Some Glimmers of Hope

Posted on by Astrid

Hi everyone. It’s once again been a week and a half since I last posted. This week and a half hasn’t been boring at all. In fact, it’s been filled with events that triggered all kinds of emotions in me.

Last week Saturday and again on Monday, I had some very difficult conversations with my assigned staff. She turned out not to mean things too badly, but just got very frustrated with my trouble understanding non-literal speech. We also once again ran in circles about this home being very different from the home I come from and my being used to the old home and never getting it like that here. I know, I don’t expect things to go precisely the same as they went there, but there’s something between the way I was treated at my old home and the very harsh way I’m treated here.

These conversations got me so frustrated that I started thinking I may need to get an independent client supporter to help me find another home. After all, moving to another home within my current care agency, isn’t an option.

Then on Wednesday, a staff told me about her plans for getting day activities rolled out at this home. I’m not sure I can participate in all of them, but some I can take part in. This staff also assured me that my assigned staff is completely on my side.

This also became clear when I had the meeting with the mediator, my assigned staff, the behavior specialist and my mother-in-law yesterday. My assigned staff admitted that some (most, in my experience) of her coworkers treat me just like they treat everyone else at this home. Apparently the harsh approach is what the others need, but I don’t (unless I for instance insult a staff member, which only happens during a severe meltdown, 99% of which can be prevented with the right support). We agreed that my signaling plan (for preventing and averting crises) will be revised, but the behavior specialist assured me that for the most part it can stay the same. After all, she said I haven’t become a different person since moving here. That felt validating.

I positively told the people attending that, since implementing my new day schedule, things have significantly improved. I also told them I realized this may be all I can expect of the staff, so I am (trying to be) all happy when it goes smoothly. However, when it doesn’t go smoothly – for example, when the staff are frequently late for my assigned support times or leave me alone beyond my assigned alone times more than occasionally -, I’m not happy. It gets worse when the staff justify their tardiness or leaving me alone beyond my assigned alone times with some comment about my not having (full-time) one-on-one. Their reasoning is that, since my one-on-one isn’t full-time, I essentially don’t have one-on-one at all and can just expect staff to pop in whenever they please. Their terminology is a bit screwed (I think I explained it in a previous post) and it irks me beyond belief. I know I don’t have full-time one-on-one and I don’t expect it, but I do have the day schedule for a reason.

Both the behavior specialist and my assigned staff validated my need for the day schedule and for staff to stick to it. I said I understand that a severely challenging situation among my fellow clients could be a factor preventing this, but the behavior specialist said this shouldn’t happen more than a few times a week. Currently, it’s usually at least once a day (and I obviously don’t mean the times my staff is running like five to ten minutes late for my support). My assigned staff actually went so far as to say the extra staff is there primarily for me. She is going to clarify this and some other things in a basic info sheet on me that all staff can read when starting their shift with me.

Altogether, the meeting gave me some glimmers of hope. It remains to be seen whether the staff actually do something with what came out of it. I do still have my worries about my support coordinator overriding all this once she returns from her time off. Then again, I am pretty sure that, if the behavior specialist actually means what she said, my support coordinator can’t really do that.

The Wednesday HodgePodge (December 14, 2022)

Posted on by Astrid

Hi everyone. It’s Wednesday again, so I’m participating in the Wednesday HodgePodge. Not that I do so each Wednesday or that Joyce even hosts them every single week. For example, next week there won’t be one. This week’s HodgePodge is mostly Christmas-themed. Here goes.

1. What does Christmas mean to you?
The birth of Jesus Christ, of course. I am a progressive Jesus follower. That being said, I don’t follow the faith nearly as deeply as I should. Each year around Christmas time, I usually experience a deepened connection with God, but I’m not feeling it this year yet, for which I’m sad.

2. What’s your favorite cozy holiday activity?
Eating cinnamon stars near the Christmas tree. Cinnamon stars, a type of cookies, are my absolute favorite Christmas treats. Last year, I got four packets of them from my day activities staff and used up the last of them in early March.

3. Is all your shopping-wrapping-baking done? Tell us about your holiday plans.
Yes or no, depending on your perspective. After all, we don’t really do Christmas presents in my husband’s family and I don’t see my own family for the holidays at all. I don’t usually send out Christmas cards either, although my husband does on my behalf too.

For Christmas, my husband is going to pick me up at the institution and take me to my in-laws’ house near dinnertime. That way, I hopefully won’t have to endure too much of the Christmassy buzz but my husband’s family will be able to enjoy my company. My sisters-in-law will likely be joining us for dinner too. Then, I’ll spend the night at my husband’s.

