Tag Archives: Social Worker

Transitioning: The End of the Tunnel

On May 1, Mari L. McCarthy started the 22-day life transitions journaling challenge. I didn’t sign up, since I had just failed on committing to the whole health challenge in April. However, today I bought the challenge eBook – from KObo, not Mari’s own site, since it’s much cheaper on Kobo. Since I am about to start in what may be the most important transition of my life, I thought I’d try my hand at the challenge. For day one, we’re supposed to meditate on where we are right now and where we want to be headed.

I visualize the point where I’m now as being at the beginning of a tunnel. It’s not necessarily a dark tunnel, but I can’t see the end of it as I look into it. Nonetheless, i know it will end somewhere in the tiny village, in my husband’s and my home. I can only head this way, but since I can’t see what’s inside the tunnel, I cannot see what’s going to come onto my path as I head into the tunnel. I know where this will end, but I don’t know how or when. After all, no definite date has been set for my discharge from the institution. Though I will have the “kitchen table talk” with the social consultant on Monday, right now I have no idea how I will cross this tunnel and what I’ll find at the end of it.

I can however hear my husban calling me from the other end. I can hear him cheer me up that it’d be so great and utterly exciting to be together at last. I can hear my psychologist and social worker on my current end of the tunnel telling me that I wanted to go into it and come out at home. Even as I sit here, more than a year into the process of arranging for my transition out of the institution, I still am not sure that this is really what I want.

Sometimes, I idealize the end of the tunnel, what it’ll be like to be home. I see my husband lovingly embracing me. As he takes me into his arms, I know that I’m happy being with him and this was the best decision I could’ve made. I go to day activities. My psychologist already shot the snoezelen idea I came up with a few months ago, so I’ll go swimming and doing yoga and going for walks instead. I will meet some nice people at day activities or through the community. I’ll be much more independent than I am now, being able to do some cooking and cleaning on my own. I’ll eventually take up some classes again. My husband loves me when he comes home from work and we’re both happy.

At other times, such as right now, I devalue the end of the tunnel. I look at it as one dark pit in which I’ll fall. My husband and I constantly step on each other’s toes. When he’s home, I’m annoyed by him and he’s annoyed by me. When he’s at work, I’m at home alone sleeping the day away or daydreaming of harming myself. I don’t even have my blog anymore, since my husband doesn’t want me to write about my life at home and I can’t think of anything else to write about. I have nothing left except myself.

However, I will get through. I say this so that even if I don’t believe in it now, I won’t leave a bad omen by being all negative. I will make this transition and it may be hard, but it’s also good. No matter what, my husband loves me.

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.

Mental Health Care in the Netherlands #Write31Days

31 Days of Mental Health

My husband and I have been in the process of a possible move for a few weeks. In fact, we’ve been contemplating moving for months. Last week, however, my husband informed me we’re high on the housing corporation’s list for a house in a tiny village on the “right” side of Arnhem (that is, east from it of course). My husband has been wanting to move back to that area ever since we moved into our current apartment in 2012. Today, we got the housing corporation’s green light for a visitation, at which point we can decide whether we want the house or not. With the possible move coming so close, my husband started worrying about the possibility of me getting home care in a tiny, rural village. This gets me to today’s topic in the #Write31Days challenge on mental health: the mental health care system in the Netherlands. I will focus on adult care, because it’s complicated enough without adding in the Youth Act and what not.

There are basically three laws governing mental health care in the Netherlands. First is the Long-Term Care Act. The Long-Term Care Act covers institutional care that is essentially deemed lifelong. Examples are nursing homes, group homes for people with developmental or physical disabilities, or psychiatric supported housing placements. Originally, all people requiring long-term, institutional care because of a disability or illness were covered, except for those with psychiatric illnesses. Apparently, the government thought that a psychiatric illness cannot possibly be lifelong. Before the Act took effect, however, this problem was solved. Now, if a mentally ill person has been in inpatient treatment for three consecutive years, they may qualify for institutional care through the Long-Term Care Act. I have yet to find out whether, should I fall apart while living with my husband and need to be institutionalized, I’ll first need three more years of inpatient treatment before I can go into supported housing. After all, I already got those three years of treatment.

