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

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.

What If I Lose My Care?

Today’s prompt for the Weekly Prompts Wednesday Challenge is fear. More specifically, the organizers ask us to consider whether we ever worry about the “what if’s” of a situation without looking at the positive present. Fear, for me, takes many forms, including post-traumatic stress, in which I relive the past. However, it also includes worrying about the future indeed.

Specifically, I worry about losing my support. Of course, this is a realistic worry in a sense, in that my one-on-one support has only been approved until sometime in late 2023. However, right now it’s only May 2022 and a lot could happen between now and then.

This worry also takes unrealistic forms. For example, sometimes I’m convinced that the psychologist from the psychiatric hospital who diagnosed me with dependent personality disorder to “prove” that I was misusing care, will find out that I’m in long-term care and will report me for care fraud. If she does and if the authorities follow along with her allegation, I will not just lose my one-on-one, but all my long-term care and will essentially be required to move back into independent living with my husband.

In a sense, the fact that this “what if” is my worst fear, does prove sort of that I do have dependent traits. However, dependent personality disorder or dependency in general is not the same as misusing care. After all, I never disputed my psychologist’s claim that I wished to be cared for. What I disputed, is her claim that this wish is unfounded, in that I don’t really need this care.

In a similar fashion, recently I’ve had “what if’s” in my head about moving to another care home. What if the staff there expect me to be much more independent than I am right now? In a sense, one reason I want to move to another care home is to have a better quality of life, a broader perspective. This may include greater independence. But I don’t want to be forced into it.

I am reminded of a question on a personality test I had to fill out for my autism re-assessment back in 2017. The agree/disagree statement went something like this: “Being left behind alone is my worst fear.” I didn’t know how to answer it back then, as I thought at the time that being in serious pain would be worse, so I ticked the “Disagree” box. Then again, at the time, I hadn’t experienced significant time being left to my own resources in at least nine years. Now, I would certainly tick the “Agree” box even though I know it was a red flag for dependent personality disorder. I don’t care.

What if I lose all my care and am left to my own resources? During the same assessment, I had to answer a question about how difficult it would be to stay on my own for a couple of days. I ticked the “Very difficult” box, not the “Impossible” box that I would have ticked now. Then again, if my husband had stocked up on food and I had my computer and phone with me, would it literally be impossible? Hmmm, well… emotionally, yes, it would be.

The Wednesday HodgePodge (April 27, 2022)

Hi everyone. It’s King’s Day, so I have the day off from my day activities. This means for me that I don’t have one-on-one support between 1:30 and 4:00PM. This in turn means plenty of time to blog, so I’m aiming for two blog posts today. First, I’m participating in the Wednesday HodgePodge for this week. As the questions went online yesterday and the host participates in the #AtoZChallenge too, her questions are all related to words starting with the letter V. Here goes.

1. What does the word values mean to you personally? Where did your values come from? What are some of the values that have guided you throughout your life?
I discussed some of this yesterday already. Values to me are those abstract qualities that are important in my life. Among my values are authenticity, connection, self-determination and growth.

as for where they came from, I’d like to say I developed them in spite of my upbringing. My parents are very success-minded and more concerned with outward appearance than authenticity. I do think my self-determination comes from my parents though, as they did somewhat raise me to make my own choices.

2. Your favorite vanilla flavored something?
I love everything vanilla really (well, except for vanilla coke, because I can’t stand fizzy drinks), so picking just one is hard. I’m going with ice cream though, yum!

3. What’s something you’ve seen/done recently that you found to be very difficult, very confusing, very helpful, very interesting, or very special. Elaborate.
Deciding to have a discussion with the behavior specialist on the possibility of finding me a more suitable care home. It’s been a very difficult, very confusing time. I thankfully have been able to share my thoughts with most staff, who all have been as supportive as possible.

4. Something you own and love that is violet in color?
I don’t think I own anything that’s specifically violet. I mean, I have a lot of shades of purple in my polymer clay collection, including lilac and translucent lilac, lavender, plum and a couple colors I mixed myself. However, none are exactly violet. I’ve heard it’s one of the harder colors to mix with polymer clay too.