4. If you were Santa what treat would you like to have left for you (it doesn’t have to be milk and cookies!) What sweet or savory treat do you most look forward to indulging in around the holidays?
Leave me with some hot wings please, yum! As for my most looked forward to holiday treat, other than the aforementioned cinnamon stars, I love oliebollen at New Year’s. Do those count? By the way, for my American/English-speaking readers, oliebollen may look like what’s left over when making holes in donuts, but they taste very differently.

5. Next Wednesday is the first official day of winter (in the northern hemisphere). How does that make you feel? Tell us what you love most about winter?
I don’t like winter, the cold, shorter days or snow for that matter, so the official start of winter to me signifies the shortest day of the year and hence the fact that days are getting longer from then on. The one thing I do love about winter are its associated holidays, such as St. Nicholas, Christmas and New Year’s and the opportunity to indulge in special holiday treats these occasions provide.

6. Insert your own random thought here.
I got a lovely Christmas hamper full of sweets, cookies and chips from the care agency this evening. There was no room in my bin in the locked storage room for it, so I have everything with me now. Let’s hope this doesn’t end in a massive binge.

Re(dis)covering My Creative Self

Posted on by Astrid

Today I crafted a dachshund out of polymer clay. I haven’t put it into the oven yet, as I still want to create other things before baking them all together. I sometimes feel a rush to create, create, create as who knows when this will end? In two weeks’ time, my support coordinator will be back and may decide to put my old day schedule back in place, in which I had only one tiny moment when I could possibly choose to work with clay, inbetween my morning coffee, a long walk and my lunch.

I am taking baby steps towards becoming my creative self again. This blog post is part of the process, as writing too is part of creativity. I notice my writing suffered significantly due to the chaos that was (and may become again) my support at my current care home. I know I’ll still have lots of time to write if my support coordinator puts my old day schedule back in place, but time isn’t the only factor. Inspiration is, too. And when all I do is try to survive from moment to moment – the staff’s terminology for the times they step in to support me -, I am not able to be creative at all.

I am really trying to look at these few weeks as an opportunity to re(dis)cover myself as a creative person, not just as a disturbed, manipulative yet oh so intelligent person, like most of the staff see me. My hope is that the staff who see me as primarily oh so intelligent yet disturbed and manipulative, will soon realize that, with the right support, not only will those “disturbed” behaviors lessen, but I will be able to show them my artistic side. If not, I am hoping that, soon enough, the staff who do get me will be able to convince my support coordinator and those who agree with her that this is not the right place for me. They have seen a glimpse into what I can be like when I am properly supported and I am cautiously optimistic that they can help me maintain this sense of myself, regardless of what happens when the support coordinator returns from her time off.

Things That Made Me Smile (December 12, 2022) #WeeklySmile

Posted on by Astrid

Hi everyone. I’m joining the Weekly Smile today. Even though I’m trying not to get my hopes up too much about the new day schedule, this also means I enjoy every moment of it.

For those not aware, on Saturday, I started with a new day schedule that is mostly time-organized and allows for me to choose my activities rather than it being activity-based. It is of course still in its test phase and it may actually be torn apart (figureatively speaking) by my support coordinator once she returns from her time off after Christmas. That’s why I’m not getting my hopes up, but also why I enjoy every moment.

The thing that made me smile most about the new day schedule is that it allows for time for me to work with polymer clay with my one-on-one again.

The most smile-worthy event of the weekend is, of course, the creation of my very first unicorn in the new care home! It isn’t my best unicorn ever, but I completely loved crafting it. The staff I created it with, suggested we place it near the Christmas tree, as its mane and tail are in red and green. My fellow clients and staff love it.

In addition to the unicorn, I crafted a koala and an apple out of polymer clay. I also attempted to create a macaron, but decided not to bake that one, as it wasn’t a success.

One of my staff – a staff who can be a bit direct – did ask me how long it took me to craft the unicorn. I struggled not to see this as criticism, as it took me about ninety minutes total, over two sessions, including gathering my supplies and all. He did ask me whether I could craft a panda, as those are his favorite animals. I told him I’d make one for him and did so this evening. This was harder than I thought it’d be, mostly because the black Fimo I used for the panda’s black body parts kept leaving streaks on the white Premo I used for its white body parts. My staff tried to remove them with alcohol, but it remains to be seen how successful this was. Regardless, I enjoyed the process.

What made you smile recently?

#WeekendCoffeeShare (December 10, 2022)

Posted on by Astrid

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.