Next is the Health Insurance Act. Health insurance is mandatory in the Netherlands and, though insurance companies are private, they cannot turn anyone down for the “basic package”. Basic health insurance covers GP visits, care by medical specialists, most medications, hospitalization, and other care deemed necessary. Outpatient mental health care, partial hospitalization and the first three years of inpatient mental health treatment are covered by basic health insurance. So are most but not all psychiatric medications. For instance, benzodiazepines are not covered except if the patient requires “high doses” of them because of “severe mental illness” (or some other, non-psychiatric indications). I assume they essentially mean that it’s okay as long as the patient needs chemical restraint.

The final law covering mental health is the Community Assistance Act. This law is implemented by each local government, so each locality gets to decide which people qualify for funding for care. They also decide whether people have to pay a copay. The Community Assistance Act covers housekeeping services, day activities and independent living support, as well as short-term institutional care and respite care. I will need day activities and most importantly independent living support through the Community Assistance Act. Whether you get care and, if so, how much is determined through a “kitchen table meeting” with a “social consultant”. Family members are supposed to sit at the kitchen table too, because they too are expected to fulfill some care duties for their disabled or ill loved one. I’ve heard crazy examples where children are required to do housework because their parent is disabled. I don’t object to chores, but the local government shouldn’t assign them in my opinion.

It is the Community Assistance Act that is worrying me and my husband most in preparation for the possible move. I mean, my health insurance won’t change but my local government will. I trusted the social consultant with the local government in our current town, which happens to be in the same municipality as the institution. That will change if we move to the tiny village, because I’ll stay in my current institution whilst preparing for home support. Not that there is an institution in the tiny village municipality anyway. What this means is, my social worker, my husban and I will have to negotiate with a social consultant who isn’t familiar with my current care situation. Besides, like I said, I trust my current social consultant and you never know who you’ll be stuck with next. Of course, my current social consultant hasn’t made any final decisions yet, so that could be a disappointment too. I E-mailed my social worker asking her to get an idea of care in the municipality we may be moving to. I did a quick read of the municpality website and found out they mention the tiny village in their allocation of social consultants, so I assume this means there must be possibilities.

My #InvisibleFight for Mental Health #IIWK15

Today is the start of INvisible Illness Awareness Week. I already shared a post on ths year’s theme, my invisible fight, last week. This was about my fight for a correct diagnosis and treatment of my physical symptoms.

If all goes as planned, I will be participating in a 31-day writing challenge in October on the topic of mental health. I have lived with mental health problems pretty much all my life, though I didn’t get into the care system till 2007. In today’s post, I’m sharing my fight for proper mental health care.

I have had a number of diangoses for my mental health problems over the years. At first, in 2007, I was diagnosed with an adjustment disorder caused by the stress of my living independently while being multiply-dsabled. I was hospitalized on a locked psychiatric unit and stayed there for 1 1/2 years. An adjustment disorder can only persist for six months after the stressor has gone (so after I’d been hospitalized), so I had to be diagnosed with something else eventually. My new diagnosis was impulse control disorder nOS. Several years later, I got diagnosed with dissociative identity disorder (formerly known as multiple personality disorder) and post-traumatic stress disorder (PTSD). These finally got changed to borderline personality disorder in 2013.

It’s been a long fight to get the care I deserve and the fight is ongoing. In 2008, when on the locked unit, I was treated with seclusion or threatened seclusion whenever I acted even slightly irritable. I wasn’t told that, being an informally-admitted patient, I had to give consent for this treatment. My problems were treated like willful misbehavior, even though my diagnosis of impulse control disorder should suggest the behaviors were at least to an extent beyond my control.

