Tag Archives: Institutionalization

#WeekendCoffeeShare for June 3, 2018

Welcome to this week’s #WeekendCoffeeShare. I’m a little late this week, as yesterday my husband and I spent most of the day at my in-laws and I didn’t have my computer or external keyboard for my phone with me, so I could barely type. So grab a cup of your favorite drink and sit with me as I write about this week. I’ll have a cup of green tea instead of coffee even though it isn’t terribly late here yet.

On Saturday last week, I finally went onto the scale again. I hadn’t weighed myself in a few weeks. As I feared, I had gained weight, but even more than I expected. I’d gained 2kg. I was so angry with myself. I mean, yes, we’d eaten pizza three evenings that week, but that couldn’t possibly explain such a huge weight gain. My husband tried to reassure me, saying I was probably constipated. This may be so, as the next day I’d gained another 800 grams. Tomorrow marks one year since the start of my weight loss journey and I’m afraid I will not reach my goal of having a BMI under 30. Then again, last January, I did reach this goal already and stayed at that weight all through early May.

On Sunday evening, the Center for Consultation and Expertise (CCE) coordinator E-mailed me and my support coordinator. As we’d had the meeting with her on the 15th of May, she’d planned on discussing my case on the following Monday but hadn’t realized this was a bank holiday. She had eventually discussed me with her colleague and had decided to ask a consultant to focus assessment on my needs and wishes rather than on a diagnosis. On Tuesday, she E-mailed us again to let us know she’d found a suitable consultant and we’d be contacted again to set an appointment for a first meeting.

My support coordinator had also inquired about getting long-term care funding for me. Whether this is possible, depends on whether my blindness is the primary reason for my care or my mental health or autism. If it’s blindness, I may get long-term care funding, whereas if it’s autism or mental illness, I definitely won’t. Long-term care funding would enable me to move to supported housing for the disabled or get more support while living with my husband.

On Thursday, I had my first session of dialectical behavior therapy (DBT) with my new nurse practitioner. DBT was originally developed for treating people with borderline personality disorder (BPD). It’s usually group therapy. Though I do have BPD traits, I’m also autistic, which means that group therapy would be hard for me. I therefore do the DBT individually. I had already started DBT with my community psychiatric nurse, who left recently. My nurse practitioner, who took over from her, proposed to start at the beginning of the therapy manual again. We only managed to work through the first page, which details the goals of DBT. There are four skills domains on which I’ll work: mindfulness, emotion regulation, interpersonal effectiveness and distress tolerance.

I also realized as I was talking to my nurse practtitioner how angry I still am at the psychologist from the institution who kicked me out almost with no after care last year. My nurse practitioner did the intake interview for this team with me last year and mentioned how he and the psychiatrist got a totally different impression of me than said psychologist had painted. The psychologist had diagnosed me with dependent personality disorder for claiming care I supposedly didn’t need. She removed my autism diagnosis. The nurse practitioner and psychiatrist saw pretty soon that I’m not dependent at all. Yes, I need a lot of support, but that’s due to my disabilities (including autism), not low self-esteem. In fact, I just realized how this psychologist had in fact broken my self-determination. I don’t feel safe to ask for help much now and am a lot more passive than I was when I had this dependency diagnosis. My nurse practitioner validated my feelings, in fact saying that the reason for the CCE involvement is in part the poor after care this psychologist had arranged for.

On Friday, I went adaptive horseback riding again. Angie, my horse, was scared of a car passing by and attempted to go on the run while I sat on her back. This was terrifying. Thankfully, I managed to keep seated on her back. She was quickly calmed down again, but I was shocked for a bit aftwards. So was the girl who held the horse. Thanfkully, the instructor always walks beside my horse because of my blindness, so the girl wasn’t on her own. I still had fun horseback riding.

I’ve yet to think of what I want for my birthday at the end of the month. I will have to look at sensory toy shops for inspiration. I’m also thinking of starting up the soap making craft again, so maybe I’ll ask for supplies for that.

