#WeekendCoffeeShare (January 8, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today, even though I already had my last cup of coffee for the day. I’m going to have a glass of water with my evening meds probably while in the middle of this post. Want a drink too? Maybe I can convince the staff to get you a diet soda. I can’t stand them myself and we rarely have Dubbelfrisss, my favorite drink that isn’t water, coffee or green tea, here. Anyway, let’s (pretend to) have a drink and let’s catch up.

If we were having coffee, I’d tell you that my New Year’s went okay. I went to Lobith. Like I think I mentioned, my husband ordered a waffle maker, so that we could have our own, homemade waffles. Not all turned out as they should, but we had enough of the ones that did turn out good. We spent the evening on the couch watching semi-random YouTube videos, as neither of us wanted to watch the annual New Year’s comedy performance. According to my husband, YouTube decided what we were watching, as he probably had autoplay on. By 11:30PM, both of us were too tired to wait for the clock to strike midnight and we didn’t fancy neighbors coming by to greet us either, so we went to bed.

If we were having coffee, I would share that the first week of the new year has been hard. The home has been short-staffed and many of my fellow residents have been struggling with post-holiday dysregulation. For these reasons and probably others, I am experiencing a lot of disruptions to my care again. I have had quite a few meltdowns lately. I haven’t been as severely self-harming as I was back in late October and November, but quite honestly I’m feeling almost as desperate and the only reason I’m not feeling exactly as desperate is the fact that at least on paper my care is still kind of okay.

If we were having coffee, lastly I would share that my youngest sister-in-law turned 30 yesterday. I am thankful I was able to craft a polymer clay horse for her. Well, not anything like an actual, anatomically correct horse; really just a unicorn like the ones I usually craft but without a horn. My sister-in-law’s real, living horse is called Wolympia, so I called the polymer clay one Polympia. Sadly, I forgot to take a picture before giving it to my husband to give to her.

How have you been?

The Wednesday HodgePodge (December 28, 2022)

Posted on by Astrid

Hi everyone. It’s the last Wednesday of 2022, so I’m joining Joyce for the Wednesday HodgePodge. Here goes.

1. Did you set any goals for the new year this time last year? Did you meet them or miss the mark? Tell us more if you’re comfortable sharing.
I don’t set goals. Instead, I call them hopes. That removes the pressure, but they’re pretty much the same. I shared my hopes for 2022 on January 1. For the most part, I sort of reached them early on but completely started falling off course after the move to my current care home. I’m slowly getting back on track.

2. What are three words that might describe the kind of person you were this past year or describe in some way how your life looked?
Transition, stress, creativity.

3. What’s something new you ate, saw, heard, or experienced in 2022? What did you think?
This year was a massively transitional year, since I experienced the move to what I thought would be my dream care home but initially turned into a nightmare. It’s slowly starting to get better though. As a result, I experienced many new things. A tiny one is the fact that I ate mash for the first time in a looong while.

4. Oxford Dictionary has announced it’s word of the year for 2022, and it’s this-goblin mode. Huh? Have you ever heard this phrase? Used this phrase?
No, never heard of it until now. Consequently, I have no idea what it means and honestly don’t know whether I want to know. Oh wait, no, I don’t want to find out, as I just saw that Joyce had the definition written out and I skipped over it. Or maybe now I do want to find out.

If you were in charge, what word would you declare word of the year for 2022?
Russification, if that’s a word in English too (it is in Dutch). We need to be aware of what’s happening in Ukraine and especially the parts of it completely under Russian control, like Mariupol.

5. Any special plans for an end of year celebration in your house or town? The travel channel says the world’s best New Year’s Eve celebrations will happen in Copacabana Beach-Rio de Janeiro, the Orlando theme parks in Florida, London, Sydney, New York’s Time Square, Edinburgh Scotland, and Paris. If you could attend any one of these which would you choose? Tell us why?
I will be going to Lobith for New Year’s . My husband just ordered a waffle maker online so that we can make waffles then. He also said he bought Airfryer snacks.

If I had to choose any of these destinations to visit during New Year’s, it’d be Sydney because it’s summer there right now. Then again, I don’t have any desire to visit there otherwise. I would like to go to Edinburgh someday, but not in winter.

6. Insert your own random thought here.
I’m probably going to end the year on a positive note, as my support coordinator returned from her vacation yesterday and did part of my one-on-one this evening. That’s not the positive news. The positive news is the fact that she said my day schedule is good as it is.

#WeekendCoffeeShare (June 11, 2022)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again today. Grab a cup of coffee, herbal tea or I could even make you strawberry infused water, since I bought some strawberries at the supermarket yesterday and I still have a water bottle with a fruit infusion thingy that I got for my birthday two years ago and hardly even ever use. I guess I’m going to make some for myself now, so be right back. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d ask about your weather. Ours has been mixed this past week. Early in the week, it was quite chilly and rainy, but today we’re having sunny weather and daytime temperatures of up to 22°C. It’s a little windy, but still lovely!

