#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.

Grateful For the Right Care

Posted on by Astrid

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!

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.

#WeekendCoffeeShare (September 19, 2021)

Posted on by Astrid

Hi all on this late Sunday evening! Boy, am I late joining #WeekendCoffeeShare. I’ve had all my coffee for the day and even had my last soft drink. If you’d like one, I’m sure I can still pass you one through the Internet though. Let’s have a cup of coffee or another drink and let’s catch up.

If we were having coffee, I’d tell you that the weather is still pretty good for September here. Temperatures rose to roughly 20°C in the afternoon and it’s been mostly dry with some sunshine and some clouds. Today while in the car being taken back to the care facility from Lobith, my husband even said I had to wear sunglasses. Now sadly the sunlight wasn’t particularly bright to my (almost) totally blind eyes, but yesterday I’d gotten a headache from what might’ve been exposure to bright sunlight that I wasn’t consciously detecting.

If we were having coffee, I’d share that my husband and I had our tenth wedding anniversary today. We celebrated it yesterday with a large Domino’s pizza. We each had a milkshake too, but it was far too thick for my liking. I couldn’t finish drinking it, whether I tried the paper straw that came with it or my own silicone straw.

If we were having coffee, I would finally show you the picture of the present I gave my husband for our anniversary. It’s a polymer clay heart with the text “Assie houdt van je” stamped into it. Assie is my nickname (and no, in Dutch, there is no connotation to asses) and “houdt van je” is Dutch for “loves you”. There is magnetic tape at the back so that my husband could hang it on the fridge.

Polymer Clay Heart for My Husband

My husband really appreciated the gift.

If we were having coffee, I would tell you that the rest of my week was okay. I was a little sad and grieving the loss of my eyesight, as well as worrying about my upcoming care plan review. The review won’t be until September 30 and of course it doesn’t involve judgment and it isn’t a test.

However, I have been increasingly aware of my inner fight regarding my wish to stay here in Raalte and yet my feeling that I ought to be looking for another care facility or working towards living with my husband. In my paragraph about the bright sunshine, I almost wrote I was taken “home to the care facility” rather than “back”, as if our house in Lobith is less of a home to me than the care facility. My support staff would consider this progress, in that I’m beginning to feel safe here at the care facility. However, there’s an inner voice that tells me that this is betraying my husband. I know he supports me staying here for now, but I also know he struggles with the distance. Ugh, this is so hard.

If we were having coffee, lastly I’d share that I’m very curious about iOS 15, which will be out tomorrow. Like almost every year, there is one critic on the Dutch VoiceOver E-mail group who warns all of us to wait because it’ll be drama. This year though, the accessibility bugs seem not as serious as last year and especially the year before. Still, I’ll probably wait at least a couple of weeks until at least some of the other members of the group have actually installed the official release. I am really curious about live text in photos and improved VoiceOver image recognition though.

How have you been?

How Far I’ve Come #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday is “Where”. Linda, the host, is probably referring to the 9/11 terrorist attacks and where we all were at the time when she says that she has a feeling the subject of many posts will be the same. I, though, think I already shared where I was during the 9/11 attacks. I was in my room, writing in my diary about being used for a reality TV show. I mean, in the taxi home from school, I was secretly filmed while talking to the taxi driver and then was asked to consent later to it being shown on TV. I obviously refused. I was only fifteen. My mother said they should’ve picked someone at least five years older than me.

I don’t want to revisit that day though. Instead, I want to reflect on where I came from and how far I’ve come in those twenty years since the attacks.

On 9/11, I was in the ninth grade at grammar school or a classics-oriented high level high school in my city. I was being mainstreamed despite being multiply-disabled, because my parents believed I was just blind and oh so intelligent (which they considered a disability too in some ways, but it really isn’t).

Two months after the attacks, on November 2, 2001, I experienced a major mental crisis, which was of course brushed off by my parents. Six years later exactly, I did land in the hospital when experiencing another crisis.

