Saying Goodbye to Mental Health Services

Hi everyone. October 10 is World Mental Health Day. In honor of this, many bloggers are writing about mental health this week. As a person with serious mental health challenges, I think I need to offer up my contribution too. However, mine will be a bit different, in that just last Tuesday I had my for now final appointment with a professional from a mental health service.

I did not usually share details of my less than stellar experiences with my psychiatric nurse practitioner on the blog, but let me say that my appointments, except for those concerning medication, over the past three years, have for the most part been useless. Maybe my expectations of an assertive community treatment team were too high. For those who don’t know, an assertive community treatment team is an outreach-based team that treats the most severely mentally ill, usually care-avoidant patients. As a result, a lot of the care they do is more like support and steering towards services than actual therapy. They do have a psychologist on the team, but the majority of clinicians are actually community psychiatric nurses.

Back when I got kicked out of the psych hospital in 2017, I did need such a team, as I needed lots of support in my daily life. However, once I’d moved into long-term care, maybe an assertive community treatment team wasn’t the most logical choice of treatment teams. And yet that’s where I ended up.

Not to say it’s all my or my referring agency’s fault. My nurse practitioner did flat out refuse to refer me anywhere else even when he should have realized he couldn’t provide the kind of treatment I needed. He also claimed we were doing “trauma treatment” by merely talking over my mental health struggles, which happen to be trauma-related, occasionally. In my opinion, it was neither specifically trauma-focused nor treatment.

Now I know that my staff and the behavior specialist at the care home are probably as capable as my mental health professionals were at helping me deal with my everyday instability. Neither can provide trauma-focused therapy, while both can provide a listening ear (my staff at my old care home at least often better than my nurse practitioner, in fact).

I did, of course, start my topiramate and pregabalin while in treatment with my now former mental health team. This I do credit the team’s psychiatrist hugely for. I don’t honestly think an intellectual disability physician would’ve been able to come up with this idea and I’m not sure a consulting psychiatrist would’ve gotten the idea either. Then again, now that I’m on a stable dose of both meds and only wanting to slowly decrease my aripiprazole, my agency’s intellectual disability physician can manage that.

All this combined got me to conclude that I don’t think I want mental health services anymore. If I or any of my current professionals ever change our minds, I can always get referred back to a mental health agency.

I Give In: Following My Heart to My New Care Home #31Days2022

Hi everyone. The optional prompt for day 2 in the 31-day writing challenge is “give”. Again, this is a bit of a freewrite as I prepare for the move to my new care home on Wednesday.

You see, when I originally moved to my current care home in 2019, it was the first place that wanted me. I also had some rather odd preconceived ideas about the kind of place I needed to be in to get my needs met. I thought that, in order to get a high staff/client ratio, you needed to be in a home for severely or profoundly intellectually disabled people. After all, places I’d known before in the psychiatric system, had a much lower staff/client ratio and so did so-called “supported housing” facilities for those with milder intellectual disabilities. (I did already know that I wanted to be in a place for people with intellectual disability rather than mental illness even though I’m not intellectually disabled, because the intellectual disability services approach is far less training-focused than that on the mentally ill.) At the back of my mind, I did know about a few homes on the care agency’s main institution grounds that catered towards those with mild or moderate intellectual disability with severe challenging behavior, but I couldn’t get the right “care profile” (on which your funding is based) for that. Not at the time, at least.

So I accepted the room at my current care home. It didn’t feel that good right from the start, but what else could I do? I was hardly getting by living with my husband. And, indeed, I don’t know what I’d have done had I had to survive lockdown while living independently. Unsuitable as this home may’ve been, it was a much-needed step on my journey.

Once I lived in my current care home, where all my fellow residents have profound intellectual disability, it became apparent pretty quickly that I needed more intensive behavior-related support than my care profile would allow for. I was first very scared when I heard that my support coordinator was applying for the highest care profile – the one I would’ve needed for the homes still at the back of my mind. After all, at first, my funding had been denied altogether. Not just the highest care profile – any long-term care funding. Were they going to re-assess me all over again? It turned out not: either I’d get the higher care profile or I’d remain in the lower category, but my funding couldn’t be taken away. Within a month, we heard the good news that my funding got upped to the highest care profile. Five months later, my additional one-on-one support got approved.

Still, I didn’t dare give in to my wish to move to one of the “intensive support” homes on main institution grounds. Not consciously, at least. When no-one was looking, I did look all over the care agency’s website to see the descriptions of their homes, all while saying I didn’t want to move.

In fact, at my care plan review last year, I said I was 95% sure I wanted to stay here and those other 5% were because of the distance to my husband. My husband said I needn’t worry, as it’s not like there are dozens of places for me to choose from. Then again, I don’t need dozens to choose from.

The home I’m moving to on Wednesday, is again the first home that wants me. However, it is also the home that stood out to me on those searches on the care agency website. It is most certainly not perfect – I know that before I’ve even moved in. However, I have my hopes up that I won’t regret having given in to following my heart.

