Reminders When I’m Feeling Like Life Is Pointless

Posted on by Astrid

Hi everyone. Like I said on Saturday, I’ve been struggling lately. It’s been so bad that I’ve actually been considering talking to my doctor about options for medication. I mean, I’ve been tapering my antipsychotic aripiprazole (Abilify), which is sometimes used as adjuvant medication to treat depression. However, I honestly struggled with mild depression already before starting my taper.

That being said, I really need to remind myself of the things I have in life. For this reason, I started a list of positives and negatives for each day that I’ll send to my second assigned staff weekly. She is more socially adept and empathetic than my other assigned staff, which is why I have her to discuss my personal issues with. Anyway, I allow myself to list the negatives too, which sometimes outweigh the positives, but the last few days, the positives have outnumbered the negatives.

For instance, today I had as a positive the fact that I finished a pair of polymer clay earrings. Okay, I haven’t yet seen how they turned out, but who cares? The process is more important than the outcome. I also listed as a positive the fact that I had a good online meeting with the regional branch of CP Netherlands, the Dutch cerebral palsy alliance.

I listed one negative, ie. the fact that I got slightly stressed out when my male assigned staff asked me some questions about swimming. I’m supposed to go swimming in a group on Thursdays but this hasn’t happened yet due to staffing issues. I have tried to jump through all kinds of hoops to accommodate the staff and felt like I was being pushed around. Thankfully, tomorrow (Wednesday), it turns out, I’m allowed to try out swimming with my fellow clients.

I think that, when I’m in a downward spiral and particularly when I feel like my world is becoming smaller and smaller and life is pointless, I need to remind myself that there are still lots of things I can do even though I’m at home a lot. I could read, watch YouTube videos, blog, scroll on social media, do all kinds of crafts. Honestly, in fact, when a staff is entertaining, even a dice game can be enjoyable. And the entertaining factor is a two-way street. After all, I noticed this with a staff yesterday with whom I hadn’t gotten along a few weeks back. He was about as unengaging as could be and left 15 minutes early, but then again I treated him badly first by refusing to explain my routine because “it’s not my job to train temp workers”. It isn’t, technically speaking, but I could’ve been kinder. Yesterday, he actually made our game of Yahtzee fun.

I do still think my world could be enriched. I also feel this isn’t a cure-all for my depressed mood. Some of it comes down to grief, too. Grief for having lost the support I had in late 2021, when I was 95% sure I wanted to stay in Raalte. “Make that 98% please,” the manager said. Not even half a year later, it turned out, either she or some other people involved there were glad I was asking to leave. That angers and saddens me to this day, but wallowing in these feelings won’t help. Involving myself in positive activities might.

I’m joining #WWWhimsy.

Choice of Residence

Posted on by Astrid

Hi everyone. Today’s topic for Sunday Poser is how or why you chose your city, county or area of residence, or whether it was a choice at all.

I stumbled across my current care agency by chance in 2017 when trying to find day activities for once I’d be discharged from the psych hospital. After going to two different day centers with this agency and coming to the conclusion that living semi-independently with my spouse was not a viable option in the long run, I moved into the home that had a place available at the time. That’s the short version of how I ended up in Raalte.

Since knowing about this agency, I always envisioned myself living on its institution grounds. I thought I’d feel more sheltered there. This was one of many reasons I requested to look into the possibility of finding me another care home in April of 2022.

Wilp, the institution town (I’m pretty sure I mentioned it before so I might as well tell you rather than remaining vague) is right in the middle of the tricities Apeldoorn/Zutphen/Deventer. I think the town itself has a little too little to offer for my liking, since it only has a bakery and a coffee corner and that’s basically it. However, all three cities are within easy driving distance and Twello, the neighboring town, is within cycling distance. It’s too bad our home doesn’t have a side-by-side bike.

Since I grew up in Apeldoorn, I am sort of familiar with this area. Not in the sense of knowing my way around – I’d never even heard of Wilp before finding out about this care agency -, but in the sense of knowing the culture. It’s not necessarily my type of culture – a bit too conservative for my liking -, but I am okay with it.

