Tag Archives: Institutionalization

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 mroe 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 “etit 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 syptoms 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.

K – #AtoZChallenge on Mental Health

Welcome to the letter K post in the #AtoZChallenge on mental health. I have only one word for you that is truly related to long-termmental health care and a few that are only perceived to be related. Here goes.

Keys

There is a joke that the differences between the patients and staff on a mental unit are, among others, that the patients get better and leave and that the staff have the keys. There are of course the locked units, where the staff have the keys to open the door of the ward. Even on open units, some rooms and cupboards are locked. This goes of course for the medicine room and cupboard, but also on some units the kitchen cupboards are locked so that patients can’t get food outside of meal times. My side of the unit is the only one where kitchen cupboards are open during the day. I was very surprised to find out that, not only are the cupboards locked on the other side of our unit, but on other units, the entire kitchen gets locked sometimes. This means people can’t even have tea when they want to.

Killers

Like I said before, some people get to the mental hospital on a forensic section. I don’t honestly know of most patients with a forensic status what crime they were convicted of. As such, it is totally prejudiced to assume some are killers – except that some people within the general population are killers too. People with psychotic disorders, which are the most common type of disorders in long-term mental health, don’t tend to kill random people even if they are violent. For clarity’s sake: most people with mental illness are not violent and the evidence is mixed on whether people with mental illnesses are more likely to become killers than those who don’t have a diagnosis. Some mental disorders do predispose people to criminal behavior, such as psychopathy or its milder variant antisocial personality disorder. Other disorders do not.

Kleptomania

It is a common belief that theft is particularly common in institutions, both mental and otherwise. I don’t know whether this is true. I for one have *knock on wood* not had anything stolen from me.

Kleptomania though is a compulsion to steal. It is not the same as someone stealing believing (delusionally) that an item is theirs or wanting the money to buy drugs or anything. Kleptomania is about stealing for stealth’s sake. Kleptomaniacs may even steal worthless items. Kleptomania does not usually lead peope to become institution patients. After all, theft is not serious enough a crime to get someone on a forensic section. Kleptomania is an impulse control disorder. Other such disorders, such as pyromania and intermittent explosive disorder, do potentially lead to serious enough crimes.

I – #AtoZChallenge on Mental Health

Welcome to the letter I post of my #AtoZChallenge on mental health. This was a hard letter again, but I stil have a few words for you. Here goes.

Intramuscular Injections

Antipsychotics can be taken by mouth, but many can also be injected in a patient’s muscle. That way, they need to be administered only once every week or two rather than taken daily, because in a muscle, they’re absorbed slowly and steadily. Intramuscular injections, also caled “depot medication”, are often used on patients who refuse oral medication.

Involuntary commitment

Like I said in my letter D post when discussing danger, patients who are a danger to themselves or others can be committed to a psychiatric hopsital involuntarily. In the Netherlands, there are several ways a patient can be committed involuntarily. In acute situations when a patient is a grave danger to themselves or others, they can be taken into care with the mayor’s approva. Usually, this takes the form of a simple phone call by a psychiatrist to the mayor (or their substitute), who will almost automatically give the go-ahead. A judge will see the patient committed this way within a few days and approve or deny the involuntary commitment. An acute section lasts three weeks and can be prolonged with another three weeks once.

If a situation is less of an acute problem or after at most six weeks on an acute section, a patient can be brought to a judge for a longer section. A patient does not need to be an immediate and grave danger to themselves or others; merely being a danger suffices.

There are two newer forms of commitment too. First, there’s the observation section, which lasts three weeks and is meant for people who haven’t yet been diagnosed with a mental illness and aren’t a grave, acute danger either. A patient on an observation section can’t be subjected to force. A patient who realizes they might become a danger at some point, can file for self-commitment, indicating they will be admitted to a hospital and treated if certain criteria have been met, whether they want to at this time or not.