5. Do you have vacation plans on the calendar this summer? Tell us more.
No, I don’t. I was joking around with my husband yesterday about going camping out this summer, but really, we haven’t been on vacation since 2014. I really would like to someday, but I’d go into a hotel then (like we did the last couple of times we went on vacation). My husband is off work for two weeks around my birthday in late June and two more weeks around our wedding anniversary in September. We may plan some extra time together then, but that’s it.

6. Insert your own random thought here.
I just want to share I went on a giant outdoor trampoline this morning. Last year this day, my assigned home staff asked me whether I’d like to go to a playground in a neighboring village that had a giant trampoline and I said yes. I was discussing ways to get out of my room today when I remembered this and so we went again. It was fun!

#WeekendCoffeeShare (April 24, 2022)

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?

Gratitude List (April 23, 2022) #TToT

Hi everyone on this sunny but windy Saturday afternoon. I’m writing a gratitude post once again. As usual, I’m joining Ten Things of Thankful. Here are the things I’ve been grateful for lately.

1. I am grateful for some lovely colors I’ve been able to mix with the Fimo Professional true colors pack I got from my staff last week. I so far mixed a purplish red, a beautiful green and of course the sky blue I already may’ve posted about last week.

2. I am grateful for Chinese takeout food. We went to get Chinese food last Monday. Originally, I’d gotten a little upset about it, because the staff generally default to satay with noodles. However, I talked it over with my assigned staff and we decided to order chicken with pineapple and sweet and sour sauce too. One of my fellow clients was completely delighted.

3. I am grateful for a text conversation with my sister. She’s still doing well with her pregnancy (she’s nearly 37 weeks along), for which I’m grateful too.

4. I am grateful for the support from my staff. I’ve had a rough couple of days this week, but my staff pulled me through.

5. I am grateful I was able to go on the elliptical for the first time in a long while this week. I went on it for only five minutes or so, but that’s the way to get started.

6. I am grateful I am sometimes able to go for slightly longer walks than just a walk around the day center and for several walks during the day now too.

7. I am grateful I did better than expected at my physical therapy this week.

8. I am grateful my husband is supportive of me even when I’m struggling. I am grateful that my husband is trying to help me come up with solutions to the obstacles I face in life.

9. I am grateful I was able to show a temp staff worker and the intern my polymer clay collection yesterday.

10. I am grateful for soothing playlists of nature sounds and instrumental music on Spotify.

11. I am grateful for sunshine. Despite the fact that it’s chilly and windy, I like it that it’s quite sunny.

12. I am grateful that, despite Easter and all the “bad” food I had over the past couple of weeks, I’m still just plain overweight rather than obese. I am actually at the same weight I was two weeks ago. This is not an excuse to continue having “bad” treats, of course.

That was a better gratitude list than I expected. I initially struggled to get to ten and now I got to twelve, which should be another reason to be grateful, yay!

What are you grateful for?

Five Things I Take for Granted #5Things

Yesterday, DrTanya’s topic for the #5Things challenge was things you (sometimes) take for granted. I realize I take a lot of things for granted that I really shouldn’t. Here are just five.

1. My intelligence. I don’t take it as much for granted as I used to when in school, but i still feel that I pretty much consider my high IQ a given. Not only that, but I usually find that I’m surprised when others aren’t as intellectually capable as I am. Of course, I don’t mean my fellow clients at the care facility. In fact, they have taught me quite a lesson in humility.

2. My access to medical care. I don’t take my access to long-term care for granted, because that was a fight, but my basic health insurance coverage, I certainly do take for granted. Of course, it is mandatory here in the Netherlands and even those who don’t pay their premiums can’t be refused insurance for at least six months while the insurance company tries to sort things out with them.

