I Would Never (Or So I Thought): My Changing Perspective on My Care Needs #31Days2022

Hi everyone. Today’s optional prompt for #31Days2022 is “never”. I am immediately reminded of my shifting perspectives on my care needs over the 17+ years that I’ve been in the care system. Some things I thought I’d never accept, let alone want, in my care, are now things I wish for.

Most notably, in 2008, when I’d been in the psych hospital for about three months, I was being discussed among some autism know-it-alls. When asked what I wanted them to know before the meeting – since I wasn’t present at the meeting itself -, I wrote down that I wanted to be back in the community as much as possible as quickly as possible.

Out of the meeting came the recommendation that I be transferred to an autism treatment facility on psych institution grounds. I eventually ended up going to the orientation visit for the facility and the treatment coordinator and I mutually agreed it wouldn’t be the best place for me, precisely because of what it was: a treatment facility. I didn’t need further training in independence skills, after all, because, due to the combination of my disabilities, this wouldn’t be successful.

At first, I however misunderstood the meeting’s recommendations and thought they wanted me to go into the workhome, which is essentially a long-term living facility for autistics on the same institution grounds. And this is where I started to object in a way I wouldn’t now: I didn’t want to go live on institution grounds long-term.

For the first several years of my experience in the care system, I thought that institutionalization was an excuse for poor care. I am not saying it isn’t, because people who live in the community may need more support than those who live on sheltered institution grounds. In fact, when my current care facility was built in 2015, grouping several community-based care homes together, it was out of a need for budget cuts.

However, that wasn’t the reason I didn’t want to live on institution grounds. Indeed, the reason was the fact that I perceived myself as far more independent than I currently perceive myself. Not just that, but I had a misguided view of the amount of care I could receive.

You see, in 2007, I left an independence training home, where, during the week, the staff/client ratio was usually 2:7. Granted, there was no night shift, not even a sleeping one. I could deal with that at the time and, as a result, thought I could live in a community supported housing facility with staffing available even part of the day. Never mind that this usually meant a much lower staff/client ratio, so that within staffing hours, I would need to share my staff with a larger number of fellow residents.

I also rebelled against living on institution grounds because of my wish that more people could be integrated into society with the right support. Then again, I realized within the past several years that just because I and other people would wish for integration within society, doesn’t mean society wants us in it. For example, institution grounds are just much safer to walk on for people who aren’t safe in traffic, and that happens to include me. Just because I wish all drivers would stop their vehicles when they saw me, with or without my white cane, doesn’t mean they do. And it’s not like they can’t tell I’m disabled when I’m not using my white cane.

Also in 2008 or maybe it was 2009, I saw this documentary about a care agency in the southwest of the Netherlands which had completely done away with institution grounds in 1997, even for the most severely disabled clients. The presenter started out by saying that half (I think) of the clients in another province wanted to go back into institutions. The southwestern agency’s director started talking highly of his agency’s approach, where for instance they call their support workers “personal assistants” and where he at first claimed all clients are successfully integrated within the community. The presenter started showing examples of clients who were drowning, figuratively speaking, in the community. The bottom line of the documentary was that the director made up his mind and invited the presenter to come back a year later to hear his revised approach. I am pretty sure I wouldn’t believe the presenter, saying the clients had obviously not received the right amount of support. But if you need a “personal assistant” by your side all the time in the community while you can roam institution grounds freely by yourself, living in the community isn’t necessarily the obvious choice.

Coffee, Beer, Night Staff, Etc.: Questions I Asked My New Care Home #31Days2022

Hi everyone. Today’s optional prompt for #31Days2022 is “coffee”. I was immediately reminded of one of the E-mails I sent to my assigned staff in preparation for my orientation visit at the care home I’ll be moving to on Wednesday.

One of the less important questions I asked was whether they have set coffee times and, if so, whether they brew regular coffee or “decaf shit”. I did point out, with a winking emoji, that it wasn’t like I didn’t want to live there if they served decaf all day, but that this’d mean I’d need to ask my husband to give me my Senseo back (if he even still has it) As it turns out, they serve regular coffee at least in the afternoon.

I asked some other questions too. Most of the first ones I E-mailed, were worded rather formally. Some of the other less important questions were about groceries. I asked whether the home contracts with a local supermarket or with a nationwide healthcare-specific superstore (the latter), whether they did chips and soda or (alcohol-free) beer on weekends and, if so, whether clients had to pay for those treats themselves. It turns out they offer these treats on Saturdays and clients don’t need to pay for that, but each client does have an account with the superstore in order to get extras, which they do need to pay for.

I also asked what my mailing address would be, since the home has a fake within-institution mailing address. Mail should be sent to the institution’s main address, with the fake address as an additional address line (I’m not yet sure how mail delivery people aren’t going to get confused).

