Why I’m Content in My Current Care Facility #31Days2021 #Blogtober21

Last Thursday, like I mentioned before, I had my care plan review here at the long-term care facility. It was my first one, even though I’ve been living here for two years, because last year’s got canceled due to COVID. As we were discussing my progress over the past two years and my wishes for the future, I said that I’m about 95% sure I want to stay here. That’s huge for me, as I’ve been constantly on the lookout for another place to move to particularly over the past year.

This brings me to today’s prompt in the 31-day writing challenge: content. I at first wasn’t sure what to write about on this word. I mean, I wanted to write why I’m content living here, but somehow it felt kind of off. Then I read Lesley’s contribution to the challenge, Contentment Without Complacency, and realized that being content where you are doesn’t mean there’s no ground for improvement. So, with no further ado, I’m going to share why I’m content living in my current care facility.

First of all, I love the way my staff support me. As regular readers of this blog will know, I’ve had quite the journey through the care system. I resided in a mental hospital for 9 1/2 years, where there was constant pressure on meeting goals and getting better. Before that, I lived on my own and, before that, in a training home. As the name suggests, it was heavily focused on independence training.

For those not aware, my current care facility primarily caters to people with an intellectual disability. All other clients in my specific home have severe to profound intellectual disabilities. For this reason, my staff are used to helping them with everyday activities such as mealtimes, personal care, etc.

They are also used to clients needing staff to realize that correcting challenging behavior will not be effective. Whereas in the mental hospital, I used to be often left to my own resources if I’d done something self-destructive, now my staff provide me with affectionate care. This might be seen as reinforcing the behavior, but in my experience, quite the opposite is true.

In addition to liking my staff’s care approach, I like my fellow clients’ lack of social expectations of me. One of my fellow clients will occasionally come to my room asking me to wish him goodnight, but other than that, the clients hardly interact with me. One wish for the future that I voiced at my care plan review, is more interaction with other people, particularly those of higher intellectual level. I do have a couple of friends in other care homes that are part of the complex, whom I talk to when going to the day center or when outside. I however am grateful that I don’t live with these people 24/7.

I also like my room. Some staff call it an apartment, since I have my own bathroom and small kitchenette. I also have my own balcony. I honestly haven’t had a better room in any of my previous places in the healthcare system.

Overall, the reason I’m not 100% sure I want to stay here, doesn’t seem to have to do with my facility itself. It is rather related to my own anxieties and insecurities. Of course, things could always be better, but that doesn’t mean I’m not content exactly where I am right now.

Why Do I Need One-on-One Support? #31Days2021 #Blogtober21

Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.

Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.

Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.

I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.

This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.

Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.

If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.

I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.

Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.

I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.

Grateful For the Right Care

Today’s prompt for Five Minute Friday (#FMF) is “Care”. Most writers, I’m assuming, are writing about how God takes care of them, how they should not be distracted by the cares of this world, how important it is to care for others and other spiritual meanings of the word “care”. I do find these important too, of course, but was particularly impressed with the timing of this prompt. After all, yesterday marked my two years being in the long-term care facility.

I cannot keep from thinking that God put the people and circumstances in my life that led to me being here now. He did, as He has a plan for all of us. However, since I didn’t become a Christian till late last year, before then it was easy to consider these circumstances, these people, all working together to get me the right care, just chance.

I want to use this space to give thanks for the blessing that is my being in long-term care, with my current support team and my current care plan. I also want to give thanks to all the people God put into my life who worked and in many cases continue to work so tirelessly to keep it this way. My support coordinator and support workers from when I lived with my husband. My psychiatric nurse practitioner at the time. The Center for Consultation and Expertise coordinator and the consultant she hired to help get me the right care. My staff at my old day center. My staff, the manager and behavior specialist here at the long-term care facility. The people in authority who decided whether to grant me long-term care funding at all and eventually decided to grant me the one-on-one I get now. Last but not least, my husband, who sticks by me through it all.

Looking back at all the time I’ve been busy fighting for the care I get now, I realize some of the events are nothing short of miraculous. I am so intensely grateful for this!

The Shifting Image of My Care

In September of 2006, when I was still blogging on DiaryLand, I wrote an entry about seeing my life in black and white. I meant not just my life in general, but my care needs in particular. I wrote said post in response to a meeting I’d had with a psychologist several weeks earlier because my behavior at the training home I lived in at the time was spiraling out of control. The psychologist asked me where I saw myself in three years’ time, referring to care needs.

In my response on my blog, I said that I constantly had two images in my mind about what my life would be like, one positive and one negative. These were represented by the two most important alter personalities I had at the time, Carol and Jane.