What have you all been up to this past week?

My Favorite Place

I want to write, but once again I don’t know what about, so I looked through one of my collections of journaling prompts. One prompt that stood out to me was to finish the following thought: “My favorite place in the whole world is…”

As regular readers of this blog may know, I’m an inner wanderer. What this means is, I rarely if ever truly feel at home. The most safe I’ve ever felt was in the institution in Nijmegen but that, too, wasn’t home. I wasn’t supposed to stay there for life, after all.

I don’t even know whether the fact that I never feel at home anywhere – no, not even in my current home with my husband -, is a thing related to the physical place I am in. Of course, there are things my dream house has that this house doesn’t have – a bathtub, for example -, and of course there are many, many things I’d want close by that this tiny village doesn’t have. However, even in my dream house in my dream town, I’d probably still feel like something’s missing.

What was it in the institution that had me feel closest to home? It was, in part, the fact that I had support I could rely on, who saw me as I was. Then again, my husband sees me as I am too and tries to support me as much as he can when he’s home. Would I feel better if I had support nearby whenever he’s not home? Yes, I think so. But would that fill the void of never ever belonging anywhere? No.

This evening, I was sad because I don’t have a meaningful life. I mean, sure I go to day activities, but we barely do anything that has any sort of meaning beyond sensory stimulation there. That’s what the group is for, after all. My husband mentioned my blog, but I have little to write about. I have long let go of the illusion that I’ll ever have a real job, but I’d really like to make soap again. I know, I will never do it fully independently, and that’s sort of okay with me, but I haven’t done it in months at all. My husband said I could ask him to help me. Same for making smoothies or the like. That helps.

To conclude, I’d say my favorite place in the whole world is not a physical place. It’s a state of mind: that of being sort of content with my life.

The Five Most Significant Events

Oh my, why can’t I seem to write when I truly want to? I mean, I feel uninspired, but then again I have a lot of collections of writing prompts. I have at least three eBooks full of writing prompts, a few collections downloaded from the Internet and even an app on my phone. From this app, Paperblanks, comes the prompt I’m going to journal on today. The prompt asks me to name the five most significant events of the first 25 years of my life.

This is going to be really hard, as I’m supposed to name just five. The last nearly seven years do not count, so I cannot mention the day I finally left the psychiatric institution or even the day I got married. I am however more tempted to write on more recent events, whereas my childhood was important too. I just don’t remember it that well.

1. The day I came home from the NICU, September 29, 1986. The first one, hence, is going to be one I have zero memory of but that shaped me for the rest of my life. After all, if I’d not made it home from the hospital at three months of age, I may not have been alive or able to share my story today. I came home on my due date.

2. The day I started in special education, May 11, 1992. I had to leave Kindergarten at a mainstream school before the year was over. Till this day, I don’t know why. My parents claim that the reason I had to transfer to the school for the visually impaired is my need to learn Braille, which I didn’t get to learn until more than a year later. They also say my Kindergarten teacher wouldn’t be able to move to first grade with me and no other teacher could teach me. However, then why did I have to leave so suddenly? In my memory, I was ill shortly before leaving the mainstream school, but I don’t know what that has to do with it, if anything.

3. The day I started back in mainstream secondary education, August 25, 1999. This day is significant because it shows my ability to be determined. A lot of people say I’m not determined at all and give up way too easily, but I did complete the full six years of my level of secondary education even though I hated it. I don’t think my parents deserve all the credits for this.

4. The day I started in rehabilitation for my blindness, August 22, 2005. This day is significant because it symbolizes my self-direction. It was the first time I decided I wanted to work on my own goals rather than those set forth for me by my parents.

5. The day of my admission to the mental hospital, November 3, 2007. Do I really need to explain? This day symbolizes my ultimate break-away from my parents’ power over me. Even though those 9 1/2 years in the institution weren’t too productive, I don’t regret having agreed to be admitted at all.

