What If I Lose My Care?

Today’s prompt for the Weekly Prompts Wednesday Challenge is fear. More specifically, the organizers ask us to consider whether we ever worry about the “what if’s” of a situation without looking at the positive present. Fear, for me, takes many forms, including post-traumatic stress, in which I relive the past. However, it also includes worrying about the future indeed.

Specifically, I worry about losing my support. Of course, this is a realistic worry in a sense, in that my one-on-one support has only been approved until sometime in late 2023. However, right now it’s only May 2022 and a lot could happen between now and then.

This worry also takes unrealistic forms. For example, sometimes I’m convinced that the psychologist from the psychiatric hospital who diagnosed me with dependent personality disorder to “prove” that I was misusing care, will find out that I’m in long-term care and will report me for care fraud. If she does and if the authorities follow along with her allegation, I will not just lose my one-on-one, but all my long-term care and will essentially be required to move back into independent living with my husband.

In a sense, the fact that this “what if” is my worst fear, does prove sort of that I do have dependent traits. However, dependent personality disorder or dependency in general is not the same as misusing care. After all, I never disputed my psychologist’s claim that I wished to be cared for. What I disputed, is her claim that this wish is unfounded, in that I don’t really need this care.

In a similar fashion, recently I’ve had “what if’s” in my head about moving to another care home. What if the staff there expect me to be much more independent than I am right now? In a sense, one reason I want to move to another care home is to have a better quality of life, a broader perspective. This may include greater independence. But I don’t want to be forced into it.

I am reminded of a question on a personality test I had to fill out for my autism re-assessment back in 2017. The agree/disagree statement went something like this: “Being left behind alone is my worst fear.” I didn’t know how to answer it back then, as I thought at the time that being in serious pain would be worse, so I ticked the “Disagree” box. Then again, at the time, I hadn’t experienced significant time being left to my own resources in at least nine years. Now, I would certainly tick the “Agree” box even though I know it was a red flag for dependent personality disorder. I don’t care.

What if I lose all my care and am left to my own resources? During the same assessment, I had to answer a question about how difficult it would be to stay on my own for a couple of days. I ticked the “Very difficult” box, not the “Impossible” box that I would have ticked now. Then again, if my husband had stocked up on food and I had my computer and phone with me, would it literally be impossible? Hmmm, well… emotionally, yes, it would be.

Reasons I Think I Want to Stay in My Current Care Home

Last week, I was discussing my insecurity about living in my current care home with my assigned home staff. I still keep searching for another place to live, even though staff keep reassuring me that I don’t have to leave. Part of the reason for this is probably habit, in that I feel I ought to be looking for another place because that’s always been the case. However, my assigned staff also challenged me to write down a list of reasons I want to stay in my current care home and a list of reasons I may want to leave. Today, I’m going to share my list of reasons I think I want to stay. I’m pretty sure I won’t be sharing my list of reasons I may want to leave, as these are more like things I am hoping to find a solution to within my current care situation. Anyway, here are the reasons I probably want to stay in my current care home.

1. My one-on-one support. Of course, this is government-funded and may be transferable to another care facility, but I do like the fact that my current care team really think my care is important, in that staff shortages won’t easily mean my care will be cut.

2. The fact that I have gotten to know most of my staff. Of course, no-one can guarantee they’ll remain part of my team for the foreseeable future, but if I leave, the whole team will be new at least at first.

3. The fact that my staff help me with activities of daily living. This is a bit of an uncertain thing, as I sort of feel I ought to be able to do more of them independently.

4. The fact that I get day activities in the home and am the only one who does for now. Even though it may be possible to get day activities in my room at another care facility, I might not be the only one. I like the peace and quiet during the day as it is now.

5. The fact that fellow clients hardly make an appeal on me. Most leave me alone most of the time. This is a good thing, but I did put in my other list that I wish to interact with other clients somewhat more than I currently do.

6. My own room with my private bathroom, kitchenette and balcony. Thankfully, shared rooms are no longer in existence within disability services as far as I’m aware, but shared bathrooms definitely are.

7. The weighted blanket the care facility paid for me to sleep under. I mean, seriously, if I were to transfer to a different care agency, I’d lose that too.

