Finally, the Meeting on My Care

Posted on by Astrid

Hi everyone. How is your Friday going? Mine’s okay. Guess what? The meeting between me, my assigned staff, my mother-in-law and the behavior specialist finally happened today. Let me share.

The behavior specialist opened the meeting by saying we needed to discuss how I’m doing now and how things have gone since our agreements at the last meeting. To both, I could give relatively short answers: I’m doing crappy and the agreements led nowhere. Then, my mother-in-law helped me word my wishes for the meeting: to discuss my wish to get insight into my care plan, including allocated extra care hours (what I call “one-on-one” here), and to discuss my wish to start the process of finding a more suitable home. The behavior specialist is going to ask my support coordinator to get me insight into the care plan.

I did go into detail about why I want insight, namely the fact that I keep being told I ask for more than I get funding for. The behavior specialist told me she had heard that indeed the home provide more extra care than they get funding for. Whether this refers only to my one-on-one or to the thirteen hours a day total that there’s an extra staff member, I couldn’t get clear. I was quite worried in the former case, because I really can’t cope with less one-on-one than I get now.

My assigned staff confirmed that indeed sometimes – quite regularly in fact – my one-on-one that I’m supposed to get according to my day schedule is cut short due to for instance another client acting out. She explained that my staff is the first to come to their coworkers’ rescue. This is somewhat understandable, because the other extra care client at least on the surface appears to need her one-on-one more and it isn’t like staff should be beeping for other homes’ staff to come to their rescue when there’s one available right in my room. However, I do suffer significantly from this. Yesterday, due to this situation, I self-harmed twice.

The things I said could improve my care here, according to my staff, weren’t realistic. This is understandable, among other things due to the fact that I am usually supported by temp workers. We might be able to tweak my day schedule and the list of support agreements a little bit though.

Then we got to discuss what type of home I’m looking for being moved to in the long term. My assigned staff is pretty certain that I shouldn’t be placed in another intensive support home, but the behavior specialist didn’t seem so sure. She pointed out that some staff at my old care facility had struggled to support me. She also made it clear that there’s this rigid divide between support and care, where you either need behavioral support or you need a care-based approach. Something inbetween doesn’t seem to exist.

The behavior specialist asked me whether I’d mind having to live in a smaller space, like just one room, not a separate living room and bedroom. I told her I had that at my old care home and considered that room pretty spacious. I know most rooms at care-based homes here on institution grounds are smaller than what I had there, some actually with shared bathrooms. I don’t even mind that, although I’d need a staff to make sure it’s clean when I need to use it.

We also discussed my preference for staying with this care agency, but if this agency doesn’t have a suitable home, I don’t mind moving to another either. I said, and my husband confirmed this when I texted him about it, that it’d be ideal if a new home wouldn’t be too far from where he lives but that isn’t a top priority.

Overall, the meeting went quite well. At least, my assigned staff understood my point of view and the behavior specialist is willing to start the process of finding me a more suitable home. She also admitted she hadn’t realized when placing me here that it’d be as chaotic as it is here.

Thankfully, my assigned staff isn’t going to give up on me. I specifically asked about this, because several staff have been saying things along the lines of: “Why should we even try our best to make things better if you want to leave anyway?” I understand big changes aren’t going to happen if I’m leaving anyway, but then again they aren’t happening if I’m not leaving either. Tiny things that will make my life easier, can still be done though.

#WeekendCoffeeShare (October 3, 2021)

Posted on by Astrid

Hi everyone on this rainy Sunday. I’m joining #WeekendCoffeeShare this afternoon. I may add another post for Blogtober and the 31-day writing challenge, though neither challenge requires you to follow a topic or prompts. In this sense, this post could count as my daily post for October 3. We’ll see if I can still find time to write a post on today’s optional prompt too.

As usual, I just had my afternoon coffee, but I’m pretty sure the other clients are still having theirs. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week is a bit meh. It seems it’s the beginning of fall that’s causing me to feel more depressed and less inspired than usual. I have been going for a few walks over the week, but not many due to the rain. I also hardly did anything crafty. Today, I spent a lot of the morning and early afternoon in bed.