DIY Daddy

Over: The Part of My Life I Consider Truly Over #AtoZChallenge

Welcome to day 15 in the #AtoZChallenge. I typed yesterday’s post rather quickly, so that a typeo ended up in the post title. Sorry for that. Today’s letter is O and I have once again chosen a prompt from the 397 journal writing prompts and ideas eBook. It is “Over” and asks me to write about what time of my life I consider truly over.

Last November, I celebrated ten years since my psychiatric crisis that got me admitted to the hospital. I resolved to look to the future from then on and have a positive outlook on life. Indeed, it is unlikely that I will ever be admitted back into a psychiatric hospital even if I land in a similar crisis to the one that got me admitted in 2007. Psychiatry has changed, after all. As such, I consider my psychiatric hospital life truly over.

That being said, the memory is still too fresh to truly close the chapter. So I’ll have to look back at another time in my life that I consider truly and well over. This is my time in high school.

I graduated from high school in 2005. This is thirteen years ago this year. Though I still can’t say I never remember my high school days anymore, I do consider this time of my life really over. I mean, even if I end up in an institution again – which is possible, even if it’s unlikely -, I will never go back to high school. I graduated that, so I won’t have to.

This is also the most recent “success story” in my life. Yeah, I know, leaving a mental institution after 9 1/2 years is a greater accoplishment, but that’s not “normal” success. My parents show pride in my having graduated from high school. They don’t show pride in my living with my husband.

Because of this, my high school days also are symbolic for my obeying my parents’ wishes for me. I don’t do that now. Letting go of my high school years means letting go of the need to meet up to my parents’ expectations. They are not realistic and besides, I don’t live for my parents. I live for myself.

Keys: My Time on a Locked Psychiatric Unit #AtoZChallenge

Welcome to day 11 in the #AtoZChallenge of random reflections. The letter K is really hard for me. It was everytime I did this challenge. Somehow, each word that comes to mind starting with K doesn’t seem right. For example, the 397 journal writing prompts and ideas eBook says “Kindness”. In the A to Z of me I chose “Kids”, but I wrote about my childless life already. Now that I write this, something pops up in my mind. In 2016, when I did the A to Z of mental health, I posted among other things about “Keys”. Today, I am picking up this word and reflecting on my sixteen months on a locked psychiatric unit.

It was never intended by the psychiatrist who admitted me to hospital in 2007 that I go to the locked ward at all. However, the open ward was full at the time of my urgent admission, so I was placed on the locked ward. This was in my parents’ city and I only was there for a week-end. When I was transferred to my own city, I wasn’t even told what unit I’d be placed on, but I ended up on one of the two locked units. It was the “least restrictive” locked unit, which didn’t have real isolation rooms. It did have time-out rooms in which you could be locked up, which aren’t much better.

Two weeks into my stay, my doctor informed me that I could in his opinion transition to the open unit. He however soon made up his mind, as I had terrible meltdowns. This was in fact what kept me on the locked unit for sixteen months, because the open resocialization unit initially didn’t want me.

For the first three months of my hospital stay, I had almost no privileges, which meant that I could only leave the unit accompanied by an adult. These three months were a long time, considering that most people don’t even spend that long in a psychiatric hospital. In the grand scheme of things though, it sounds like a very short time. Within a month from getting some unaccompanied off-ward privileges, I had full privileges and they were never restricted again.

I didn’t really mind being on a locked unit, but it’s still pretty strange. I mean, now that I live independently, I still struggle to leave the house without someone else even to sit in the garden. This is in part due to my terrible orientation and mobility skills, but it may also be a form of continued institutionalization syndrome.

Update on Day Activities

I have not written a diary-style entry in a while, even though I hoped it’d help me write more often. The past few weeks have been rather eventful with things needing to be worked out for my day activities. Not that anything concrete has come out of it yet, but today, I am hopeful that something will.

