#WeekendCoffeeShare (December 10, 2022)

Hi everyone. How are you doing? I had my last cup of coffee for the day, but still I want to join in with #WeekendCoffeeShare. I guess you could get a Senseo if you want one, or a cup of tea, or soda. Or you could go for water like I will now. Let’s have a drink and let’s chat.

If we were having coffee, I’d ask you how your weather’s been. It’s been a month since I did a coffee share post and winter has well and truly arrived by now. Daytime temperatures hardly get above 0°C, although we don’t get very low night-time temperatures. Thankfully, despite the cold, I’ve been able to go on walks everyday, as it’s not been raining that much.

If we were having coffee, I would share that I finally reached breaking point here at the new care home last week and my mother-in-law called the home to get to speak to a higher-up, either the behavior specialist or the manager. She was told that I’d had a good day that day. While that was mostly true, it wasn’t about that day. My mother-in-law then contacted the mediator I had been in touch with too. She is independent and helps advocate for clients or family members but is paid for by the care agency.

After a week of playing phone tag, the mediator finally got in touch with the manager and was able to convince her to schedule a meeting between me, the mediator herself, a staff and the behavior specialist. This will most likely take place before Christmas, so the staff who will be attending won’t be my support coordinator, as she’s off on vacation till after then. I did ask that my mother-in-law be invited too, which the mediator initially didn’t feel would be appropriate. Her reasoning was that it’d be too many people attending and that she (mediator) would be there to support me already. However, the mediator is not able to realize how much I’m not able to process during a verbal conversation, so I stood my ground.

If we were having coffee, I would share that, earlier this week, one of the staff and I were able to create a new, more suitable to me day schedule. It was (unofficially) started today (while we’re waiting for the staff to type it out). The new schedule is organized around timeframes, like my day schedule at the old care home, but of course with the note that these are rough directions. I am quite satisfied with my first day using the new day schedule, but of course I do realize that it may only be 2 1/2 weeks before it will be trashed by my support coordinator.

If we were having coffee, I would tell you that I am loving spending time on my polymer clay again. I am not getting my hopes up yet, but, in my new day schedule, I have lots of opportunities for claying. I made use of them today and created my first actual unicorn! Granted, it doesn’t have a mane or tail yet, because with the particular tutorial I used, you had to bake the unicorn and then attach those parts and bake again. I am hoping to do that tomorrow. I however am completely excited about crafting again. Now all please pray my new day schedule works out and my support coordinator won’t trash it when she comes back.

If we were having coffee, lastly I’d tell you all that I got some lovely presents in the mail from my parents on Thursday. I got a lavender-filled unicorn soft toy that can be heated in the microwave. I also got three different kinds of candy: chocolate, licorice and so-called Dutch traditional candy, which was hard candy. I loved all of them. The online shop also sent a few random samples of a sugar soap, so-called immune boosting capsules and some kind of fruit and veggie powder that you need to put into water and drink. I threw these away. So far, I haven’t actually microwaved the unicorn, but I did hold it when trying to sleep.

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

#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?

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?

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?

Gratitude List (September 16, 2022) #TToT

Hi everyone. Right now I’m very hyper because of some really great news I just received. I’ll get to that at the end of this gratitude list, so you’ll have to be patient (or skip ahead). As usual, I’m joining Ten Things of Thankful with this post. Here goes.

1. I am grateful for my improved physical fitness. My cardio fitness level according to my Apple Watch is still low, but it’s slowly creeping up. My heartrate recovery is within the “good” range though. Granted, the watch only measured it after brisk walks, since I can’t run.

2. I am grateful for eggs. The guy from the care home next door to ours who has chickens near the day center, lets me check for eggs during the weekends when he’s home with his family. On Saturday, I found one. Then today, he gave me one just because he wanted to.

3. I am grateful the orthopedic shoemaker finally gave in and is going to get me completely orthopedic shoes rather than the semi-orthopedic ones I had been struggling with for the past two years. The semi-orthopedic shoes kept giving me blisters even after he adjusted them many times. For the fully orthopedic shoes, the shoemaker’s coming to measure my feet and make an imprint or whatever in early October. From that point on, it may still take six months before I get the actual shoes, but oh well.