8. The Internet access. Pretty much unrestricted, mind you. At least, I haven’t run into any sites that are blocked by the care facility’s WiFi. At least social media and games are allowed. I’m not particularly interested in anything adult content, so haven’t checked that. I can also use the Internet whenever I please, including at 3AM should I so desire (which I occasionally do). I am pretty sure some other care homes would be more restrictive about this.

Overall, looking over this list, I think that, while things aren’t perfect, my care home is pretty good. Actually, I am quite sure it’s pretty much the best I can get.

loopyloulaura

A Letter to Myself Five Years Ago

Today, I stumbled upon a journaling prompt that asked me to write a letter to myself five years ago. I’m pretty sure I’ve done something similar to this at least a couple of times before. In fact, when I searched this blog for letters, I saw that I’d written A letter explaining my life at the time in early 2020, a letter to my younger self in general in October of 2018 and even a letter from my (then) future self in 2019.

Those who know the timeline of my life, of course, will not be surprised that I am going to pick this prompt anyway, as the “five years ago” part of the prompt is particularly significant. After all, it was weeks before I’d be kicked out of the mental hospital. I am not going to bore you with a timeline of the past five years in this letter. Instead, I’m trying to provide some new insights.

Raalte, March 27, 2022

Dear Astrid,

It is tempting to start this letter with a cliché, such as, “How are you?” However, I know how you are. You are struggling greatly with self-doubt and uncertainty. Fear of abandonment and attachment loss. You’d rather avoid taking the next step in your life, leaving the familiar behind to step into unfamiliar territory. Even though you’d rather not admit it, your psychologist is right that you’re scared of needing to become independent.

I want to let you know I understand. Independence is scary. The unfamiliar, leaving the psychiatric institution to go live with your husband, is even scarier. I understand you’d rather stay with unsupportive people you know, ie. in the psych hospital, than live with a supportive person, ie. your husband, under circumstances you don’t know.

And, to be honest, if I had a choice back when I was you, I’d not have chosen to live with my husband. The thing is, you don’t have a choice. Not yet. But you will, at some point.

Please, for my sake, hold on for a bit. Do what your psychologist tells you, but also stand up for your right to proper day activities and community support. It will be hard, living in the community with your husband. But things will get easier.

I am writing from a care facility. In 2019, I was approved for long-term care based on blindness. I also have extra one-on-one support. Please don’t tell your psychologist all of this, as she’s going to time travel right ahead to me and make sure my funding gets taken away. This is just between you and me, so that you know things will improve. I know they will get worse first, but please do hold on.

Looking to you, I do see that you struggle to let go of the familiar, even when it isn’t good for you. I sometimes think I face the opposite issue, chasing perfection rather than being content with what I have now. It’s a true balancing act.

I also want to let you know that, as much as you’d like to make your own choices, being allowed to make those choices also can be a burden. The fact that, now, I am free to stay in the care facility for as long as I want or leave when I want, is quite scary, I must admit. In that sense, your psychologist was probably right about my dependent personality disorder features.

I wish I could tell you that your attachment issues would be over by now. They aren’t. I’m still struggling with them, worse even than I was when I was you. However, I do have a supportive mental health treatment team now,for which I’m forever grateful.

In summary, please do believe in yourself. You have every right to feel that you need more support than your psychologist says you need. You just won’t get it yet. Eventually though, you will.

With love,

Your future self

#WeekendCoffeeShare (March 5, 2022)

Hi everyone on this beautiful Saturday afternoon. I’m joining #WeekendCoffeeShare again today. Sorry I missed out on it last week. I just finished my afternoon coffee and I’m pretty sure there’s still some left, so let’s have a cup of coffee (or tea) and let’s catch up.

If we were having coffee, firstly I’d share with the #WeekendCoffeeShare community that I caught COVID after all. Thankfully, I’m out of quarantine as of last Tuesday. I’m still horribly exhausted and easily out of breath. Things are slowly improving though. I mean, today I had an easier time of it walking around the day center than I did on Thursday.

If we were having coffee, I’d tell you that the weather here is truly beautiful. It’s cold. Okay, when will I stop saying that? Probably when it’s 25°C. Seriously though, in the morning, the temperature can easily get below zero. All that being said, it’s sunny and it doesn’t even feel as cold as it used to in the middle of winter when it was as cold as it is now.