A patient can’t at this point be forced into outpatient treatment unless through a provesional section, threatening involuntary inpatient treatment if they don’t comply with their treatment plan while in the community. The government is trying to change the law so that patients can in fact be forced into any form of mental health treatment.

H – #AtoZChallenge on Mental Health

Welcome to the letter H post in the #AtoZChallenge on mental health. I’m very tired but still managing to schedule my posts in advance. I hope the week-end brings some relaxation. Anyway, here goes.

Handover

The nurses’ discussion of patients at the end of one shift and the beginning of another. At least, they’re supposed to discuss patients but may discuss whatever’s on their minds. Handover, like evening and afternoon breaks for nurses, tends to last much longer than it’s supposed to.

Homelessness

A significant number of patients on long-term inpatient units don’t have a home outside of the institution. Some have actually been homeless before they were admitted to the hospital, while others, like myself, gave up their housing. I didn’t have a home for over 2 1/2 years between giving up my student accommodation in 2010 and getting the small town apartment with my husband in 2012. Unfortunately, if your official residence is the institution and you want to rent a home later on, the housing corporations may make a problem out of it. It wasn’t too bad when I got the apartment – they just needed my psychologist’s approval to move -, but I’ve heard of people being kicked off the housing list for being institutionalized.

Hormones

Hormones are often thought to play a role in mental health, especialy if the problems start in puberty, during or after pregnancy or during menopause. Postnatal depression or anxiety is fairly common, although skeptics believe it’s a fictional disease. Unfortunately, when people get ill and hormones are being blamed, they may miss out on potentially sanity-saving treatments. The reverse is, of course, also true: people getting treated with psychotropic medications when really their hormones are acting up.

Hygiene

Hygiene is often a big issue for mentally ill people. Of those in long-term inpatient units, most, including myself, need reminders or even bribing to get showered, use deodorant or brush their teeth. With some people, staff leave this responsibility with the patient, but with others, they’re very asseritve in their attempts to get the patient to take proper care of themself.

F – #AtoZChallenge on Mental Health

Welcome to my letter F poost in the #AtoZChallenge on mental health. I hope you are enjoying and learning from the challenge so far. For this post, I have a few new words for you.

Food

No, I don’t mean to discuss how mental illness impacts one’s relationship with food, though it can often change ot “It’s complicated”. I want to discuss institution food. Yes, it is as bad as you thought it’d be. We used to be able to pick something that wasn’t too bad off the menu, but now that we get the food in bulk, the nurses decide what everyone will eat. It’s so bad that if you’re a vegetarian new to the unit, you may need to wait a week or two before you get your veggie burger. I don’t know whether the same is true if you have a food intolerance.

Force

I’ve discussed words that relate to this one, such as control and dependence. Force can only be used on people who are invooluntarily committed to the hospital or in emergency situations. For example, if someone is attacking a nurse, they don’t need to wait to get the patient sectioned before using solitary confinement or rapid tranquilization. Though force cannot be used unless a patient has been involuntarily committed or there’s an emergency, coercion can be used pretty much whenever the staff see fit. In 2008, when I was on the locked unit, I was threatened with a section or forced discharge if I didn’t consent to solitary confinement.

Forensic Unit

Until the early 1990s, the only forensic psychiatric units that existed in the Netherladns were either state hospitals or specific prison units. A person can’t be sent to a state hospital on a forensic section unless they’ve committed a violent or sexual crime. In fact, until a few years ago, people who had merely threatened violence could only be sent to a state hospital for four years at most.

Now, many regular mental institutions have forensic units. These are used as a step down from a state hospital for people who are ready for resocialization or for people convicted of less serious crimes. Forensic psychiatric units also serve people who are at risk of coming into contact with the criminal justice system.

C – #AtoZChallenge on Mental Health

Welcome to the #AtoZChallenge on mental health, letter C. Today, I have quite a few words to discuss with you.

Care Plan

When I first entered the world of care, I didn’t have a care plan. They were just starting this up at the blindness rehabilitation center and I was among the last who didn’t have one. I hated it, because I thought a care plan meant I’d actually get better care. That’s the idea. It doesn’t work that way in real care.

