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!

An Eventful Wednesday

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)

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

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

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)

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)

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?

#WeekendCoffeeShare (July 2, 2021)

Hi everyone! Can you believe the first half of 2021 is over already? I certainly can’t. Today, I’m joining #WeekendCoffeeShare. I just had my afternoon soft drink. If you want one too, I bet there’s still some left in the fridge. I can also make you a Senseo coffee if you want it. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk a little about the weather. It’s okay. Most of the past week, it’s been raining, but I still got time to go outside inbetween rainfalls. It was a bit chilly for summer early in the week. Today and over the weekend, temperatures are supposed to rise to above 20°C.

If we were having coffee, I’d also tell you that most of the pandemic restrictions were lifted last week. They however had only been lifted a few days when news got out about the delta variant of the coronavirus soon becoming dominant. Thankfully, the Netherlands has quite a high vaccination rate, so I have my hopes up we won’t enter a full lockdown come September. After all, my husband and I celebrate our tenth wedding anniversary on September 19 and we really want to finally be able to do something fun.

If we were having coffee, I would share that this week was a truly mixed bag mental health-wise. I did enjoy some activities, like jewelry-making. Last week was my 35th birthday and I got a bunch of supplies as a present. When being engaged in creative activities, I do genuinely feel some level of contentment, if not happiness.

However, there have also been times when I felt incredibly left out and hopeless. Like I said two weeks ago, the manager indicated that I cannot get more support than I’m getting now. Sometimes, I’m okay with this, but at other times, it really frustrates me.

If we were having coffee, I would share that I’ll finally start my topiramate this coming Sunday. The longer it takes, the less hopeful I am that it will actually help. We’ll see though.

If we were having coffee, I’d tell you that, on Wednesday, some type of staff support person came to observe and help the staff with some situations with other clients and with me. She offered some ideas for easing transitions for me. When I’m doing okay or sort of okay, they help, but when I’m very distressed, they don’t. I’m still unsure as to how I can ease the many transitions I face during the day.

If we were having coffee, I’d update you all about my situation with the possible UTI I talked about two weeks ago. Well, it isn’t a UTI. What it is, no-one seems to know or care about. I was told to take naproxen and paracetamol and, when this week I reported that they helped some, was just told to continue taking them for another month. A month! I mean, seriously?! I feel quite frustrated about this.

If we were having coffee, lastly I’d tell you that my sister and her family are visiting me and my husband in Lobith tomorrow. My husband gave me the choice between taking a ParaTransit taxi and him picking me up at 10AM. Since my sister won’t visit till 3PM, I decided to take the taxi. I still have my entire kilometer allowance, since I haven’t felt comfortable yet using the taxi due to COVID-19. My taxi should arrive here in Raalte by 12:30PM. It’s normally a little under a ninety-minute drive to Lobith, but the taxi service might be late and/or combine my ride with someone else’s. However, if I schedule my ride earlier, I won’t be able to have lunch. Fingers crossed the taxi won’t be late.

How have you been?

My Declaration for My 36th Year of Life

Like I mentioned before, I turned 35 on Sunday. A few months back, I had downloaded a birthday journaling tool from the International Association for Journal Writing website. I didn’t really get to journal about any of the prompts in it, but one that stuck out to me is to write your declaration or decision for the upcoming year. It sounds a bit like an affirmation, but I’ll not just repeat it to myself. Rather, in this post, I’ll describe steps I can take to make my declration work.

First, my declaration is: “I will thrive, not just survive.” I will focus the 36th year of my life on improving the quality of my life in some major areas.

I have been debating whether in the long run, I want to stay in my current care home. I’m not yet completely sure, but my aim is to focus on getting as close to my ideal as I can get. However, it may take several more years to find me a more suitable care home, if we can find one at all. This means that I’ll need to focus on improving my quality of life with the resources I have available now.