The Wednesday HodgePodge (September 7, 2022)

Hi everyone. It’s Wednesday again, so it’s time for the Wednesday HodgePodge. Here are Joyce’s questions and my answers.

1. Tell us a little bit about the best birthday you’ve ever had.
I honestly can’t decide on any specific one. Birthdays were always stressful when I was a child, but they’ve gotten easier as I got older. Now that I think of it, I’m going to pick last year’s, my 35th, because it wasn’t as loaded as the ones before and I got some of the loveliest presents.

2. In what way(s) have you changed in the last five years?
Five years ago, I was struggling greatly living with my husband. I had already had my first major mental crisis, but not my second or third and I was still trying to uphold the image of myself as the successful psych survivor. As such, the most important way in which I’ve changed over the past five years, is having learned to embrace myself with all my limitations, rather than wanting to prove my capabilities to the world. It’s a delicate balancing act and sometimes I wonder if I’ve swung too far to the dependent side of things. I’m trying to reclaim some of my fierce self-reliance indeed, without losing the self-determination I didn’t have five years ago. For those who don’t know, living with my husband rather than in a care facility wasn’t my choice; instead, I had been kicked out of a psych hospital in May of 2017 for allegedly misusing care. I am so glad my community support team and I eventually came to the conclusion that I needed to be in long-term care after all. Now I need to find the balance between passive dependency and stubborn self-reliance.

3. What’s your favorite thing about the street on which you live?
The fact that the care facility is right at the end of the street, overseeing the meadow, so it’s relatively quiet.

4. The Hodgepodge lands on National Beer Day…are you a beer drinker? What’s a recipe you make that lists beer as one of the ingredients? If not beer, how about yeast?
I can’t stand beer, doesn’t matter whether it’s alcohol in it. I honestly don’t know any recipe with beer or yeast in it. That being said, my father used to make bread from scratch, including “waking” the yeast for the dough. That expression always made me laugh.

5. As I grow older I would like to be a woman (or man, if there are any men in the HP today) who…
Practises expressing gratitude everyday.

6. Insert your own random thought here.
Speaking of my answer to #2, I had an interesting conversation with the student staff today. I have as soon as I came here expressed that I’d prefer not to be helped with my personal care by male staff. When discussing this with this student staff a few days ago, I said that I could try to do my personal care myself if there’s no female staff available. This staff either understood this to mean that, if he works on my side of the home, I’ll do my personal care by myself, or I thought he understood it this way. Rather, I had meant it if no female staff are available at all.

It may seem weird that, if I can do my personal care by myself if absolutely necessary, I may want help with it sometimes or most times. The reason has to do with the fact that doing my personal care costs me a lot of energy without giving me much satisfaction at all. I don’t personally feel that self-reliance is an end goal in itself, so I get help with my personal care. Thankfully, my staff agree. Then again, I can’t expect there to always be a female staff in the home, so when there isn’t, I make the choice to invest the extra energy into my personal care in order to preserve my dignity as a married woman.

My Ideal Space

I have been thinking about my ideal living space lately; a space I can feel safe, secure and at home in. When I wrote my post describing my safe space a few weeks ago, I realized that, other than the unicorns, I could almost recreate my safe space right here in my current care facility. In fact, I have nothing to complain about my room, with my private bathroom, kitchenette and even my own balcony.

So why do I feel I want to move to a different care facility, and why, in fact, do I feel like I actually want to sacrifice some of the aspects that make my current room great, in order to live in a more suitable care home, and what does “more suitable” even mean? I’ve said many times that I want to move to institution grounds, because then I’d be able to feel like I’d be more sheltered when going outdoors. Thankfully, most of my current readers didn’t know me fifteen years ago, or they’d call me crazy now for such a 180-degree turn from saying institutionalization is bad and community care is always preferrable to now wishing to be institutionalized myself.


This post was written for this week’s Six-Sentence Story link-up, for which the prompt word is “space”.

A Courageous Choice

I was a shy, withdrawn teen who was loyal to my parents even though they didn’t have my best interest in mind. I mean, if they’d had their way, I’d have gone to university and lived on my own straight out of high school in 2005, even though I could barely take care of myself. That had been their attitude towards raising “responsible” children ever since I was a little girl: if I couldn’t – or in their opinion was too strong-willed to – learn a skill as a child, I’d learn it as an adult by myself. Or not. In any case, there was no safety net.

Though I do indeed feel that children benefit from learning by doing themselves, this was not how it worked in my family. I don’t blame my parents for not having the patience to teach me self-care skills, given that I got frustrated very easily, but I do hold them responsible for not having accepted the help they could have gotten. Though it might not have led to me becoming as independent as they’d want me to be, my current situation is about as far from that goal as can be. Then again, my parents hold me responsible for that. And I, in a sense, do too.

I was reminded of this situation when I read a journaling prompt that asked me to reflect on a courageous choice I made as a teen that’s still helping me today. I immediately thought of the choice to go into blindness training rather than straight to university once I’d graduated high school. Though this decision itself did not by far lead to the self-awareness I needed to try to get into long-term care, it was my first step into the care system. And, of course, as my parents predicted, I never fully got out.