The institution I live in is great. No, not the home, of course, but I love the petting zoo, on-site swimming pool, various day centers, etc. The fact that residents and staff all greet each other, is also awesome. It’s really like a small village in itself. And indeed, it’s more sheltered than community living in Raalte was. One drawback I need to mention though is getting mail delivered. Particularly packages cant be sent here. Ah well, I’ll get them sent to my in-laws and get my spouse to collect them and bring them here on Sundays.

Between War and Peace

Posted on by Astrid

The stories we hear
Of war and peace
May cause us concern
Or relief
And yet
Reality
Is most often
Something inbetween

When orienting at the prospective new care home last Wednesday, a resident started talking unquietly about the war in Ukraine. She was quickly calmed by a staff, in as simple words as possible, suited to her intellectual capabilities.

That night, I heard an airplane or a helicopter fly by very low over my current home. I thought, perhaps influenced by the woman in the other home, that it was a jet fighter. “Are we going to war now?”, I asked the night staff when she responded to my call button. She put my mind at peace, saying someone had probably booked a night-time helicopter flight over Raalte. I took her story at face value and went to sleep.

The next morning, I found out that both of our stories are probably equally unlikely and reality was something inbetween: the helicopter had been called in a medical emergency to resuscitate a baby. Thankfully, the baby survived.

This post was written for Friday Writings, for which the optional theme this week is war and peace.

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.

Things I Love About Raalte

Posted on by Astrid

One of Mama Kat’s writing prompts this week is to share seven things you love about your hometown. When filling out my Facebook profile some years back, I was made aware that my “hometown” was supposed to be the place I was born in. That would be Rotterdam. Then my current city would be the place I now live. That is Raalte now.

For the purposes of this Writer’s Workshop, I am writing about things I love about Raalte. After all, it’s been over 25 years since I left Rotterdam. I don’t really consider Raalte my “home” place at this point yet, but then again there’s no other place I call home.

Raalte is a town of about 20,000 residents in the middle of the province of Overijssel in the eastern Netherlands. It is midway between the cities of Deventer, Zwolle and Almelo, but each of these is about 25-30 km away. Raalte, for this reason, relies mostly upon itself. There are neighboring villages that also belong to the municipality of Raalte but are quite rural. Anyway, here are the things I love about Raalte.

1. Its nature. Raalte is a relatively green town with its parks and the canal. My care facility, too, is close to the countryside.

2. My neighborhood. I live in a quiet neighborhood where I love to go on walks. Like I said above, it’s close to the countryside too.

3. Its restaurants. I love that Raalte has quite a few restaurants. Of course, now they’re mostly closed due to the lockdown, but they still deliver food.

4. The other facilities in town. Raalte has its own train station, though I’ve never used it. It also has several supermarkets, one of which is in my neighborhood. The town center has lots of little and not-so-little shops.

5. The fact that it has its own healthcare facilities. Okay, it doesn’t have a hospital, but there is an outpatient clinic from Deventer Hospital in my neighborhood. We also have a GP surgery in my neighborhood and the mental health agency is downtown. When I lived in the tiny village with my husband, I had to travel about 7km to get to the GP. Compared to that, Raalte’s healthcare facilities are pretty good.

6. The government-funded taxi service for the disabled. Raalte’s public transportation system is practically nonexistent, but thankfully I was able to get a taxi pass to get around the area. It can take me to Deventer and Zwolle, as well as within Raalte and to the neighboring villages. Unfortunately, the default budget isn’t as large as it was in my old village. Then again, right now, I don’t use the taxi service at all due to the lockdown and the fact that my staff usually take me places.

7. The dialect. When I was about to move here, my husband warned me that people in Raalte talk even weirder than those in my old village did. Indeed, most have quite a rural accent, but I really like it.

Overall, if I had the choice, I’d like to live in a town closer to large cities. That being said, I don’t want to ever live in a large city like Rotterdam again. Besides, compared to my old village, Raalte has exactly the right mix of town and rural area.

Mama’s Losin’ It