I spent 9 1/2 years in the psychiatric system, 2 1/2 years living with my husband because the psychologist at my last psych unit felt I was misusing care and should be living independently. Then I went into long-term care. It’ll have been two years on the 23rd.

In a sense, I’ve only deteriorated in those twenty years. On 9/11, I proudly told that taxi driver how I was doing being mainstreamed as a blind person in a high level high school. Twenty years on, I live in a facility with people with severe to profound intellectual disabilities. Even then, I’m the one who needs the most care, getting one-on-one most of the time.

In another sense though, I’ve come a long way. I’ve definitely become more like me, the real me, who doesn’t care what her parents or teachers or support staff for that matter think she’s supposed to be like.

My Worst Fear

Posted on by Astrid

This week, one of Mama Kat’s writing prompts is to share one of your fears. I have a lot of fears and phobias, to be honest. I probably would even meet the criteria for generalized anxiety disorder if it weren’t for my autism, which encompasses a lot of worry in itself already. In fact, when my former psychologist had removed my autism diagnosis, she at one point considered diagnosing me with GAD.

She ended up diagnosing me with dependent personality disorder though. And, as much as I used to fight this diagnosis, it fits in some important ways: being left all alone is probably one of my worst fears.

I obviously didn’t tick that box when filling out the screening questionnaires for my independent second opinion after said psychologist’s diagnosis. I also ticked the box for “very difficult” rather than “impossible” on the WHODAS (assessment of level of disability) question on being on your own for a few days. Obviously, that only got me assigned a lower number on level of disability, not a different diagnosis, but I wasn’t aware of this. Besides, my diagnostician was able to see through my not having ticked that one box, so, though she didn’t diagnose me with DPD, she did recommend I work on my self-confidence.

Whether it means I’m pathologically dependent or not, I don’t care though: I fear being left to my own resources. And to be honest, no amount of kicking me in the butt has helped with this so far. Neither have so many years of independence training and therapy. I guess I just need to live with it. And that’s okay at least as long as the authorities aren’t going to see this as a reason to revoke my access to long-term care.

I mean, it’s not just fear. I fear being left to my own resources because I legitimately have no clue how to live my life independently on a daily basis. I can, with a lot of difficulty, perform most activities of daily living, such as showering, brushing my teeth and getting dressed. I now mostly get help with these, because it costs me a ton of time and energy having to do them on my own. For those saying I used to do these things by myself, I would like to add that this came at a cost to my dental health and physical hygiene. But if I really had to, I probably could do all of this. However, where it comes to housework, I’m pretty much lost. I cannot prepare my own food. Like, when I lived on my own in 2007, I ate bread without toppings because I couldn’t put them onto my bread. I wouldn’t die doing this for a few days, of course, and there the “very difficult” answer on the WHODAS may be correct. But it would be my worst fear come true.

Mama’s Losin’ It

#WeekendCoffeeShare (July 9, 2021)

Posted on by Astrid

Hi everyone on this partly sunny and warm Friday evening. I’m joining #WeekendCoffeeShare. I’m afraid it isn’t time for our evening coffee for another hour yet, but I can offer you a glass of water or of course make you a Senseo coffee in my own coffee maker. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share about the topiramate. Yay, I finally started it and yay for no side effects! That being said, I’m not noticing any positive effects either as of yet and my nurse practitioner said it’ll be four to six weeks before we’ll increase my dosage. That disappointed me a bit, given that the max dosage for PTSD symptoms is six times what I take now, so it’ll take at least six months to get to that level and then if we decide this medication isn’t for me after all, six more months to get back off. Maybe I’m wrong here, since I’ve never had a medication not work on me at all before. I’ll discuss all this with my nurse practitioner when I next see him. Of course, here’s hoping the medication will start working in a few weeks.