I had a horribly authoritarian social worker at the time. She was mostly in charge of my care, because I was at this unit awaiting appropriate long-term residential care. At one point, when I objected to applying at a certain supported housing place because I didn’t meet half the admission criteria, she threatened to get me a guardian. Not that my parents, who would’ve been the most likely choice for guardianship, would’ve stood in the way of my making my own decisions. I have said many negative things about my parents, but one positive quality of theirs is that they allow me to be in charge of my own life.

I had to fight to be admitted to a resocialization unit in 2009. I first had to fight my social worker, who wanted to transfer me to a low-level supported housing placement instead. That was just too big a leap. I also had to fight the treatment team at the resocialization unit, who were skeptical I’d be able to cope on an open unit.

Once at the rsocialization unit, I got better treatment than I’d gotten at the locked unit. However, I didn’t get much better. Eventually, medicaiton was suggested. This was a huge step, as the doctor at the locked unit had always ignored my questions and suggestions about possibly going on medication. My antipsychotic is truly a lifesaver. Its dose had to be increased several times and an antidepressant had to be added, but now I’m quite stable.

In 2012, when I’d been diagnosed with dissociative identity disorder for some years but was noticing my psychologist didn’t have a clue how to treat it, I took it upon myself to find a suited therapist. I E-mailed around, was rejected many times, but eventually found someone. Unfortunately, by the time she had a spot for me, I’d transferred to my current institution and my diagnosis had just been changed to borderline personality disorder.

As the years passed, I got to know and love my husband and we eventually married in 2011. We originally weren’t planning on living together, but early this year, I changed my mind. We’ve been working towards discharge for me ever since. Thankfully, my psychologist and social worker are quite cooperative. The fight is not yet over. In fact, now that my discharge is coming closer being probably around three to six months away, I have to fight my inner demons. In other words, I have to fight the fear that I’ll break down again, like I did in 2007. Thankfully, my psychologist and social worker are understanding of this. I am hoping that, once I am settled in at my and my husband’s apartment, I can finally get treatment for my emotion regulation problems.

Everyday Gyaan

Also linking up to Invisible Illness Awareness Week 2015: Your Invisble Fight.

Grateful Friday

I tend to be a pessimist, not naturally looking at the positive. I truly had to teach myself to be grateful for the things I do have in life. Gratitude, however, has helped me in many ways. For example, it helps me lift my thoughts off of the negative. I, being borderline, still may experience sudden shifts in emotion towards the negative, but practising gratitude has helped me have a more positive basic outlook. I still can’t say I’ve turned into an optimist, as I still see the future more as a threat than as an opportunity. However, when it comes to the here and now, I am more happy with what I do have.

Also, gratitude spreads kindness. When I take everything for granted, people don’t feel worthy of doing things for me, because I am not appreciative. There have been times when I was really tense and asked for a walk. I still cannot prevent some irritability if the staff can’t take me on that walk yet – am working on that -, but I can make sure I show appreciation when they can. That hopefully makes them feel less frustrated at my irritability when they can’t meet my needs or wants.

This week started off particularly negative. I had severe temper outbursts on both Monday and Tuesday. However, when I talked to my psychologist on Wednesday, I was still frustrated but a little calmer. I was able to talk over one of my outbursts with the nurse who had been in charg eof my care on Tuesday, after I had talked to my psychologist. I was able to appreciate my nurse’s attitude and apologize for my own the previous day.

Today, I had a meeting with my social worker and came back truly grateful. We discussed my support needs for when I’ll move out of the institution and in with my husband. The nearby autism center had recommended I get an autism coach, but I feared they would not be able to provide the out-of-hours support I’ll need when my husband is at work. We’ll therefore need to get the mental health supported housing agency involved for this. My social worker wasn’t sure which would be the closest care office and thought it would be the nearest major city. The town our apartment is in doesn’t have a care office. Turns out however that there is a care office right on my institution grounds, which is about a ten-minute drive from my apartment.