In early February, we had a “big meeting” to discuss how to proceed now that my day activities hours were cut and I would maybe have to leave this day center. It was decided that we’d involve the Center for Consultation and Expertise (CCE) to help us detail my support needs. In the meantime, my home support hours were doubled as to give my support coordinator some time to help me find a new place.

My CPN took it upon herself to call the CCE. I don’t know how the conversation between her and the CCE person went, but they concluded eventually that my problem was mainly my blindness. I didn’t understand why, since I’d been almost kicked out of day activities for self-injurious behaviors and meltdowns – not your average blind person’s everyday behavior. The whole thing frustrated me to no end, as blindness agencies have consistently said that my main problem is definitely not my blindness and now the CCE was referring me back to them.

When I read my CPN’s notes on the meeting in which she told me about her conversation with the CCE, I got an idea where the misunderstanding had come from. She wrote about my anxiey regarding demands in light of my having to learn new skills. I figured she’d told the CCE person about the recommendation that I get independent living skills training, which is not the CCE’s department. They offer consultations in situations where the client falls through the cracks because of severe problem behavior, after all. Resistance to demands does not necessarily present with severe problem behavior, I suppose.

When I asked my CPN for clarification though last week, I found out that she doesn’t even believe I have severe problem behaviors. I’m not 100% sure either that my behaviors are severe enough for the CCE, but my CPN’s reasoning for dismissing my problem behaviors altogether was rather strange: I wouldn’t be able to be married if I had problem behaviors. She also mentioned that I wouldn’t be able to live independently in that case either, which I understand. Then again, with today’s budget cuts to mental health and long-term care, once living in the community, you’d need to be virtually dead to be admitted back to an institution. Maybe a virtually dead person is the kind of case the CCE usually works on too, and in all fairness, I’m not dead.

I was badly triggered by my CPN’s comments. What mostly triggered me was her saying that I had “escaped” an institution. I hadn’t. I had been kicked out.

Later last week, my support coordinator talked to my CPN about her feeling that we should at least try to get the CCE involved based on my full story. We worked on the application this afternoon, but didn’t finish it yet, as I was getting overwhelmed.

As for finding me a new place for day activities, we currently have two organizations we’re still in contact with. Both are organizations serving primarily intellectually disabled people. Neither has offered me an orientation meeting yet, but at least neither has rejected me yet. Two other organizations did reject me and several others, we are still thinking on contacting but are most likely unsuitable.

I’m Officially Home!: The Road to My Discharge from the Mental Institution

It’s official: I am home. Yesterday was my formal discharge date from the institution. It would’ve been May 1, but got delayed one week because I needed more time to make arrangements for my after care. Today, I’ll share my journey to getting the care I need and living in the house I want to live in with the man I want to live with.

Like I said, my original discharge date was May 1. However, a week before that, nothing had been arranged in the way of after care yet. I’d have my first appointment with a psychiatrist from the community treatment team that Friday, April 28. That was all my psychologist said she was required to do in terms of making sure I am in care once discharged. Apparently, she and the social worker had deliberately handed me the responsibility of making sure I’d have day activities and home support, only without telling me I had been handed that responsibility. I didn’t find out about this till April 26, when I had my “exit meeting”, as my psychologist called it. Call me a cynic, but I immediately thought of the Swiss end-of-life clinic by the name of Exit.

After my “exit meeting”, I was very much in distress. I called the patient advocacy person, but she couldn’t do anything for me, as I’d be in the community team’s hands. I called my husband, who was on the road. Desperate, I called my mother-in-law. She asked for my psychologist’s number and somehow convinced her to give me that extra week. It was suggested to me that all it’d take to make sure I’d have day activities was a phone call to the day activity place manager, who was on vacation during the last week of April and would be back May 2. It wasn’t exactly that simple, but in the end it was close to that simple indeed.