If we were having coffee, I’d say that I’m looking forward to sitting on my balcony again. Unfortunately, the door won’t open. We discovered this yesterday when some men came to repair the blinds and they wanted to go see them from outside. The door to my balcony is locked, but the staff do have a key. It wouldn’t give way though. I’m hoping it can be repaired soon, because, while it is too cold to sit on my balcony right now, it won’t be for long.

If we were having coffee, I’d share that quarantine meant I haven’t been as crafty as I would’ve wanted to be, but I made up for it over this week. I haven’t finished most of the things I’ve created. However, I did finish one piece of polymer clay work and VoiceOver guessed correctly what it’s supposed to be: a sea shell.

Polymer Clay Shell

I used dolphin gray Fimo for the shell itself and colored it using chalk pastels in dark brown (if I remember correctly) for the hole and an orangey brown for the shell itself. I am so disappointed that my chalk pastel set doesn’t come with a list of what the colors are supposed to be called. I mean, I saw one on the site I purchased it from, but then I can’t pair the names with the actual colors.

If we were having coffee, lastly I’d tell you that I’ll be getting a new one-on-one support staff soon. He’s been orienting a few times already. Because he’s a man, I felt kind of distrustful of him at first. That’s in part my prejudice talking. I’m hopeful it’s going to work out though.

How have you been?

Gratitude List (January 22, 2022) #TToT

Hi everyone. It’s time for another gratitude post. I’m struggling a little, but, as I’ve said many times before, this makes them all the more important. As usual, I’m joining in wiht Ten Things of Thankful (#TToT). Here goes.

1. I am grateful to have seen my husband on Sunday. We went to the Subway drive-through to get a sandwich. I chose a turkey one, to which my husband asked whether I took it because of my diet or because I was in the mood for turkey. “Both,” I replied.

2. I am grateful my mother-in-law visited me on Wednesday. We went for a drive around the nearby countryside and for a short walk in a nearby village.

3. I am grateful for muesli for breakfast. I am also grateful the dietitian allows me muesli with some nuts or raisins in it and it doesn’t have to be plain grain.

4. I am grateful for blueberries. When in the nearby village with my mother-in-law, we decided to get some groceries for her. I decided to get blueberries too.

5. I am grateful my dental chek-up last Wednesday was uneventful and, other than the fact that I have inflamed gums, everything was fine.

6. I am grateful for a good laugh with one of my staff on Thursday. I originally was anxious about her being my one-on-one that day, because a few weeks prior she’d triggered me with what she thought was encouragement of my independence. I thankfully talked it over with her and we then laughed our butts off at some silly jokes we were cracking.

7. I am grateful I am inspired to write on my blog. I still struggle to find the motivation to go on walks or to craft, but at least I’m writing almost everyday, sometimes twice a day.

8. I am grateful my nurse practitioner keeps trying to help me and takes me seriously despite how complicated I might be. I have been experiencing increased flashbacks to the time I spent in the psych hospital lately, but I try to remind myself my staff and my treatment team at mental health are different.

9. I am grateful it looks like the essential oils I ordered on Thursday, are on their way. I ordered with a company that doesn’t use the bank’s payment processing system, so I had to make my payment manually, then panicked worrying that I’d made a typeo somehow. Apparently not. Let’s hope the company isn’t altogether lying and will actually have shipped my essential oils.

10. I am grateful I’ve found the courage to experiment with essential oil blends that are slightly different from the ones I find online. For example, earlier I used tangerine rather than orange in a blend that otherwise contained cardamom and cinnamon. It smelled delicious!

What are you grateful for?

2021: The Year in Review

Each year at the end of the year, I look back at the past year and do a review. Today, I’m doing one for 2021.

At the beginning of the year, we were all cautiously optimistic about the vaccine being the ticket out of the coronavirus pandemic. It wasn’t. I got my first shot in early February and my second shot a month later. In early December, I had my (first) booster shot. I’m pretty sure more are still to come.

At the end of 2020, I first had my one-on-one support approved. It took some time to figure out how the staff should best fill in the allocated hours. Initially, the manager wanted my husband to be clear on when he was going to have me home with him, so that my one-on-one hours could be canceled then. This wasn’t doable for my husband or me, so finally it was agreed that my hours would be filled in regardless.

