog as a result. I fear this blog may be coming to an end someday within the not too distant future. Still, I hope not. Today, I’m participating in the Wednesday HodgePodge once again. Here goes.

1. Have you ever been on a cruise? If so where did you go and how did you like it? If not, do you have any desire to take a cruise someday?
No and I don’t think so. I’ve heard and read about just a little too many cruise ships sinking.

2. Tell us about your Thanksgiving plans…are you hosting? cooking? eating out? turkey or some other main? is it stuffing or dressing in your house? homemade cranberries or cranberries in a can? are pies on the dessert menu? what kind? what are your ‘must have’ sides? Tell us one thing you’re especially grateful for this year.
I’m not in the United States, so no Thanksgiving plans for me. I will be going to Lobith (where my husband lives) over the weekend though. We have been making plans for cooking a chicken and rice curry.

As for something I’m especially grateful for, I’d have to say the support of my mother-in-law. She sticks by me through the rough situation with my care despite being busy with her volunteer job herself.

3. If someone approaches you and asks for money do you give it to them? Do you drop money ‘in a tin cup’ that belongs to a person on the street? Do you have a specific charity you support during the holiday season and/or year round?
I don’t usually give money to people who ask. That includes people on the street. I used to give money to people on the street but stopped doing so after one of them got me to give him a larger than I would normally do amount of money because he had a pitiful but unbelievable according to my husband story. I don’t support any charities either, except for the member organizations I belong to, the Eye Association (for people with eye conditions) and CP Netherlands (for those affected by cerebral palsy).

4. Have you started decorating for Christmas? Is your tree up? Shopping done? Wrapped?
Not at all. I have a few Christmas decorations left over from last year (gave my tree away because it consumed huge amounts of batteries), but I haven’t put them up yet. We don’t do Christmas presents in my husband’s family and I won’t see mine at all. In fact, I can hardly believe it’s just one more month until Christmas.

5. Create your own acrostic using the word THANKS.
Thankful for a
Home to call my own
A husband who supports me
Necessities provided
Kind staff (sometimes) in the care home
Striving to make the best of this life

Of course, that “home to call my own” is in Lobith, by the way.

6. Insert your own random thought here.
I had quite a mixed day today. The morning shift was horrible, but the evening shift’s staff at least tried to make up for it, be it consciously or not.

TGIF: Walking and Crafting

Hi everyone on this third Friday of November. I’m joining Paula Light for TGIF. How is your day going? Mine’s almost over, as it is 9PM as I type this.

I had a pretty good day. Have had an okay week in general anyway. Finally got down to creating my first actual polymer clay piece here at the new care home, a flower. Creating this simple piece took me about 45 minutes yesterday, including gathering my supplies, watching the tutorial, conditioning the clay, etc. The piece nearly got ruined when the staff took it off the tile to transfer it to an oven-safe mat, but thankfully she was able to put it back together. I initially didn’t want to cure the clay because, once cured, if a piece is ugly beyond sanding/buffing, all you can do is throw it in the trash. However, after some thought, I decided I wanted something tangible to remember my first actual claying session in the new care home by.

As those who’ve seen my creations from back at the old care home, will know, this one can’t compare to those. However, I feel judging from the fact that I haven’t been actually working with clay in a long while, I did an okay job.

I also went on several walks this past week. Haven’t met my step goal, insofar as I have one – those who know the Apple Watch, know its movement goal is calorie-based, not step-based -, but I have been doing an okay job overall. My movement goal, by the way, is easy to reach. My exercise goal, not so much. My monthly goal for November on the Apple Watch is to reach my daily exercise goal 23 out of 30 days. I reached my monthly goals for September and October – different goals – with ease, but am struggling with this one, because walking and dancing are my only ways of exercising here now that I don’t have my elliptical anymore. I could cheat by starting some ball game workout when throwing a ball with my staff, but that’s not fair.

Overall, this week is going okay with respect to my care. A slightly modified version of the day schedule I mentioned last Saturday got shoved down my throat once again on Tuesday, but thankfully, most staff are willing to take it with a grain of salt (or a whole bucket of salt).

Unfortunately, the situation had to get worse over the weekend before it got slightly better and the slightly better (ie. an okay week this week) might just be chance. I won’t disclose details of the, in my opinion, unacceptable care I received over the weekend.

I talked to an independent mediator about my care situation today (this is not a secret, all staff know I did). I won’t disclose what exactly we discussed, but we’re hoping to resolve the difficult care situation as peacefully as possible.

Here’s hoping you’ll all have a good weekend.

#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?