4. I am grateful the orthopedic shoemaker finished repairing one of my regular walking shoes. For those who don’t know, the fronts keep getting damaged within weeks due to my drop foot. Now the shoes are at the main institution, where normally only a transportation guy picks them up to bring them to Raalte once a week on Thursday. The staff here are trying to send someone out there to pick them up on Monday.

5. I am grateful I decided to buy an extra pair of walking shoes.

6. I am grateful for new clothes. I went shopping for them on Wednesday. I bought two jeans and a blouse.

7. I am grateful for iOS 16 and WatchOS 9. I decided to update on Wednesday after all. Both have a few bugs, but not that many that they cause serious problems. Particularly, I am grateful that, after all sound disappeared from my Apple Watch after the upgrade, a restart (with sighted assistance) solved the issue. I am also grateful not to have encountered the bug so far that causes VoiceOver to stop working after restarting your iPhone.

I am grateful for all the new features with WatchOS 9. I love sleep phases and heartrate recovery like I mentioned. I also love that the Translate app on iOS is now available in Dutch too.

8. I am grateful I am doing pretty well on the fitness challenge I participate in this week. I have consistently maintained a position in the upper mid range, around 25th out of 107 participants.

9. I am grateful for a great weight loss result today. I lost another 0.9kg. Last week, I’d lost the same amount. I’m now 66.5kg, which is pretty awesome considering when I came to the care facility I was almost 10kg heavier and I’ve lost over 5kg since starting my food plan in January. I do realize I need to make sure I’m not overdoing it with exercising or I’ll gain all the weight back once the weather’s not so good anymore and subsequently I’ll lose my motivation to walk.

10. I am grateful for some sunshine today. We had rain too, for which I’m also grateful, but I’m happy I could go for some walks outside in the sun.

11. And now on to the great news… I am grateful the main institution home I’m on the waiting list for has a room for me real soon. I will be orienting on Wednesday and the Monday after and, if then I decide I want to move there, moving date has been set for October 5! Remember it’s up to me and, if I don’t want to move there, no-one is kicking me out of here. This is all causing a whirlwind of emotions and thoughts. After all, the only other time I ever requested to move myself, I had to decide within the day of a place having been found and it was the worst decision I ever made. Thankfully, my husband is coming to the second orientation visit with me and my staff will come with me on both visits. Now I’m going to write out some questions I have for the home.

What are you grateful for?

TGIF: Weather

Hi all. Fridays are usually pretty active in the blogosphere and there are lots of prompts to choose from on this day. Today, I discovered another one, Paula Light’s TGIF. Today, Paula took the opportunity to talk about the weather and for this reason so will I.

Let me start out with the positives: we had some amazingly warm late summer weather early in the week. Not too hot for my liking, although it did get to 30°C on Tuesday, which I understand is too hot for some. Wednesday was the best: some sunshine but some clouds too, no rain and 25°C during the day.

Thankfully, we did get some much-needed rain too. We got a thunderstorm Tuesday night. My Apple Watch registered sound as loud as 82dB during the storm. I wonder how accurate that is, but well.

We also got some rain yesterday as well as today. Today, in fact, it rained most of the day, but I still managed a short walk outside in the morning.

I tried out my orthopedic shoes, which came back from the shoemaker for the umpteenth time. Well, those who’ve read the orthopedic shoe story before can probably guess what’s next. Yes, indeed, I did get another small blister on my right heel after a walk of not even 20 minutes. I’ve told you guys before that the shoes won’t be fixed until 2034 and I’m more and more confident I’m correct after all.

Despite only managing one walk, I did reach my Apple Watch’s Movement goal today. Okay, I did go on the elliptical for just over 15 minutes too. That went surprisingly well, honestly.

Tomorrow, if we aren’t getting lots of rain in the morning, I’ll likely go for a longer walk. A staff who walks quite fast works my one-on-one shift then. Last time we went on a walk together, I broke my speed record: 13 minutes 11 seconds per km. That’s not very fast, but it’s not slow either. Let’s hope for not much rain tomorrow morning.