To make this happen, I’m trying to focus on moving from anxiety and obsessiveness into some level of enjoyment, possibly even happiness. I took the first steps by writing down some things I may want to improve on during my day activities time. For example, I’d like to learn to do some more activities other than blogging and reading by myself, so that when staff leave, I am not completely left out. Today, I tried to work on a bracelet on my own and it worked.

This evening, some kind of staff supporter came round my care home to observe the staff as they care for several clients, including me. She recommended that, when staff leave me, they give me a soft toy to indicate I’m not alone. This also might ease my obsessign over the time they’re going to leave.

I also will be looking into starting some “bigger” project, like a course, again. I don’t think I’ll want to do Open University again, but maybe some hobby-related course.

I’m also thinking of acquiring a small fridge and simple microwave for in my room. That way, I will be able to make soap and body care products in my own room rather than in the overstimulating kitchen, so I should hopefully be able to do more by myself. Then, I’ll hopefully be more satisfied in my activities.

To sum it up, I will try to focus my attention away from ruminating about the past or future and onto enjoying the present. This is probably the hardest part. I am reminded of a Center for Consultation and Expertise case video about a young woman with lots of challenging behavior, for which the staff kept countless checklists of her behaviors etc. They were aiming to manage her behavior, but once they moved away from this and onto looking at how she can have a good day, the behavior also decreased. This might be the case for me too.

Birthday #WotW

Hi all on this beautiful Sunday! It’s already 8:30PM as I start typing my post. It’s my 35th birthday today and I spent most of the week stressing about it and the weekend celebrating it. For this reason, I’m choosing “Birthday” as my word of the week, even though the week is practically over already.

Early in the week, I talked over my birthday with my husband. I had already invited my parents to come over to Lobith today. They hadn’t seen the house since we’d bought it, or the inside of it at all for that matter. My parents need to drive over two hours from their home to Lobith and I’d asked them to drop me off at the care facility in Raalte on their way back. For this reason, I pretty much felt obligated to invite them over for dinner in Lobith. However, this also stressed me out, as it would mean I wouldn’t be in Raalte till like 8PM, by which time my one-on-one would’ve left.

My husband told me I could text them with a time proposal for them to arrive, like early afternoon. That way, they still had some hours to be with us and could still be dropping me off in Raalte and arrive home at a reasonable time. My father doesn’t text and my mother doesn’t drive, so I texted my mother to ask her if this was okay with both of them. It was.

Yesterday, my mother-in-law picked me up in Raalte and we drove to my in-laws’ house. It was good to be there. I in fact had only been there once since the pandemic started. Before then, and especially before I went into long-term care, I’d be at my in-laws’ at least once a week on average. I always loved walking their dog, a black lab called Bloke. My mother-in-law and I walked him again yesterday.

For dinner, we indeed had lasagne and indeed without celery. It was great! I also had a Magnum Billionaire ice cream for dessert.

I also got lovely presents. One of my sisters-in-law had been sent shopping for the largest Rituals gift box she could find. I think it’s amazing!

Today, like I said, my parents visited. I don’t have the greatest relationship with my parents. Like usual, my father kept infodumping on his interests, which he was able to relate to our house in Lobith, since he practically renovated my parents’ house on his own. I could hardly get a word in, but my husband seemed interested. I made some smalltalk with my mother.

The presents I got from my parents, were great though. I had asked them for a surprise box from my favorite beading shop, which happens to be local to them. Aside from that package, I also got another box of jewelry-making supplies they’d found at a thrift store, a turtoise soft toy and fresh cherries and strawberries.

When I returned to the care facility at about 6:15PM, I had dinner: noodles another client and staff had cooked this morning. It was good.

Overall, the day was good. So was the rest of the week for the most part. I seem to slowly be crawling out of the dark pit of emotional dysregulation I was in last week. I’m relatively calm considering the fact that my birthday is a trigger for my C-PTSD.

How was your week?

Word of the Week linky