Next, if we were having coffee, I’d share that I’ve experienced an increase in motivation lately. This has been going on for a few weeks already, but I’m noticing it might stick around longer now. Usually, it only lasts for a week or so and then diminishes again.

I have not been as crafty this past week as I was last week, but still I’ve not been disappointed with my level of activity.

If we were having coffee, I’d tell you that I talked with the care facility’s behavior specialist yesterday. We decided to let the moving care homes issue rest for a bit, but get back to it in about two months’ time. I really do hope we can work on making my life in my current care facility better, as she’s right that every place has its positive and negative sides.

If we were having coffee, I’d moan about the rapid increase in COVID cases here in the Netherlands. We’re due to get another press conference from the prime minister at 7PM. I’m not expecting any measures that will affect me directly, but still, it sucks.

If we were having coffee, I would share that I’ve been spending quite a bit of money on my hobbies lately. I ordered several new essential oils, including the Roman chamomile I mentioned on Wednesday, as well as a full liter bottle of sweet almond oil. I also ordered a kitchen scale. Not a talking one, as they’re too expensive for my liking. I’m hoping all my supplies will arrive either tomorrow or next Monday.

If we were having coffee, lastly I’d tell you I’m loving looking at sites for bath and body recipes. I already created a pink grapefruit and lemon massage oil. Since both essential oils are phototoxic, I took extra care to dilute them properly and so far, so good. I used the oil on my hands yesterday and am absolutely fine despite the sunshine now.

How have you been?

Currently (July 2021)

Posted on by Astrid

I usually don’t participate in the Currently linkup, in part because the prompts don’t always inspire me and in part because the posting day coincides with the Insecure Writer’s Support Group. I still follow Anne’s blog in my feed reader though and today, I decided to check out her post. It’s quite an easy one this month, so here goes.

Eating

Way too much. When I would initially be prescribed my currently latest medication, topiramate, the psychiatrist told me that it may cause me a decreased appetite. So far, not so. It’s not a problem though, since, even though I’m overweight, my weight is stable.

Today, my day activities staff took me to the local marketplace and we bought fish and chicken wings for lunch and I bought a giant waffle called “stroopwafel”.

Now in case you’re thinking I’m chronically overeating, I normally eat a pretty balanced diet.

Feeling

Okay’ish. I’ve had a few rough weeks, as regular readers of my blog will know. However, I still find moments of joy, particularly when I’m crafting.

Going

To Lobith. For those visiting from the linkup, I live in a care facility in Raalte, Netherlands. My husband lives in Lobith, about a ninety-minute drive away. I normally go to Lobith about twice a month, but I went there both last weekend and the weekend before for my birthday celebrations.

Ordering

Most recently, some jewelry-making supplies. However, I already have my eyes on a number of relatively affordable essential oils too. I mean, oils that would cost over €50 for a 10ml bottle normally but I can get for €20 at some stores apparently. Think Roman chamomile. I know, it’s probably not the best quality, but my wallet has a will of its own. I need to restock my sweet almond oil too, as I just used most of what I had left for a massage oil yesterday.

Realizing

That I may need to stop evaluating my life and start living. This is sort of the take-home message I got from my psychiatric nurse practitioner at my last appointment on Monday. I was talking about possibly wanting to find myself another care home and compulsively looking for it. I mean, checking out care agencies’ websites on a daily basis for suitable homes. This really isn’t helping, since even if I need or want to leave my current placement, I’ll need guidance on finding myself another place to live. As my nurse practitioner said, I’m evaluating my life each day again rather than seeing each day as just the day it is.

Unfortunately, part of me is feeling as though his message means I need to accept a rather difficult living situation just because it isn’t time to evaluate yet. I can see his point about not checking out care agency websites daily, but the compulsion is also hard to break, as this is what I’ve been doing pretty much my entire adult life. For those not aware: I lived in one temporary placement or another from age nineteen until I moved to the current care facility in 2019. It’s only natural that I cannot believe that this is where I can stay.

What’s up with you?