On April 28, I had my intake interview with the community treatment team psychiatrist and nurse practitioner. They were much more supportive than anyone in the institution had ever appeared to be upon first meeting them. I suspect this psychiatrist has never worked for a long-term care unit, as she was surprised I didn’t get any therapy there other than day activities. “But it’s a psychiatric hospital,” she said. There she nailed the reason I’ve called it an institution for years: there is very little in the way of actual psychiatric treatment. In fact, a student nurse at one point referred to clozapine, the last-resort antipsychotic the majority of the patients on my unit take, as palliative care. I know for some people it’s a miracle drug, but for many on my unit, all it did was keep them just about stable enough that they could handle an unlocked door.

Like I said, my meeting with the community psychiatrist and nurse practitioner went well. We discussed my symptoms and needs. They would be contacting the home support team, which is with the mental health agency, on my behalf. If no day activities had been arranged by May 12, when I’d have my next appointment, they would also work their arses off to get me day activities.

Last Thursday, May 4, I had appointments at two day activity places. One is for traumatic or acquired brain injury survivors, while the other is for people with an intellectual disability. I had my doubts regarding the first one, which I’d visited in August of last year. This was only confirmed when I went back for an intake interview. It was all very formal. Though this could’ve been because I had already visited the place, it made me feel a little unwelcome. When I disclosed I was also going to look at the other place, the staff at the first place said this might be more suitable indeed. I’d still be welcome at the brain injury place. However, I felt there was too little I could do independently enough there.

I had a taxi drive me to the other day activity place. When I opened the door, some clients welcomed me. They found a staff member, who seated me in a spare room and poured me a cup of coffee while I was waiting for the head staffer to come see me. I talked to him and to one of the staff at the group I’d be placed in. The “orange group” is a group of relatively capable intellectually disabled people who do simple manual labor tasks like packaging, sorting etc. Fortunately, there is no pressure to be quick or do it perfectly. I was a little worried the tasks would be incredibly boring and too difficult at the same time, but I realized it’d either be this or no day activities. Besides, the staff and other clients were very enthusaistic and welcoming. It looked like I might actually have day activities right after my discharge.

Yesterday, however, I had a meeting with the social consultant in charge of my case. The day activity place had already made all arrangements so that I could start “working” there and in fact, yesterday morning I was awoken by the taxi driver ready to drive me there. I had clrearly told the day activity staff that I’d first meet with the social consultant and start “working” on Tuesday, not Monday. For a bit, as I met with the social consultant, it seemed as though it’d all been one big mistake and I wouldn’t be able to start day activities today. However, late in the evening, I received an E-mail from her saying she had pre-approved me for day activities and I could in fact start “working” today.

In Between: Walking the Disability Line

This week, the prompt from mumturnedmom is “in between”. I immediately thought of my life as a disabled person. For many years, I’ve thought of it metaphorically as me walking a line between being good enough to be included in the non-disabled world and bad enough to deserve care.

I am multiply-disabled. I reside in an institution with 24-hour care. I am not even in the lowest care category for institutionalized people now that we’ve faced massive budget cuts and the lower care categories got deinstitutionalized.

Yet I am intellectually capable. I am stable enough not to need to be on a locked unit, and in fact am going to leave the institution in a few months. I will then fall in a lower care category, be entitled to less care. Yet I will be able to live a more normal life with my husband.

People often automatically assume that, if you have certain abilities, you are automatically less disabled than if you don’t have these abilities. For instance, I am always seen as “high-functioning” autistic because of my IQ. This is despite the fact that I’m in a similar care category to someone with an intellectual disability who has fewer behavioral challenges, sensory issues, or is more capable in daily living tasks than me.

People also often automatically assume that deinstitutionalization is appropriate only for those with few care needs, those who are “high-functioning” if you will. People don’t take into account that institutional life requires consumers to live in a group setting, which may not be possible for some.

I struggle with this view of disability as a continuum at best and a dichotomy at worst. It makes me walk the line between “high-functioning” and “low-functioning”, when in truth, I’m neither and I’m both and I’m in between.