Jane was fiercely independent. She wanted to live completely on her own without any support, except for maybe a weekly visit from a person to read her mail and the occasional help with deep cleaning.

Carol, on the other hand, saw herself as needing more support. I, at the time, made a point of clarifying that my “negative” image didn’t mean I needed 24-hour care, but that I needed significant help beyond that considered “normal” for someone who’s just blind.

Six months later, I had already discovered that the positive image wasn’t going to come true, yet I shifted my two images. I started to believe that the “good” outcome would be the situation I would live in at my student apartment, which included sixteen hours of support a week. The “bad” image, then, became needing 24-hour care.

You all probably know that the “bad” image eventually came to be true. When I wrote about the 2006 post on my original WordPress blog in 2009, I said that the situation couldn’t get much worse than it had been already at the locked unit. If another three years later, it was worse, I reckoned that’d mean I was in prison or a homeless shelter and hence wouldn’t have access to the Internet.

It didn’t get worse, of course, right? Or did it? I mean, I lived with my husband for some years, but eventually got admitted into long-term care. I now have one-on-one support most of the day. And yet the images are still there.

Jane is still saying I should live independently. Not with my husband, mind you, but fully on my own. Then at least I can’t manipulate people into giving me more and more care and, by extension, cannot drive people away.

There’s another image haunting me. This image wasn’t in my mind back in 2006, or at least I wasn’t aware of it. It is the image of a girl, aged around sixteen, who was a patient in a psychiatric hospital in the late 1990s, where she had been restrained for weeks on end until her parents sought media attention. This is the true worst-case scenario I see in my mind now. But the worst part isn’t the restraints: it’s the fact that the girl was often left completely alone.

I had a few incidents of physical aggression towards staff recently. The staff keep reminding me that they realize that I don’t mean to be aggressive and that they won’t leave me if I am. I hope the worst-image alter, whom I call Rachelle, won’t prove them wrong.

Free to Belong in Long-Term Care

Today, one of Mama Kat’s writing prompts is to write a blog post inspired by the word “Free”. This definitely appealed to me, as a survivor of childhood trauma as well as abuse in the psychiatric system that continued until I was 30.

Last Tuesday marked the five-year anniversary of the opening of my current care facility. It also was the day I was here eighteen months. Five years ago, I myself still resided in the psychiatric hospital. Some of the worst abuses of power of my psychiatric hospital stay hadn’t even happened yet.

As a child, I suffered significant trauma both at home and at school. Most of it left only invisible wounds, but these are as deep as any physical wounds could’ve been.

Like I said on Sunday, my parents fought my schools, especially special ed, all the time. As a result, I endured frequent school changes and was at the center of conflicts pretty much my entire childhood. Whenever I had adapted to a school environment, I was removed again. I also didn’t have the opportunity to form lasting friendships. The feeling that I didn’t belong anywhere, was instilled in me from an early age.

When I finally moved to the mainstream high school my parents deemed best for me, I knew within a month that I didn’t belong here either. I managed to finish the grammar school program and graduate in 2005.

Then started my long journey through the adult disability and mental health care systems. My parents wanted me to go to university and live independently right away, but I asserted myself and sought help first.

I eventually lived independently for three months in 2007, but then landed in a mental crisis and was hospitalized. Over the following 9 1/2 years, I endured a lot of ongoing trauma at the hands of the psychiatric system. I eventually got kicked out of there and started living with my husband. That didn’t work out either. That is, our marriage is still strong, but I couldn’t cope living semi-independently.

All this to say, now I’m in long-term care and finally free. I am able to make my own choices now. It’s still a little hard to grasp that I am asked to sign for any restrictions to my freedom that may be needed for my safety. In the psychiatric hospital, seclusion and restraint were just shoved down my throat even though I was an informal admission. Either that or I was basically left to my own resources, since, being diagnosed with borderline personality disorder, I needed to take responsibility. Both of these extremes left me feeling unsafe.

Now, I not only am asked to sign for restrictive measures, but I am allowed to request extra support. This allows me freedom as well as safety. I am free now and yet I belong. If only I felt this way already. That may take a long while still.

Mama’s Losin’ It

PoCoLo

#WeekendCoffeeShare (November 15, 2020)

Hi everyone! How are you doing? Today I’m joining in with #WeekendCoffeeShare. I just had my afternoon coffee, but there’s still plenty left for you all. We also have various flavors of tea and there’s cold water in the fridge I think. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week was a rather rough one. I am already feeling slightly better now though. I’m still struggling to keep busy when I’m alone, but it’s okay.