If we were having coffee, I’d share about my care plan review last Thursday. Like I said in my previous posts, it went mostly as expected. It did create some stress in me related to the upcoming reassessment of my one-on-one care. The behavior specialist also told me at this meeting that she’s going to work at another care facility that’s part of this agency, so she will no longer be assigned to my case. It’s not yet decided who her successor will be, but that should become clear pretty soon.

If we were having coffee, I’d tell you that, the evening after the care plan review, my assigned home support staff left her shift early due to being sick. Everyone else is telling me she just has the flu, but I somehow got it in my had that she is suffering burnout and it’s my fault for having sucked up her energy too much.

This situation led to a bit of a crisis Friday night. I left my room initially looking for the late shift, but she’d already left the building. However, my room-leaving detector didn’t alert the night staff yet, probably because it was just before 10:30PM. The people who would receive my alerts at night, are at the main institution in another village and they are then supposed to call the night shift here. In other words, there is no way I can alert the night shift here directly. I went looking for help, but the outside door of the home was already locked.

This led to a bit of a panic and I went into dissociative mode. I grabbed a chair and climbed over the half-door into the kitchen (the kitchen is locked at night to prevent me entering it and self-harming). I tried to self-harm in several ways, but thankfully didn’t really get hurt. When the night staff came to get another client to bed, she saw me and helped me to my room.

If we were having coffee, I’d tell you that, despite all the troubles, the week will likely end on a positive note. Several of us clients have not received meal delivery service meals this entire week because we were supposed to be emptying out the freezer. This did mean I got a lot of the same meals this past week and today I said, if I got noodles again, I’d ask my one-on-one to drive me to the supermarket so I could buy a salad or something. Turned out one of the other clients whose freezer was supposed to be emptied, didn’t fancy his meal for today either, so the staff agreed to order food from the local Italian restaurant. I will be getting a tuna pizza.

How have you been?

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

Posted on by Astrid

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

Posted on by Astrid

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.

An Eventful Wednesday

Posted on by Astrid

Hi everyone on this Wednesday evening. The weather was beautiful today. It was cold in the morning, but sunny and about 21°C in the afternoon.

This morning, I had an appointment with my community psychiatric nurse. I hadn’t seen her in four weeks, as two weeks ago she had had to cancel due to a crisis situation. This time, I was able to talk through some of my struggles. I vented some of my grief with respect to my blindness. I ended on a positive note though, sharing the wonders of VoiceOver Recognition.

At 1PM, I had a quick dental check-up. The dentist comes to our day center four times a year for these, so I didn’t have to travel. Thankfully, all was well and I was literally gone within minutes.

Then I had a talk with my support coordinator about my upcoming care plan review. We had to discuss my risk inventory. This is a long list of possible risks someone can experience, such as of choking, falling, epileptic seizures, aggression, etc. With each box, the staff have to tick of “Yes” or “No” and if yes, elaborate on the risk. I disagreed with several “No” answers, but then my support coordinator explained that this is within the current care situation. For example, there is no risk to my personal hygiene because my staff are there to help me with this.

I did get my coordinator to add a “Yes” to risks re social media use because my Internet use can often trigger me and lead to meltdowns. I did ascertain that these risk assessments are not necessarily associated with restrictive measures. In other words, just because there’s a risk associated with my Internet use, doesn’t mean they need to restrict my online activity.

Later, I realized there really needs to be a “Yes” in the box on risks associated with overweight too. I had said this at the meeting but my coordinator had said that since I don’t suffer with sores due to fat or the like, there’s no risk. I do feel there is, given that my BMI is above 30 and I need support in maintaining a healthy’ish diet.

I went on three walks this afternoon and evening. On my way back from one of them, my one-on-one asked me whether I wanted to photograph the chickens near the day center. A client at another care home here has always wanted to have chickens and he finally got his wish granted a few weeks ago.

Unfortunately, only one of them lays eggs so far. The guy whose chickens these are says the other one’s crest needs to get redder before she will lay eggs. My husband said it might actually be a rooster though. I hope not.