Back in June of 2005, when I accepted the blindness training center psychologist’s offer to put me on the waiting list for the basic training program, I still had my head deep in the sand about my lack of independence skills. The psychologist did not. He suggested I go to a training home after finishing the program. He probably knew that, like many young people blind from birth, and especially those from families like mine who value academics over life skills, I wouldn’t be ready to move into independent living after a four-month, basic program. I wasn’t. I never would be. Till this day, I’m not sure whether this is my blindness or my autism or my mild cerebral palsy or what. I believe strongly that, with multiple disabilities, the whole is more than the sum of its parts. Thankfully, the authorities approving my long-term care funding, eventually agreed.

Confronting My Dependent Shadow Side

This afternoon, I downloaded a small collection of shadow work-based journaling prompts. One of them is to write about the time I felt most offended by someone. What did that person say or do? And more important, what was my reaction? I am encouraged to focus mostly on the emotions involved rather than the mere facts.

The first thing that came to mind, was my former psychologist diagnosing me with dependent personality disorder. This, though, didn’t really offend me: it scared me. After all, she claimed not just that I was being passive and clingy, as people with DPD often are, but that I was misusing care. I, obviously, disagreed and feared losing my care because of her diagnosis. This, indeed, did happen about six months later.

The moment I felt most offended though, was the moment in June of last year when my husband said he thought I might have DPD. He may’ve forgotten that this was the exact diagnosis my psychologist had given me in order to kick me out of the psych hospital, since he did not propose I move back in with him. His reasoning was, however, the fact that, even with one-on-one support for most of the day, I still struggle.

I felt intensely triggered and scared again, but also angry. However, I wasn’t necessarily angry with him, but with my own dependent side. After all, maybe, just maybe, he is right indeed.

Deep down, I do know it is crazy to want – to feel I need – one-on-one attention all of the time. I don’t even want it, truthfully. Right now, I’m very content being by myself. But then again, why do I feel so anxious some of the time when my staff leave? Why can’t I make simple choices? Why do I need my husband to take responsibility for any major parts of my life? These are telltale DPD criteria!

I am not even scared of the diagnosis itself. Diagnoses are just labels. But I am scared of losing the care I have now, like I did in 2017. And then the little voice, my independent part, is telling me that I coped just fine. I mean, I know I took two overdoses of medication during my first six months of living with my husband, but wasn’t that just manipulation?

Couldn’t I have a much better, much richer life if I unlearned this intense fear of needing to fend for myself? Yes, yes, yes, I could! But does unlearning this fear mean being given a kick in the behind and being forced to live with my husband again? Maybe there are steps in between. Like, today I poured myself a glass of fruit-infused water, spilling a little over myself, but I did it anyway. I felt intense anxiety, because I knew my staff noticed and maybe she’s going to expect me to always be able to do this independently. Then again, so what? Then the worst thing that could happen is I can’t get fruit-infused water if this staff is working my shift and I don’t feel like pouring it myself. Is that so bad after all? And just to say, the staff didn’t even tell me to pour the drink myself. I just noticed the bottle was in front of me and I decided to try to do it. I could’ve asked her to pour the water for me, in which case she’d likely have done so. She is a staff who generally encourages independence, which sets off my demand avoidance. However, the fact that I not only did something independently I wouldn’t normally have done, but took the initiative rather than being encouraged (read: pushed), gave me a confidence boost.

Rebirth

I remember reading a story some years ago in the book Preemie Voices by Saroj Saigal. This is a collection of autobiographical letters from people who were once premature babies in the university hospital NICU Saigal worked for. I, like the contributors, was a preemie.

In this particular story, the author shared how she felt she has three birthdays: one, her actual birthday, the second, her original due date, and the third, the day of her rebirth. In this author’s case, her rebirth meant being diagnosed with Asperger’s Syndrome (her choice of words).

I haven’t experienced one such pivotal moment in my life. I mean, I too could choose the day I was diagnosed as autistic (March 16, 2007). Then again, my diagnosis has been removed and reaffirmed so many times that I could just as easily choose the last time I was diagnosed (May 1, 2017). Besides, self-diagnosis is valid too.

I could choose the day I was given long-term care funding (June 4, 2019). Maybe that is the most pivotal moment in my life, but it didn’t exactly mean I was reborn.

I could, of course, choose the day I became a Christ follower (December 7, 2020). Many people in the Evangelical Christian community say they are Born Again and indeed, rebirth in Christ is a common Biblical concept. However, I am more of the opinion that, as Christians, we are on a continuous path towards God. I believe that, each time I consciously pick up my Bible, or the cross my husband gifted me and which I use for prayer, or each time a message from God truly enters me, I am transformed a little bit. I don’t believe that I will be made fully new until the day of Jesus’ return.

All that being said, I do believe I am not the exact same I was a year ago. I am not even the same I was yesterday. Or when I started writing this post. In my view, every single moment is an opportunity for rebirth. Every second we are given is another second chance.

This post was written for Reena’s Xploration Challenge, for which the prompt this week is a theme: rebirth.

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!