If we were having coffee, I would tell you that the weather is pretty mild for november. It’s raining some of the time, but it’s also sunny some of the time and it’s pretty warm for this time of the year, roughly 15°C.

If we were having coffee, I would be proud to tell you that I got in over 65K steps this week so far. That’s a record! I’m probably still going for another walk this evening, so I may break my active heartrate zone minutes record of last week according to my Fitbit too.

If we were having coffee, I would tell you that I’m so immensely grateful for the extra supports my staff put in place for me. Like I mentioned earlier in the week, I was extremely depressed earlier and was seeing no way I could manage at this care home or in this world as a whole for that matter. Thankfully, I got some one-on-one support in the evenings, which are the hardest for me.

I did feel some pressure when a staff said she hoped that in a few weeks, I would not need as much support. This caused me some considerable anxiety, as I worried I’d be kicked out of this home if I didn’t improve in a few weeks. The staff didn’t mean it that way though.

If we were having coffee, lastly I would tell you that my husband came by yesterday. We drove for a bit and then went for a short nature walk. My husband had also brought me some apple pie his father had baked for his birthday. I did struggle to eat it properly whilst in the car, which I felt intense shame about. My husband was okay with it though.

Things Can Only Go Up

Like I mentioned earlier in the week, on Sunday I was in a major crisis. On Monday, the manager came to reassure me that I wouldn’t be kicked out of the care facility. I wasn’t convinced though and got stuck on a comment that seemed to invalidate my need for more support.

On Tuesday and Wednesday, I cried my eyes out. I felt that there’s no place where I truly belong. It didn’t help that my husband said I experience a lot of internal stress so wherever I go, I’ll take that with me. I’m pretty sure he meant it in a more positive way than I took it. However, I took it to mean I’m too wicked and needy and stressed for this world.

On Tuesday, I started envisioning a place I belong and don’t feel pain. Until that point, I had always assumed there must be a better place for me out there within this world. This had led me to check the care agency’s profiles for other homes pretty much on a daily basis. As of last Tuesday though, this “better place” became more like the afterlife. It wasn’t that I wanted to die, but I wanted the intense pain to end.

On Wednesday, I cried for what seemed like forever. I was crying alone in my room and at one point had the sense of clarity to press the call button. There is this extra staff who normally helps out between 6PM and 8PM. She came into my room and said she’d stay with me for the entire two hours. I cried and talked and let all my feelings out.

At one point, this staff asked whether I’d heard of one-on-one support. I had, but asked her to clarify it anyway. She asked me whether that sounded like something I might benefit from. I finally overcame my intense shame and said “Yes”.

Yesterday, I started the day off pretty sad and had some crying fits throughout the day. At about 4:30PM, a staff came to soothe me and said that that evening, I could sign something to get me more help. I wasn’t sure what she meant. Turned out she meant a letter to the manager requesting more support for me.

My assigned staff wrote the letter, with my input, that evening and I signed it. Now of course we still need to wait for the manager’s response. She may also need to request extra funding for me from the authorities. Even though I’ve known about one-on-one support for almost as long as I’ve been at this facility and have secretly wished I could get it many times, I don’t know that much about the technicalities. That’s not my responsibility though.

From now on, I believe the only possible way is up. Even if I don’t get the one-on-one support I need, the staff have a clearer understanding of my needs and will be able to help me more adequately. Also, with my signing of the letter, I sort of also signed for my wish to stay at the current home. I originally intended on breaking my habit of looking for another place today, but still checked. I wasn’t as affected by what I saw though.

If I Have a Good Day…: Ramblings on Fear of Joy

Today is a slightly better day than yesterday. I actually managed to make a soap for a staff and also go on walks. I even reached my daily step goal! In addition, I have been exploring my faith.

Still, fear of joy is haunting me. Until a few years ago, I never knew it was a thing. That is, I had read about it on a fellow trauma survivor’s website. That was many years ago already, but I never quite understood what it meant. I never realized I experience it. And yet I do.

I think this fear is intertwined with my core belief that, if people truly knew me, they’d abandon me. It is the exact opposite, in a way, and yet it’s similar too. I mean, if people abandon me regardless, why bother trying my best?

Deep down, I feel that people are going to abandon me if they find out how wicked I am. I also, conversely, feel that people are going to abandon me if they think I can cope fine on my own. And these different views are not mutually exclusive. After all, my psychologist at the mental hospital thought I was bad and manipulative, and yet she also thought I would cope fine on my own.

My belief that people don’t see the real me, the wicked, attention-seeking, manipulative me, makes me want to disappear. It makes me feel ashamed of my needs. But it also causes intense anger, because at the core maybe I want to prove myself right.