For most of 2021, we had day activities at the home due to the pandemic. Thankfully, by September, the day center opened and the clients were mostly back to their pre-pandemic groups. I, however, was not. Thanks to my one-on-one, I was provided day activities in the home and this continues to be the case so far. There has been talk of me starting in a small group, but this isn’t doable for me right now or within the foreseeable future.

For the first half of the year, I struggled a lot with the battle inside my head between wanting to live more independently and wanting even more support. This led to a climax in mid-June, when the manager told me that more support is really not possible. I was in a crisis for about two weeks. Then I started my new medication, topiramate, which calmed some of the inner conflict. It, of course, helped that I was reassured that, regardless of my attempts to push staff away, I was going to keep my allocated one-on-one support hours at least until the end of December. And of course now they have been approved until December 2023.

Over the summer, when my topiramate started to kick in, I was able to be more creative than I’d been in a long while. I started polymer clay once again and have been able to enjoy this hobby ever since. Like I mentioned when I wrote down my hopes for 2021, I didn’t intend on doing it all independently and that’s still not one of my hopes.

Looking back at my hopes, I did pretty well on them for this year. See, I think it helps that I don’t call them resolutions or goals, ha.

Overall, this year was a pretty good one for me personally. Even in terms of COVID, it’s been as good as possible, in that I haven’t contracted the virus and neither has anyone else in my home. One of my staff tested positive recently and originally we were supposed to all get tested today. After conferring with the care agency’s pandemic team, this got canceled though. I may still get a lateral flow test later today just to be sure. Let’s hope I won’t end the year with COVID.

How has your 2021 been?

Share Your World (December 27, 2021)

Oh my, can you believe we’ve officially started the last week of 2021? Not even the last full week? I seriously can’t believe how quickly time flies at the end of the year.

Today, I’m joining Share Your World or #SYW. I just discovered that Melanie ditched her domain, which was the reason I hadn’t seen her posts in over a month. Shame on me for not having found out before! This means I’m probably having to redo all my other links to her posts. However, now’s not the time to do this. Anyway, let’s get started. I don’t do #SYW that often, so for those who don’t know, it’s a meme where you get to ask four or five of Melanie’s weekly questions, plus share your gratitude. Here goes.

At 12 a.m. on December 31st/Jan 1st, what will you be doing? (use your own time zone please)
Probably sleep. I will be at the care facility for New Year’s and all celebrations here take place during the day or evening, including the (light) fireworks. There will not be any extra staff till 12AM. Of course, we do have two waking night staff, but it’s not like they’re going to party with me.

Is there a tradition you have for New Year’s Eve?
Usually we’ll eat “oliebollen”, which I was told last year are much like donuts but then the opposites, ie. the holes.

Do you have any hope or reason you find that next year will be better?
Yes. Like I said a couple of times before already, my one-on-one support got approved for the coming two years, so I won’t have to worry about losing my support for the entirety of 2022.

What’s the biggest personal lesson you learned during 2021?
To trust that, with God’s help, things will be okay in the end, I guess. I know COVID and many other of the world’s problems are likely here to stay for a while. I don’t want to dismiss other people’s problems by saying that for me, 2021 was a much better year than 2020. I however do trust that, ultimately, God will work things out for the better.

GRATITUDE SECTION

Describe in 1-3 words how you feel going into 2022
Hopeful, joyous, grateful.

Dear 2021…

Twenty-twenty won
That’s how you begun
For good or for bad
All that we had
Back then, you would continue
And you did

For most, it was probably a sad thing. COVID wasn’t over with. In fact, it’s likely here to stay.

For me, it was a good thing though. At the end of 2020, I was approved for the right level of one-on-one support for a year. I just found out last week that it got approved for another two years to come. I am so relieved! For me, I am more than happy that twenty-twenty won. At least in this respect.


This piece was written for Friday Writings, for which the optional prompt this week is “Dear 2021…”.

Gratitude List (December 10, 2021) #TToT

Hi all on this cold but lovely Friday. Today, I’m doing a gratitude post, just because I can. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful my mammogram came back all clear. I still suffer with slight discomfort, but I feel comforted knowing it’s nothing serious.