3. A roof over my head. I’ve never been without shelter, although in a sense I’ve often felt “homeless”. In the psychiatric hospital, I knew several ppatients who had no home other than the hospital and who were regularly suspended from the ward into the homeless shelter. In this sense, it is really surprising that I never even considered this would happen to me, since I too for several years had no home other than the hospital. I think this signals how secure I felt, in a sense, at the ward I resided at back then.

4. Electricity. I never had to pay my own electricity bills, at least not directly. I mean, even when my husband and I lived together, my husband paid the electricity bills. As a result, I’m hardly aware of how much energy really costs. My husband did tell me how well we did compared to other households and we were always relatively frugal. Even so, it all seems a bit abstract to me.

5. Access to a computer. I don’t take Internet access for granted, but access to a computer, I certainly do. Even in my early days at the locked psychiatric ward, I had my laptop with me and there was no way anyone could take it from me, regardless of what the rules said about only certain electronics being permitted. Thankfully, my nursing staff did understand.

What things do you take for granted?

A Letter to Myself Five Years Ago

Today, I stumbled upon a journaling prompt that asked me to write a letter to myself five years ago. I’m pretty sure I’ve done something similar to this at least a couple of times before. In fact, when I searched this blog for letters, I saw that I’d written A letter explaining my life at the time in early 2020, a letter to my younger self in general in October of 2018 and even a letter from my (then) future self in 2019.

Those who know the timeline of my life, of course, will not be surprised that I am going to pick this prompt anyway, as the “five years ago” part of the prompt is particularly significant. After all, it was weeks before I’d be kicked out of the mental hospital. I am not going to bore you with a timeline of the past five years in this letter. Instead, I’m trying to provide some new insights.

Raalte, March 27, 2022

Dear Astrid,

It is tempting to start this letter with a cliché, such as, “How are you?” However, I know how you are. You are struggling greatly with self-doubt and uncertainty. Fear of abandonment and attachment loss. You’d rather avoid taking the next step in your life, leaving the familiar behind to step into unfamiliar territory. Even though you’d rather not admit it, your psychologist is right that you’re scared of needing to become independent.

I want to let you know I understand. Independence is scary. The unfamiliar, leaving the psychiatric institution to go live with your husband, is even scarier. I understand you’d rather stay with unsupportive people you know, ie. in the psych hospital, than live with a supportive person, ie. your husband, under circumstances you don’t know.

And, to be honest, if I had a choice back when I was you, I’d not have chosen to live with my husband. The thing is, you don’t have a choice. Not yet. But you will, at some point.

Please, for my sake, hold on for a bit. Do what your psychologist tells you, but also stand up for your right to proper day activities and community support. It will be hard, living in the community with your husband. But things will get easier.

I am writing from a care facility. In 2019, I was approved for long-term care based on blindness. I also have extra one-on-one support. Please don’t tell your psychologist all of this, as she’s going to time travel right ahead to me and make sure my funding gets taken away. This is just between you and me, so that you know things will improve. I know they will get worse first, but please do hold on.

Looking to you, I do see that you struggle to let go of the familiar, even when it isn’t good for you. I sometimes think I face the opposite issue, chasing perfection rather than being content with what I have now. It’s a true balancing act.

I also want to let you know that, as much as you’d like to make your own choices, being allowed to make those choices also can be a burden. The fact that, now, I am free to stay in the care facility for as long as I want or leave when I want, is quite scary, I must admit. In that sense, your psychologist was probably right about my dependent personality disorder features.

I wish I could tell you that your attachment issues would be over by now. They aren’t. I’m still struggling with them, worse even than I was when I was you. However, I do have a supportive mental health treatment team now,for which I’m forever grateful.

In summary, please do believe in yourself. You have every right to feel that you need more support than your psychologist says you need. You just won’t get it yet. Eventually though, you will.

With love,

Your future self

Joy in March

Hi all. It’s time to reflect on my one word for this year again. I am joining the Word of the Year linky, as well as Lisa’s One Word linky. As those who’ve visited me in January or February will know, my word for this year is JOY.