On the other hand, my belief that people don’t see my genuine need and think I can cope fine on my own, leads to actual care-seeking behavior. It’s not the same as attention-seeking, but maybe in my current context of a care facility, it’s worse.

I have a sense that both of these beliefs cause me to fear joy. On Sunday, I felt abandoned by the staff. Then on Monday, I was trying to “prove” that I’m more needy and hence more wicked than my staff believe. Today though, I’m feeling slightly better, but this scares me. It scares me because I’m convinced I’ll be expected to cope on my own if I’m managing.

Maybe that psychologist was right after all that I have dependency issues. I worry the staff will agree at some point and this in fact reinforces care-seeking behaviors. Which, of course, is counterproductive.

A Time I Decided to Speak Up for Myself

The weather has cooled off some, but I’m still somehow lacking motivation to do much. For this reason, I scrolled aimlessly through some journaling prompt books I have in my Kindle app. In one of them, one of the prompts that caught my eye was to recall a time when you spoke up for yourself.

I am usually not one to speak up for myself easily. Especially not when the person I’m needing to advocate to is an authority figure. The memory I’m going to describe involves my last psychologist at the psychiatric hospital.

She was somehow convinced that I have dependent personality disorder. There are good reasons to think so, but her reasons were not among those. To put it bluntly, she thought I misused care.

More importantly than her diagnosis of DPD though was her removing my autism diagnosis that I’d had for nine years. She believed that I could not possibly be autistic because I had a brain bleed as an infant and that instead my diagnosis should be some form of brain injury. She ended up putting hydrocephalus (which I’d developed as a result of the brain bleed) on axis III of the DSM-IV classification and that apparently should suffice in explaining my difficulties. That plus, of course, DPD. Well, it didn’t.

Like I said, I have trouble sticking up for myself. This is indeed a DPD criterion. Honestly I don’t even care whether I might have DPD actually. I can see how I have some traits. But DPD is different from care misuse. And that’s what my psychologist was accusing me of.

So I finally decided to stand up for my rights and demand an independent second opinion. This was extremely hard and my psychologist had been successfully trying to talk me out of it before. Not this time though. In February of 2017, I had an appointment with a clinical neuropsychologist at Radboud university medical center in Nijmegen. Three months later, on my would-be discharge date from the mental hospital, I got my autism diagnosis back.

Autism, of course, doesn’t explain everything I experience. I might have DPD too. And God knows what else. But I don’t misuse care.

My psychologist, interestingly, claimed that I spoke up for myself really well. That’s a rather contradictory statement to the DPD diagnosis. After all, dependents are often seen as passive. I still wonder why she didn’t have the balls to “diagnose” me as a malingerer.

Thankful Thursday (July 23, 2020): My Care Team

Hi everyone! How are you all doing on this warm Thursday evening? I’m doing a lot better than I was earlier this week. I could actually do an early gratitude list, as there’s more than one thing I’m grateful for. A simple list wouldn’t do justice to how huge these gratefuls are though. Let me share. I’m joining in with Thankful Thursday.

First, I still need to update you all on my appt with my nurse practitioner and CPN on Tuesday. It went better than I expected. The outcome is that my nurse practitioner is going to talk to the psychiatrist and see if he can find us a psychologist to do trauma therapy and work on our emotion regulation issues. I don’t remember all the details of the meeting, but at one point, I/someone in me blurted out that we’re in Facebook groups for dissociative disorders. I quickly added that really that’s none of my nurse practitioner’s business, but still we feel a lot of shame surrounding this.

Then on Tuesday evening, a discussion erupted on Twitter about the ISST-D’s guidelines for diagnosing and treating people with dissociative disorders. There’s this article from 2001 that’s still being used to weed out alleged fakers. It uses such things as being open about your DID or trauma to people other than a few close confidants, showing no obvious shame when talking about your trauma, being in support groups for DID, etc., as apparent proof that you’re fake. Now I must say I’m still conflicted about going the actual trauma/DID assessment route, but this did trigger us. However, my support staff are on my side.

We were still recovering from the shame about all this when we heard the main good news I was planning to share here. I got a higher care profile allocated to me by the long-term care funding authority. I still can’t quite believe it, but I’m so happy. The application hadn’t gone out till last week, but this afternoon, my staff got a call that it’d been approved. I’m still waiting on the letter in my government inbox confirming it, but this is really good news. I now have the highest care profile for blind people in the long-term care system.

I was feeling a bit disconnected when I heard the news. Like I said, I still can’t quite believe it, but it’s such amazing news. I’m so glad my staff were so perseverant that they actually applied for this.

Looking forward to hearing what you all are grateful for today.