Adult Separation Anxiety

Posted on by Astrid

One of the consultant’s comments in my emotional development assessment was that I have a lot of separation anxiety. The rest of my care plan is also full of how I’m afraid to be alone. A little over three years ago, my psychologist at the psych hospital said basically the same by diagnosing me with dependent personality disorder (DPD). Then, I vehemently disagreed. It wasn’t just out of anxiety that I needed lots of care, after all.

Another reason I was in denial of my separation anxiety/DPD, is the judgmental way in which my psychologist approached the matter. She felt I just needed a good kick in the behind and for this reason discharged me from the mental hospital almost with no after care.

Of course, that’s not the way to treat dependent personality disorder. Besides, one of the main features of DPD is not physical dependence, but unquestioning compliance, which I certainly don’t display. I don’t lack assertiveness at all.

I want to clarify here that, at least in my case, I’m not unwilling to be alone. I’m alone right now as I type this blog post. When I’m mentally well, I can be quite happy being alone, as long as I know there’s someone available if I need them.

It’s all too easy to judge people with adult separation anxiety disorder or DPD. Usually though, it’s much more helpful to approach them from an emotional development angle than from a character flaw angle. I again at least don’t want to ask for attention all the time. The things that I get help with from my staff, even though I can sometimes do them myself, I don’t ask for help with because I’m just lazy. In fact, it’s often easier to do some self-care tasks quickly by myself than to ask for help, but then the tasks don’t get done thoroughly.

I have for the majority of my life figured out how to care for myself alone. That’s because, despite all the independence training I got, no-one started with the very basics. Besides, like I said yesterday, I don’t usually distinguish between feelings of hunger, pain, etc. Isn’t it a bit odd then that you’d expect me to remember to do the day’s self-care tasks (which are many!) and actually do them all by myself?

I am so glad my current care facility isn’t as judgemental as my former psychologist was. My current staff don’t assume unwillingness, like she did. We may not find out soon yet what will turn out to have been the best approach. It will also probably depend on what measure of success you use for the outcome: independence, mental wellbeing, cost-effectiveness, etc.

Emotional Development

Posted on by Astrid

Last Tuesday, I discussed my care plan with my support coordinator. She needed to update it because the facility is going to apply for a higher care profile for me. Besides, it needed to be made current for my living in the facility rather than at home anyway.

My care plan is divided into several sections, including general health, diagnoses, intellectual, emotional and social functioning. The part about my intellectual functioning unfortunately still lists my IQ as measured 20 years ago. Since it according to the test dropped some 35 points between 1999 and 2017, I’ve wondered whether this is merely due to Flynn effect or something or I’m actually experiencing cognitive decline. Still, my IQ as measured in 2017 was above-average, so it doesn’t really matter for long-term care funding anyway.

In the part about my emotional functioning, I saw for the first time the results of the emotional development impression the consultant from the Center for Consultation and Expertise had written in 2018. This was a bit shocking to be honest. I knew I’m thought of as functioning at an emotional level equivalent of a toddler. It was difficult though reading that in several areas, i’m supposed to function at a level of less than 6 months. This wasn’t surprising though.

For instance, one area in which I function at a level of 0-6 months, is body awareness. The reason the consultant listed was my inability to make contact when overwhelmed. I would add to that my inability to distinguish different bodily sensations, such as hunger and pain. I tend to react to everything that’s physically overwhelming by acting in a self-stimulatory way. The consultant also listed my craving physical stimulation such as rocking as a reason for this.

I also apparently function at 0-6 months with respect to differentiation of emotions. In other words, I don’t do that. The consultant explained that I have a lot of distress and am hardly ever relaxed. While this is true, I’d like to add that I don’t generally distinguish between different strong emotions. Like, at all. Each strong emotion feels equally overwhelming to me, even strong “positive” emotions.

With respect to verbal communication, my level is 3-7 years. Because this scale was developed for people with intellectual disability, the highest level is 7-12 years and I in some ways expected to be qualified as functioning at that level. I do with respect to handling familiar tools, such as my computer. However, the consultant apparently recognized my less-than-great (understatement!) language comprehension.

It was rather interesting to read this assessment, even though of course the concept of mental age used here is a bit off to say the least.