If we were having coffee, I would share that the orthopedic shoemaker came by on Tuesday to do the final tweaking to my right semi-orthopedic shoe. It’s now fine or so it seems, but the left one, the one with the ankle-foot orthosis in it, is now giving me issues again. I don’t get blisters, but it does feel as though I’m getting slight pressure where the edge of the AFO touches my foot. To be honest, I am currently undecided as to which shoes I like better: my regular shoes or the semi-orthopedic shoes with the AFO. Neither is giving me the comfort I’d like and I’ve more or less lost my walking mojo altogether.

If we were having coffee, I would tell you that I’ve been experimenting with methods of trying to make the perfect polymer clay earrings all week. I haven’t found the perfect method yet, but today’s would-be earrings are at least better than Thursday’s, which were so curved that I threw them in the trash.

If we were having coffee, lastly I’d share that I’ve been making plans for my birthday with my parents, husband and mother-in-law. I initially invited my parents to the care facility, but, after talking it over with my husband, decided it’s better to invite them to Lobith. They will be there on the 25th (my birthday is on the 27th). My husband suggested we eat at a Cuban restaurant called “De Revolutie” (“The Revolution”). I love Latin American food, so that’s awesome. Besides, my parents are quite outspoken leftists, so I bet they can appreciate it.

Then the next day we’ll pay a visit to my mother-in-law (my father-in-law will be on vacation then). I haven’t yet decided whether to do anything special on the 27th itself. I actually have a nurse practitioner’s appt on that day and, since my appt this week got canceled too, I really don’t want to cancel. My staff suggested going out for lunch afterwards, so that’s an idea.

How have you been?

Making Up My Mind: Why I Want to Live in an Institution

Posted on by Astrid

Last week, the behavior specialist for my care home came by for a visit to discuss my housing profile. This is the thing with my wants and needs with respect to a new prospective care home on it. I initially wasn’t too picky, saying for example that I would most like to live on institution grounds but if that isn’t possible, a quiet neighborhood home would do too. Then when I talked to my husband, he said that an integrated neighborhood doesn’t get much quieter than my current neighborhood in Raalte. He also told me I don’t need to make compromises about where I want to live as of yet, since I will be looking to stay in my prospective new home for the rest of my life.

The reason I initially compromised about living on institution grounds, is that my current care agency has only one such institution and that one at least wasn’t admitting new clients back in 2019. I’m not sure about right now or whether not admitting new clients means they aren’t keeping a wait list either. However, I was wary of contacting other agencies due to the bureaucracies involved. Then my husband said though that this shouldn’t be something for me to worry about.

Eventually, after talking about it with my assigned home staff, my husband and my mother-in-law, I decided to make up my mind about my wishes for the housing profile. I said I’d really like to be looking at institutions.

This does mean I had to drop my objection against contacting external agencies. I offered two agencies we could contact other than my current one. One has an institution in Apeldoorn, the city I grew up in, and another in a small town elsewhere in Gelderland, about a 45-minute drive from Lobith, where my husband lives. For reference: Raalte is about a 75-minute drive from Lobith and I did agree with my husband that I won’t be looking at care homes that are farther away. The other agency has an institution near Apeldoorn and one near Nijmegen. I’m not sure the one near Nijmegen was acceptable distance-wise to my husband, but the one near Apeldoorn certainly was.

Both agencies are unlikely to refuse to consider me based on my IQ alone, even though both primarily serve people with intellectual disability. The reason I think so is that both also serve other populations and I have some experience with both agencies.

I do feel all kinds of feelings about the fact that I’ve made up my mind. For one thing, I do feel some form of shame about wishing to live on institution grounds. Back in 2006 and 2007, I wrote agitated articles about the fact that deinstitutionalization was said not to be working by some non-disabled advocates for the disabled, claiming it was poor care, not community living, that was at fault. I meant, for example, the fact that people in the community need more support to go outside if, for example, they aren’t safe in traffic, than they would need in institutions. Then, if that support isn’t provided, it’s no wonder they’d rather go back to living in the woods.

Now one of the reasons I want to go into an institution is the fact that I don’t feel safe leaving my home and the only way of preventing me from leaving it anyway is locking me up. Now tell me again you want the least restrictive environment.

Another feeling has to do with the institution in Apeldoorn specifically. My family home was quite close by that institution. So close in fact that I remember one day when I was eighteen, having an encounter with the police and being asked whether I’d run away from there. I know my parents would feel intense shame if I moved there. Then again, they probably feel intense shame at the fact that I live with people with intellectual disabilities already. Besides, who cares what my parents think?

I do have a few things I need to consider when looking at external agencies. For example, my current agency provides free, pretty much unrestricted WiFi in all rooms of all its homes and it’s available to clients if they wish to use it, which I do. I am not sure the other agencies do, but I will inquire about this when the need arises.