The Wednesday HodgePodge (December 7, 2022)

Posted on by Astrid

Hi everyone. How are you all doing on this first Wednesday of the last month of 2022? I’m still struggling quite a bit. I might share a bit about this at the end of my post. After all, I’m participating in the Wednesday HodgePodge and the last question allows for us to insert a random thought. Let me get to the first five questions first though.

1. The Hodgepodge lands on National Pearl Harbor Remembrance Day. Have you visited the memorial? Any desire to do so? Have you visited other WW2 sites and memorials? Do you think we do a good job of teaching current and younger generations about the events of WW2? Do you think it matters?
I have never visited the Pearl Hahrbor memorial, as I’m not in the United States. I’m not sure about any other WW2 sites or memorials either. I mean, yeah, I was born in Rotterdam, which was heavily bombed during the German invasion of the Netherlands, and I did see the memorial statue many times. Not sure about any museums if that’s what’s meant.

I do think teaching the younger generations about WW2 matters. I’m not sure how well of a job we do, as I’m not even sure how well-educated I myself am and I’m not considered “younger” anymore by most standards.

2. Many books, both fiction and non-fiction have been written with WW2 as the setting. Is this a ‘genre’ you gravitate towards? Share with us a book (or two) you’ve enjoyed that is set in some way around WW2. If you’re not a reader, how about a movie?
I don’t really gravitate towards this genre, honestly. The only book I can think of off the top of my head is Anne Frank’s diary. I loved it when I was a teen, but didn’t fully comprehend the horrors Anne and her family lived through at the time.

3. According to Better Homes and Gardens Magazine there are seven popular color trends for the holidays this year. They are- red and white, Victorian blue, pops of pink, rich shades of green, rainbow hues, black and white, and nostalgic retro colors. Are you ‘trendy’ when it comes to holiday decorating in 2022? How so? Does your tree have a ‘theme’?
No, I’m not trendy at all. In fact, my staff put up my Christmas decorations that I had left over from last year yesterday because I’d completely forgotten. I don’t even have a tree, as the cheap one I bought last year consumed huge amounts of batteries.

4. What’s a current trend you buck?
I have absolutely no idea what’s even currently trending, so no clue.

5. What’s your favorite chocolate something?
I don’t honestly care for actual chocolate. Give me white chocolate, which isn’t real chocolate, instead. If I have to go with something that has a trace of actual chocolate in it, I’m going with a Knoppers cookie bar. These are chocolate-covered waffles with nut cream inside of them.

6. Insert your own random thought here.
We celebrated St. Nicholas at the care home on Monday. I chose not to join my fellow residents in the living room, but I had my treat and presents in my room. For presents, I had a pair of socks and a chocolate letter. I initially thought I found the socks ugly and, while they are a bit on the large side for me and I wouldn’t personally have bought socks with prints on them, my husband convinced me the colors do look good together. They’re blue socks with tulips in various colors (mostly pink and orange) on them. I also got a little rhyme with my presents, as is customary with St. Nicholas. I liked that best.

Gratitude List (December 3, 2022) #TToT

Posted on by Astrid

Hi everyone. I did a complaint post yesterday and honestly am still feeling like crap, but wallowing in it isn’t going to help. Instead, for this reason, I’m going to write a gratitude list. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful for my husband. He sticks by me through the hard place that is this new care home.

2. I am grateful for my mother-in-law. She tries to stand up for me to the powers-that-be too.

3. I am grateful for my old day activities staff. They visited me on Thursday and we had an extensive lunch together.

4. I am grateful for an opportunity to create another polymer clay flower. And a strawberry. Unfortunately, that having made that morning a relative success, was used by my staff as an opportunity to silence my mother-in-law’s attempt at speaking to the higher-ups.

5. I am grateful for the support of my online friends.

6. I am grateful that my most recent major self-harm episode, early Wednesday, didn’t cause any lasting damage.

7. I am grateful for quetiapine (Seroquel), my PRN medication. It hadn’t been refilled when I had run out of it a while ago, so I was without it when I badly needed it a few times this week. This was one of the reasons I had my major self-harm episode. However, I am so thankful it got refilled.

8. I am grateful for an electric heater. Since my heating broke down, my husband eventually called the care home to tell my staff they had to provide me a way to stay warm until my heating got fixed and they thankfully listened. Unfortunately, it seems the thing broke down as I was typing this post.

9. I am grateful the repair crew came out to fix my heating earlier this evening. Because of the type of heating, it may take up to 24 hours before my room will be comfortably warm though.

10. I am grateful for distractions in the form of books and podcasts and blogs. I may want to dive into the disability activist blogosphere once again, assuming such a thing still exists.

What are you thankful for?

I Complained About the Cold

Posted on by Astrid

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

Posted on by Astrid

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)

Posted on by Astrid

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.