2. I am grateful I got my COVID booster shot yesterday and I didn’t even suffer a sore arm. Well, not that arm, at least. All my limbs were stiff this morning, except for the arm I’d been jabbed in.

3. I am grateful my one-on-one support got approved again. Not only that, but it got approved for two years this time! I am so intensely happy, but still can hardly believe it.

4. I am grateful for crafty inspiration. I am currently working on a mixed media Christmas project which includes polymer clay.

5. I am grateful my husband was able to sort out my health insurance for next year. Here in the Netherlands, basic insurance is mandatory but you get to pick your own private insurance company. The government decides what is covered under basic insurance but insurers get to fill in the fine print and decide which care providers (eg. doctors, hospitals, etc.) to contract with. In addition, they get to offer additional coverage packages. For several reasons, my current health insurance was no longer fitting for me, so I decided to change insurers, but needed my husband to help me make the actual switch. I am so glad it seems to be sorted now.

6. I am grateful we still have pepernoten. That’s a typical St. Nicholas (December 5th) treat and I love it!

7. I am grateful that I was able to have quite varied lunches over the week and most were relatively healthy too. I had Turkish pizza on Wednesday, which was my unhealthy lunch of the week. Yesterday, I had a boiled egg on bread and today, I had a toasted cheese sandwich. On Monday and Tuesday, I think I had my usual lunch of a peanut butter sandwich, which I don’t really like.

8. I am grateful I was able to clean my essential oil diffuser (the new one) yesterday and that it was hardly dirty at all.

9. I am grateful for my Christmas tree and its lights. Its lights were almost out this afternoon, so initially I thought its batteries were empty. That would’ve been highly annoying, since I had only put the batteries in last week. Thankfully, switching the position of the batteries did the trick of turning the lights on again.

10. I am grateful I have been sleeping really well over the past several nights. Last week, I had a few rough nights, but this week is much better.

It was harder than I expected to actually make it to ten things of thankful. I mean, I am overjoyed at my one-on-one having been approved, but that makes for only one item on the list. However, I am trying my best to remind myself that even the little things in life that I am grateful for, can and should make it onto this list.

#WeekendCoffeeShare (November 6, 2021)

Hi everyone on this gloomy fall day. I’m joining #WeekendCoffeeShare. Unlike most days when I write my coffee share post, I haven’t had my last cup of coffee yet. Let’s have a drink and let’s catch up.

If we were having coffee, I’d say that my GP appointment on Monday went okay. My magnesium got decreased in hopes of relieving me a little from my abdominal discomfort. It’s helping a tiny bit, but not enough for my liking.

If we were having coffee, I would tell you that I had an okay week otherwise. I’m struggling quite a bit with the disconnect between my intellect and my emotions. This is causing me to appear well-collected a lot of the time when in reality I feel extremely distressed. I discussed a few examples of this with my assigned staff and support coordinator today and they’re helping me improve these situations.

If we were having coffee, I would share that I finally gave in (or up) with respect to the adaptive footwear situation and had my husband order new walking shoes for me. After all, the old ones will probably have a large enough to get my socks wet hole in them within a week or two at most. I am so grateful my husband found almost the exact same shoes. They arrived in the post today. I am still hoping I will eventually get used to my orthopedic footwear, but it will need some further adjustments for that to happen first.

If we were having coffee, I would share that I am looking forward but also stressing about the national cerebral palsy day in three weeks’ time. I went to the event on my own three years ago, but this is quite hard this time. I can’t afford for a staff member to go with me to the entire event even with my one-on-one being covered by the care facility. After all, I have one-on-one only part of the day and would need to pay like €45 an hour for individual support for the rest of the day. I might go on my own after all, or I might skip the event, like I skipped the online regional meeting today. I was seriously planning on going to that one, but just couldn’t get myself to do it after all.

If we were having coffee, lastly I’d proudly announce that I’m going to be an aunt again in May. I’m pretty sure my sister is fine with me sharing this on my blog now that she’s past three months and all tests so far are fine. My sister’s other child, my niece, is also doing well. I shared a few months back that she was diagnosed with hip dysplasia. She had surgery in September and is currently wearing some type of cast. We are all hopeful that once this will be removed in a month or so and once she’s relearned to walk after that, she’ll be completely fine.

How have you been?