My psychologist is going to get the outpatient treatment team for personality disorders involved for community-based support. This will likely mean just a weekly or biweekly meeting with a community psychiatric nurse and medication monitoring. My psychologist said I only need med monitoring, but I disagree. After all, if I end up in severe distress again while living independently, like in 2007, I don’t want to have to jump through a dozen hoops to get more help. Back then my GP managed my meds and the crisis team didn’t have a clue about my situation but ended up being called every so often by the police, because there was no-one within mental health services responsible for my care. Ultimately I landed in a crisis while in another city.

My social worker applied for me at the supported housing agency and is hoping to get a meeting next week. If not then, it’ll be in a month, since my social worker will be on vacation after next week.

The most exciting news is yet to come. My social worker asked when I expected to move out. I said I had my hopes up that it’d take only half a year. At that point she said: “If we can get all care in order by the end of the year, would that be okay with you too?” Of course it would! Of course, she didn’t promise I could be discharged at the end of the year, but I have my hopes up a bit.

Reflections From Me
Everyday Gyaan

Moving On: Moving in With My Husband, Maybe

As regular readers will know, I reside in a psychiatric institution and have since 2007. Originally, the psychiatrist who admitted me did foresee that it would not just be crisis intervention – getting me to sleep better and pop out of my suicidal thoughts. In addition, we’d need to find a suited supported housing placement to move me to from the psychiatric hospital, because I’d ended up in a crisis from having to live on my own. It just didn’t happen. No suitable supported housing place could be found and, more than seven years on, I’m still residing on a psychiatric unit.

When my now husband became my boyfriend and then my husband, several times the thought of us living together crossed our minds. He usually was the one asking me whether I’d consider living with him. I had my reservations, because I didn’t know I’d be able to cope when he’d be at college or later at work. Also, I didn’t want him to take on a carer role, as we’re supposed to be husband and wife not carer and patient.

I still believe my husband isn’t my carer, but he keeps telling me that even though he does more for me practically than I do for him, what I give him in love amounts to the same. Since I moved to the small town institution in 2013 and my husband had moved to the next town in late 2012, we’ve been closer together than ever before.

There have been a few reasons why I started considering moving in with my husband again late last year. First is my difficult relationship with the nursing staff at my current unit, so that I ended up calling my husband when in a crisis situation rather than enlisting the staff’s help anyway. The staff have on at least one occasion refused to come out to help me when I had run off the ward in a crisis state, and my husband had to come to collect me and get me back to the ward. Of course, this isn’t his job, but when the staff don’t do theirs, someone’s got to do it.

Secondly, it’s become increasingly hard for me to function in a group setting with increasingly little staff support and more severely ill fellow patients. I do know I cause trouble to the other patients too, so this is in no way meant to insult them. I just didn’t choose to live with them, and I do choose my husband to be my husband and hopefully can choose to live with him. Of course, after all, amidst all the practicalities, I love my husband and would very much like to be with him most of the time.

So I called my social worker in December to schedule an appointment to discuss the possibilities of me getting home support while living with my husband. The laws changed significantly at the start of this year, so I had some worries. The appointment was yesterday.

First, one of the main things that absolutely need to be in place for me to live with my husband is an out-of-hours support service that I can call when in an emergency when my husband is at work. They will need to be able to send a support worker to my home should I need in-home support. The area supported housing organization for the mentally ill provides these services, but probably not in my husband’s town. My social worker will look into this.

Additional needs are some day activities for me and possibly a bit of scheduled home support for establishing a daily structure. Thankfully, we won’t need housekeeping, as most local governments have cut out funding for that unless you’re extremely poor.

I told my husband about the social worker’s answers to my questions, which weren’t particularly concrete yet as she’s got to ask the government about what they’ll fund and search around for a suitable support agency. My husband was totally cool, as he said he’s willing to relocate should the right services not be available in his current town. He doesn’t particularly like his town anyway, but I suggested moving to this area because of what I thought were good services. Maybe I was wrong on that.

I am trying to be optimistic that I will be able to live with my husband sometime in the not too distant future. I’ll keep hoping for a positive outcome!

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