I had quite a few moments of pure joy this past month. Being able to go outside without a jacket for the first time this year, for example. I loved the beautiful weather! I also loved being able to take beautiful flower photos, especially when I could snap them myself.

In the creative area, I’ve struggled to find pure joy. I mean, I’ve been frustrated by a need to be productive rather than merely enjoy my creative process. As such, I’ve often been tempted to get discouraged and, as a result, give up too quickly. This is the case with my macrame, of course, but also with my polymer clay. When I felt I couldn’t take my work to the next level, I would rather easily let it go completely instead of enjoying the craft.

An area in which I’ve done really well with respect to finding joy, is food. Two weeks ago, the dietitian had me and my staff do a mindful eating exercise. We were given a slice of a tangerine in a bowl and first had to merely look at it while pretending we were astronauts stranded on a faraway planet. Then, we could touch it, smell it, lay it on our lips and finally take a tiny bite. All the while, we had to rate how edible we considered this food, given that this was alien food so we had no idea what it was. Once we had taken the tiny bite, we were supposed to wait for how long it’d take for the taste to completely leave our mouths.

The point of the exercise is, of course, that, as a recovering bulimic, I am still tempted to eat, say, a bag of candies all one after the other without even tasting them. The idea of this exercise is to counter this by actually being aware of every little bite or piece of candy and its feel, taste, etc. I have since been quite able to implement this when having treats.

I also have been able to enjoy my marriage more. I am less plagued by thoughts that my husband will leave me than I was some months and certainly years ago. I try to truly, fully focus on my husband when we talk on the phone in the evening. It’s still hard, because I either am losing my hearing or my headphones are failing. Thankfully, I’m going to Lobith again tomorrow, so will be visiting my husband in real life again. It’s been a while!

How have you been doing with your word for 2022?

The Wednesday HodgePodge (March 23, 2022)

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.

Joy in February

Last month, I shared my one word for 2022: JOY. Today, I want to share an update on how I’ve been doing with this one word. I am joining the Word of the Year link-up, which I didn’t join in with last month (because I didn’t see it on time to join in), as well as Lisa’s One Word linky.

Overall, I’ve been doing pretty well remembering my word for the year and seeking joy in the ordinary moments. I didn’t experience any mind-blowingly delightful moments, but I did enjoy the everyday.

In particular, what I’m happy about, is that I found joy in the treats I could have every now and again now that I’m on a healthy food plan and don’t allow myself to indulge in whatever I please. Now that I have COVID, I’ve ditched the diet and am more or less allowing myself to eat what I want, but I’m still not overeating, thankfully. I mean, I have a bag of licorice on my table (under the guise of it helping with sore throat, which I don’t even have right now), which I could’ve eaten all in one sitting had I not been mindful. Instead, I am truly savoring each sweet.

I also enjoyed my creative hobbies quite a bit over the past month. Though in this respect, I still look to improve myself, I can still find joy in the mere act of creating. Earlier this week, I found intense joy in my first polymer clay color mixing experiment.

Because I sometimes struggle to find the energy to start “larger” activities such as polymer clay, I also asked my day activities staff about some easier to get started activities. She brought me a simple game with a board and insertable small pieces in different colors. I have been enjoying doing this activity with my staff or alone.

Lastly, I didn’t see my husband a lot over the past month, but I did enjoy speaking to him on the phone and texting him everyday. I obviously won’t say that seeing him less made me appreciate his visits more, as I wish we could have seen each other each week. However, it definitely was a lesson in enjoying the ordinary and delighting in the extraordinary.

Finally, both my husband and mother-in-law have been very sympathetic now that they know I have COVID. I am truly grateful for both of their thoughtful text messages. I also was positively surprised to get a call from my sister as soon as I posted about my positive COVID test on Facebook early Wednesday morning. You might think that the fact that I was surprised, means I view her negatively, as I assume most people expect their family to sympathize when they have COVID. While I admit this is in part true, I also think I shouldn’t take sympathy for granted.