Care plans in mental health are part of treatment plans but not the same. They list the patient’s goals for a particular time period, the help a patient will get and the risks if the patient doesn’t get that help. Care plans are framed in a very rigid format. As such, they cannot accommodate all the varied problem areas a mental patient might experience. The care plan also needs to conform to one’s care package, which is the amount of funding allocated to a patient’s care. Then again, care plans are also used to justify funding. If this isn’t a circular argument, I don’t know what is.

Caseload

A treatment or care provider’s caseload is the number of patients assigned to them. In intensive outpatinet care, one professional might have a caseload of ten patients. Usually, their caseload is much larger. Caseloads are related to how much care a person is allocated again. For instance, as a person in my care package category, I’m only allocated 50 minutes of “treatment” a week. This includes psychotherapy or counseling, social work, medication management, etc.

Comorbidity

This is the co-existence of two or more mental illnesses in one person. Many people in long-term psychiatric care have more than one diagnosis. Interestingly, a “dual diagnosis” refers specifically to a mental illness and an addiction co-existing.

Control

I once read a list of things typical to institution life, and at the end, the list went: control, control, control. Even though the philosophy of mental institutions has changed over the past several decades to “allow” patients more independence and to rehabilitate us, this has become its own framework of control. I have had many battles with nurses who said that, because this is a treatment unit, I should be able to do daily activities independently, despite the fact that I can’t do most of these.

Out of My Head, Out of My Reach

I have been feeling a lack of motivation for blogging lately, especially in English. I blame, in part, the restart (again) of my Dutch blog, but I also blame the fact that just too much is going on in my mind that I don’t know how to put into words on paper (or on the computer screen, of course). Today, I got myself yet a couple more journaling guides, and one of them is 53 Weekly Writing Retreats by Mari L. McCarthy. I subscribe to her newsletter and have been thinking of joining one of her journaling courses, but I never followed through.

The first journaling exercise in this 53 weekly retreats thingy is called “Goin’ Outta My Head”. It asks you to write what’s on your mind. This may not exactly turn into a blog post that’s going to go viral (not that any of my blog posts will ever go viral, ha), but I don’t care. Here goes.

I’m having huge difficulty imagining I’ll ever be ready for life with my husband. My husband wants me to practise coming to our home on a MOnday or Friday (so after or before the week-end we’ll spend together) to practise time alone where I can’t reach out for support. He wants me to use my limited accessible long-distance transportation for this. The tiny village is not in the same short-distance transportation area as the institution, so I can’t use the virtually unlimited regional accessible transportation service. Not that I have a regional accessible transportation pass yet. Anyway, it sounds logical that I’d use my limited transportation for rehabilitation rather than socialization. Or not. I am supposed to visit a friend at the other end of the country on Thursday, but the bidirectional journey costs me about half my allocated transportation kilometers. I’ve now setteld on going part-way by accessible transportation and part-way by train, thanks to a great service that allows consumers to combine accessible transportation with guided public transportation.

However, I’m completely overwhelmed by the whole idea of having to live with my husband in four months. He works full-time. We live in a tiny village where the nearest support agency is almost 20km away. We don’t have a clue whether I can get on-call support at all. We don’t even have a clue where to ask these things, and yet, because we moved out of area, social work isn’t going to help us. And because it might slow down my rehabilitation process, the professionals in control won’t let me go to an institution that is within our area.

I like our new house far better than the old one and, besides, it’s where my husband feels at home. I have never had a place where I felt at home at all, and I don’t want to make my husband feel out of place. The care in our old town isn’t great either. Besides, there’s just no going back. I agreed to move to the tiny village and we’ll have to deal with it.

However, because the powers-that-be take no responsibility for getting me proper care but are refusing to let me go to an institution that will, I feel like all responsibility rests upon my shoulders but I have zero control. I got this whole ball rolling with my comment, over a year ago, that I want to go live with my husband, yet now the ball is completely out of my reach.