#WeekendCoffeeShare (September 3, 2022)

Hi all on this beautiful first Saturday of September. I for whatever reason keep typing “July” rather than “September”. Maybe that’s me wishful thinking. Anyway, here’s my post for this week’s #WeekendCoffeeShare. I just had my afternoon coffee, but the other clients are currently having theirs, so I bet there’s still some left for you. Let’s have a cup of coffee (or another drink, if you so prefer) and let’s catch up.

If we were having coffee, I’d start out by asking about your weather. Ours is beautiful. Today, we’re supposed to get daytime temps of up to 27°C. On Monday, the temperature’s even forecast to rise to 30°C. I guess my husband was wrong a few weeks ago when he predicted that it’d get only colder from that point on.

If we were having coffee, I’d tell you about all the physical activity I got in this past week. I got in a total of 330 exercise minutes according to my Apple Watch this week so far, exercise being anything at least the intensity of a brisk walk. I guess this means I can up my goal from 20 minutes to at least 30 a day. Then again, I badly want to reach it everyday.

If we were having coffee, I would use the rest of this post to share the details I promised you all in yesterday’s post about the potential new care home. You see, on Thursday at 2PM, the behavior specialist came by my room. The appt had already been planned or so I believe, because of the situation I shared a few weeks ago about an application having been put in for me to live at a senior citizens’ home for the visually impaired, a place I don’t consider suitable. I knew from my care facility’s manager that she understood this place doesn’t sound suitable indeed and also that she had heard that the people at the main institution for my current care agency, with whom I’d met at the end of July, were pretty enthusiastic about me. However, the manager didn’t expect to hear anything from them until next week.

Well, as it turned out, my behavior specialist had planned a meeting with the behavior specialist whom I’d met in July as soon as she could, which was last Thursday. It turns out I am number one on the waiting list for a home at the main institution. The home caters primarily to people with moderate to severe intellectual disability with a need for intensive support due to additional problems such as autism, attachment issues, etc. The level of intellectual disability is significantly less severe than in my current home, so I can actually make smalltalk with the other residents. The staff offer help with activities of daily living (personal care) where needed. Each resident has their own day program. This means that residents aren’t required to go to the day center by default. In fact, some of the residents go some of the time, others ride their bikes around institution grounds, while still others can’t leave the home unsupervised.

I told my husband about this home and he immediately replied that it sounds perfect. Well, I said, that isn’t possible, but it does sound pretty good indeed.

Of course, I am on the wait list, so there currently isn’t an available room, but the behavior specialist said they are working towards finding a new home for one of the current residents. She said it might go quickly but it might still take six months or so. Well, if you ask me, even if it’s going to take six months, that’s still super quickly. That’d honestly mean I’d have found a place within the year from saying I want to find a more suitable home.

I will get an extensive orientation, getting to look around at least twice before I decide whether I want to move to this home. I am both nervous and excited. Mostly quite excited though. I’d read up about this home before and wished I could live here and now my dream might come true.

How have you been?

#WeekendCoffeeShare (August 20, 2022)

Hi everyone. I’m joining #WeekendCoffeeShare today. Even though I was late having my last cup of coffee this evening, I’m even later writing this post, so sorry, no coffee left for you. We do have soft drinks though or you can have water or maybe I can make you a cup of tea. That being said, I’d advise against black tea, since it’s at least almost my bedtime by the time I finish this post. Oh wait, this is a worldwide gathering over virtual coffee or tea or whatever we like. Let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking how your weather is. Ours has been good all week, with temperatures rising to 30°C on Tuesday and in the mid to upper twenties (Celsius) during the rest of the week. Some days, it was too hot and especially humid for walking, but other days, it was just the right temperature.

If we were having coffee, I would tell you I’ve been busy thinking of what to create for the fellow resident who has his birthday next Thursday. After all, originally I intended on creating a canvas with polymer clay cookie cutter shapes of a car and the letters of his name on it, but the cutters for the letters won’t work with polymer clay, because the inside parts of some letters are much shallower than the outline. I thought about buying different cutters, but my husband came up with the idea of glitter stickers. They had them at Hema, a department store here, or so he thought. Not at the one we were at today, so I ended up buying regular letter stickers. Thing is, these are much smaller than I’d intended. Besides, I’m not sure stickers will stick onto painted canvas. I’m probably just making a card with those stickers and then doing the polymer clay car in some other way.