#WeekendCoffeeShare (April 24, 2022)

Posted on by Astrid

Hi everyone on this last Sunday afternoon of April. Can you believe that we’ll be in May this time next week already? I certainly can’t. The weather’s okay: sunny and about 16°C. I can’t wait for higher temperatures though. Anyway, I’m joining #WeekendCoffeeShare today. I haven’t had my afternoon coffee yet, but am likely going to take a break while writing this post to have it. You can have a cup as well. The staff are also trying to get me to try some type of drink that sounds much like what Americans call Kool-Aid: a powdered substance (sugar-free or so I’m told) that you add to cold water and that then creates the flavor of juice. I’m pretty sure I’d prefer plain water though. Anyway, we have this stuff in the apple-flavored variety, so if you’d like a drink of that, get yourself one. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week, I’ve been experiencing quite the rollercoaster ride of emotions. Due to a number of triggers, I got to doubt once again whether I want to stay in my current care home forever and, on Thursday, I more or less decided that I at least want to discuss the possibility of looking for another place. I have no idea whether a voluntary move is even possible and it’s certainly not something I’m looking to decide on quickly. My assigned home staff E-mailed the behavior specialist and manager to see if they can discuss the possibilities and process with me.

If we were having coffee, I’d share that I also experienced quite a bit of emotional dysregulation recently. I am having some major flashbacks and identity confusion. It looks like a new factive alter (an alter based on a real, outside person) may have formed recently.

If we were having coffee, I’d tell you that tomorrow, I’ll finally be discussing lowering my antipsychotic dosage with my nurse practitioner. I’ll most likely take the first step sometime in early May. Even though I’m not feeling at my best right now, I want to move forward with it.

If we were having coffee, I would share that I did enjoy doing some polymer clay work recently. Mostly, I just mixed colors. Like I said before, last week, I got the Fimo Professional true colors six-pack, which comes with a mixing chart, from the day center. I love it! My mother has her birthday on Thursday and I’m fully intending on making her a tulip out of polymer clay with all colors I mixed myself.

If we were having coffee, lastly I’d share that I went to Lobith yesterday. It was good being with my husband once again. We got Domino’s pizza and had orange tompouces (a Dutch-specific pastry) in honor of King’s Day on Wednesday. This morning, my husband went out to the local bakery to buy us croissants. Yum!

How have you been?

The Wednesday HodgePodge (March 23, 2022)

Posted on by Astrid

It’s Wednesday and I’m joining the Wednesday HodgePodge again. In honor of daylight saving time, I think, the questions this week revolve around the topic of “time”. Here goes.

1. What’s something you never seem to have enough time for?
Blogging. I usually write my blog posts at the end of the day, because I need enough alone time to be able to compose a blog post and I don’t have long chunks of alone time during the day. That being said, the issue probably isn’t that I don’t have enough time, but that I don’t allow myself enough time to start on a blog post if I don’t have time to finish it within that chunk of alone time. Right now, I changed that by starting my blog post in the staff’s lunch break and now I’m finishing it between day activities and my evening one-on-one coming on.

2. If you could turn back time and relive just one day in your life, which day would you choose and why?
This is such an interesting question. Like Joyce, I believe there already is a perfect timekeeper of the universe, ie. God, and to interrupt His timekeeping would not just be impossible, but if it were possible, would lead to disastrous results. That being said, in the hypothetical event that turning back time and reliving one day of my life would not alter the rest of it, I would choose the day of my wedding in 2011.

3. Something you enjoy making that takes a long time to prepare/cook?
I’m assuming we’re talking just food here, since there’s a reference to cooking. For me, cooking even relatively “simple” meals takes up a lot of time. When I still cooked independently, it used to take me at least 90 minutes to prepare and cook a standard macaroni, for example. After all, I needed to do a lot of organizing before I could even get started and I’m a slow cook too. For this reason, I don’t think there’s anything I really enjoy making that would take other people a lot of time to prepare or cook. In fact, now that I get help on the rare occasion that I do cook, I still prefer to make relatively simple meals. The pilaf I cooked last week was really the most time-consuming dish I’ve cooked so far since moving into the care facility.

4. A time recently where you needed/gave yourself a ‘time out’? How do you do that?
I don’t like resting during the day, even though I need to at times. When I had COVID last month, I really had to force myself to lie in bed. Taking time-outs usually involves resting in bed with my weighted blanket over me and my stuffed animals near me, listening to soothing instrumental music through my music pillow and with an essential oil blend in my diffuser.

5. Something you’ve done recently that you’d describe as a ‘good time’?
Yesterday, my mother-in-law came by for a visit. We went for a walk and a coffee and pie in a nearby town. The pies were too sweet for our liking, but the coffee was okay and at least we had a good time enjoying each other’s company.

6. Insert your own random thought here.
This coming Saturday, if I don’t get a cold from one of the several staff who have been working here with cold symptoms (they tested negative for COVID, of course), I’ll be taking a ParaTransit taxi to my and my husband’s house in Lobith. If I do get a cold, I will most likely stay at the care facility and will certainly not take the taxi. Though all mandatory COVID-related restrictions and requirements were lifted today, I still don’t want to infect anyone. Let’s just hope I won’t get a cold, as I’m really looking forward to spending time in Lobith again.