I am “high-functioning” because of my IQ and my language skills. I am “low-functioning” because of my poor daily living skills. In most ways, however, I’m neither and I’m both and I’m in between depending on circumstances both within myself and in the environment. Yet I’m forced to choose.

And I refuse to choose. I want to be accepted as a human being with her own set of capabilities and difficulties. I refuse to choose between being “high-functioning” and being “low-functioning”, between being dependent and independent. After all, I am interdependent, like veryone else.

mumturnedmom

Q – #AtoZChallenge on Mental Health

Welcome to the letter Q post in the #AtoZChallenge on mental health. This letter was hard at first, but I still came up with a few words. Here goes.

Quality of Care

Quality of care is important mainly to health insurers. That is, it’s not necessarily the real quality of care that’s importnat but how it’s documented in paperwork. As such, we often get patient satisfaction questionnaires. I think they’re worthless. So is the endless stream of paperwork staff have to complete to justify the care they provide. After all, the more staff have to deal with paperwork and patient satisfaction questionnaires, the less they can actually do the real work of care.

Quality of Life

Another loaded term which is used to assess people’s satisfaction with their lives. We get this scale called the Manchester Short Assessment of Qualty of Life questionnaire four times a year. I laugh at the randomness of questions. Like, inbetween questios about your satisfaction with friendships, your financial situation and such is the question whether you’ve been accused of a crime within the past year.

Seriously though, quality of life assessments have real impact on care and policies. For example, if a lot of people treated in a certain way for a certain condition have a very poor quality of life post-treatment, this treatment is unlikely to be used often in the future.

Quiet Room

The “quiet room” or “time-out” is an euphemism for seclusion or the isolation room. Many survivors of forced psychiatric treatment report very traumatic experiences with the “quiet room”. Others find it helpful when they’re severely disturbed, because they can scream there. I have mixed experiences. When I was still on a locked unit, it was often used as a threat to “give me back my responsibility for my behavior”. Seclusion cannot legally be used in this way in the Netherlands; its only purpose can be to avert danger. Now that I’m on an open unit, however, I find sometimes when I’m in crisis that it helps to have me in seclusion for a while.

L – #AtoZChallenge on Mental Health

Hi and welcome to the letter L post in the #AtoZChallenge on mental health. I did not have the energy to schedule this post in advance, because I was extremely tired over th =e past few days. Sorry for that. Here goes.

Lethargy

This is quite a suitable word for today. Lethargy means being overly tired and also often being unresponsive, not very alert. Lethargy can be both a side effect of sychiatric medication and a symptom of psychotic disorders, although in that case it usually presents differently.

Loneliness

Loneliness and aloneness are pretty common among psychiatric patients. Some people’s mental illness causes them to self-isolate, while other people suffer from being isolated from others. To combat loneliness, many support organizations for people with mental illness have buddy programs that pair a client with a volunteer.

Long-Term Care

Many people with severe mental illness need care throughout their lives. Outpatient care, even if it’s for life, is covered through health insurance or community assistance. There are strict limitations on outpatient care and people need to be re-assessed regularly. In the Netherlands, the Long-Term Care Act only covers long-term inpatient treatment for the mentally ill and institutionalization or supported housing for people with other severe disabilities. People with mental illness who lived in supported housing when the Long-Term Care Act went into effect in 2015, have five years of transitional rights to supported housing care, after which they need to get re-assessed. They may then get approved for care through the Long-Term Care Act, which is essentially for life. People with other disabilities who lived in institutions or supported hosuign by 2015, got approved for the Long-Term Care Act automatically.

In the original draft of the Long-Term Care Act, people with psychiatric disorders were ineligible for long-term, institutional care. Eventually, they are now eligible only if they’ve been in inpatient mental health treatment for at least three years. I wonder what this means if I fail at living with my husband, since I have been an institution patient for over three years but didn’t apply for LOng-Term Care Act funding right away.