If we were having coffee, I’d share that I’m quite discouraged where it comes to my possibly moving to another care home. I had a meeting with some people from the main institution for my care agency three weeks ago, but haven’t heard from them. Other than that, I found out yesterday that the only place the care consultant applied for me at is a senior citizens’ assisted living facility that happens to cater to the blind. In a way, I can see his point, in that my funding is based on blindness and, in this sense, an intellectual disability facility like my current one has to tweak stuff in order to accept me. That assisted living facility is probably the only place within an hour’s driving distance from Lobith that accepts blindness-based funding. Then again, other than them catering to the blind, I can see absolutely no reason why the place would be suitable. And honestly, them catering to the blind may in fact be a drawback, as it means I can’t use my blindness as an “excuse” to explain complicated difficulties of mine by, hence my needing to explain myself in detail. That really has caused me extreme problems of being overloaded in the past. I mean, it would be okay if the staff knew blindness and cerebral palsy and autism and emotional developmental dysfunction and all the issues that cause me to struggle greatly in real life, but as far as I’m concerned most of these don’t affect the elderly in particular.

If we were having coffee, I’d try to end on a positive note though by telling you I had a good time with my husband today. He was originally supposed to be here by 1PM, but got stuck in traffic and couldn’t be here till 2PM. He almost turned around, because we had a misunderstanding about it, but he eventually got here and then we drove to Enkhuizen. Enkhuizen is a town about 100km from Raalte, so halfway across the country. My husband wanted to have fish, but not here in the east, which was his excuse for driving there. Then we walked around the town center, going to Hema for those stickers I mentioned above. Then we drove back to Raalte, grabbing a McDonald’s on the way in Kampen. I had a Mexican style crispy chicken, which was huge and delicious but not overly spicy. We really want to be taking more day trips together.

How have you been?

The Wednesday HodgePodge (August 17, 2022)

Hi everyone. I’m joining the Wednesday HodgePodge again. Here are Joyce’s questions.

1. August is National Back To School Month…how does that make you feel? Share a back-to-school memory.
I don’t really feel much regarding back-to-school time, as I’m not in school anymore (it’s been 17 years since I graduated high school) and my nieces are too young to be in school. I’m so glad to be out of school though.

A back-to-school memory? My first day at the school for the blind I spent fourth till sixth grade at. We went to church to mark the beginning of the school year, as it was a Christian school. I found it all very strange, having never been to a church before, since my parents are atheists. I’m pretty sure I fell asleep during the service though.

2. Something you’ve learned in “the school of life”?
People who get paid to have any sort of relationship with you, won’t stick around for you, so you have no reason to stay for them either. Yes, I’m referring to my wish to transfer to another care facility here.

3. Three words to describe your current mood.
Unquiet, determined, sad.

4. A summer food you’ve eaten too much of/are tired of? A summer food you haven’t had enough of?
There isn’t any summer food I’m really tired of, though today I turned down another ice cream cone because I’d had three in the past week already. A summer food I haven’t had enough of? Summer fruit!

5. What small stuff do you sweat that you know you shouldn’t?
I tend to get very easily frustrated, so quite a lot, but lately I’ve also tried to solve small problems more rather than just not caring. An example are air bubbles in my clay. The reason that I do try to solve the problem now, is that I know how to (to an extent) rather than just having to wait for my pieces to be cured and then deciding whether they go in the trash or are just about good enough to be displayed. It’s a tricky balancing act of trying not to sweat the small stuff but also trying not to be careless.

6. Insert your own random thought here.
Yesterday, we had daytime temperatures of 30°C. It isn’t expected to get this hot again anytime this year. My husband, not surprisingly, started the Christmas prep WhatsApp group with his family. He always does in mid-August. I, too, before we got to discuss this, started reading a winter-themed chapter book.