More important questions had to do with the availability of staff. As it turned out, the early shift starts at 7AM and the late shift ends at 10PM, except on Saturdays and Sundays and every other Friday, when it’s 7:30AM and 10:30PM. That had me a little concerned at first, because I was worried I might not be able to get the right support at night.

Another important question was about the night shift. I knew that the institution night staff operate from a central office in the main building, but I wondered whether one night staff would be allocated to my home (and a few others) or whoever received my call, would come or send someone. It turned out whoever was in charge of receiving calls at that point, would send someone who was close by.

Thankfully, at my second orientation visit, I found out the door to the home is locked at night, so I cannot leave the home then. This is good in light of the 30 minutes or so between the late shift leaving and the night shift being able to fully step in. I am not in a medically fragile state, so it’s not likely I would die of a seizure or something within those 30 minutes. However, if I could leave the home on my own, it would’ve been quite possible that I’d wander around grounds all night. I am happy I will be as safe as possible in my new home.

Finding My Way #31Days2022

Hi everyone. The first optional prompt for #31Days2022 is “way”. I thought of several titles for this blog post, but ultimately decided on this one. The rest just randomly flowed out of my fingers.

Only four days before I move to the new care home. I told my mother about it on Tuesday. Somewhat surprisingly, she didn’t react weird to the fact that I’m going to live on institution grounds. Not surprisingly, she did start talking to me about how I might be able to walk around grounds independently then.

I did, indeed, mention to the support coordinator and behavior specialist for the new home, when they came to assess my suitability for the home, that I may want to learn to take a little walk myself on institution grounds someday. Afterwards, my current assigned staff cautioned them against too high expectations. After all, I want to be “normal” pretty badly, but I still remain multiply-disabled in some significant ways.

I know that people who are “just” blind can learn to find their way around institution grounds quite easily. But I’m not “just” blind. For one thing, I am not even sure I could use my white cane in a manner that would allow me to detect obstacles safely, given my mild mobility impairment due to cerebral palsy. For another, due to autism-related executive dysfunction and other factors, my energy level varies greatly from one day to the next. So does my capacity to handle sensory stimuli. Consequently, I may be able to find my way for a short walk around grounds pretty easily one day and get hopelessly lost and frustrated the next.

I remember back when I was in the psych hospital, I voiced a similar wish to learn to take a quick walk around the building. An orientation and mobility instructor from the blindness agency came by, taught me a few times with very limited success. Before she was even finished teaching me, the staff decided it was my responsibility, so no matter my mental state, if I left the ward (even in a meltdown), no staff would come after me. I was then supposed to take my little walk, despite the fact that, in a meltdown, I wouldn’t remember where to go at all.

I know at least here in the Netherlands staff can’t legally restrain you once you’ve left an open ward, but that wasn’t the point, since I didn’t need restraining. Their point was that I was now somehow capable enough to find my way by myself and, if I wasn’t, it wasn’t their problem. This at one point led to my husband needing to drive over from the next town to take me back to the ward.

In a sense, I should know the new care home isn’t like the psych hospital, but I keep getting flashbacks. All I can hope for is that my current staff will do a proper handover.

Gratitude List (September 30, 2022) #TToT

Good morning everyone! I was up at 7AM today and am ready to blog. Today, I am writing a gratitude list. As usual, I’m joining in with Ten Things of Thankful (#TToT). Here goes.

1. I am grateful I was able to break the cycle of compulsive exercising before it got too bad. Last Saturday, I didn’t meet my exercise goal on my Apple Watch and, now that I didn’t have a perfect month anyway, I was able to let go of the need to meet all my goals everyday and just do what feels good.

2. I am grateful for my health. I’ve been having a sore throat for a week or so. It isn’t bad, just slightly annoying. In this regard, I am grateful I don’t have COVID. And yes, even though I don’t have any other symptoms, I took a test on Sunday just in case.

3. I am grateful for a comforting talk with the manager for my current care home. She was able to answer some of my more important questions about the new care home.

4. I am grateful my husband was content with the new care home and quite happy to see me move in there. In his own words, it is a “significant improvement” over my current care home.

5. I am grateful for muesli rolls. On Tuesday, we couldn’t find anything to eat for lunch that I like, so my staff offered to drive to the supermarket. I chose muesli rolls, which aren’t what I usually have. I am grateful my staff felt that these were within reason so the care facility would pay for them.

6. I am grateful for blueberries. On the same trip to the supermarket, we bought blueberries too. They were still reasonably priced even though I think blueberry season is over here.

7. I am grateful for the support of my staff as I navigate the stress of transferring to the new care home. I still had some worries on Wednesday and even on Thursday after I’d made my decision, but my staff are able to support me through them. So is the behavior specialist.

8. I am grateful my sister reacted positively to me moving to the main institution. She, in fact, said she will now be able to visit more often, as the main institution is close to Apeldoorn, where her in-laws live. She enthusiastically planned a first visit for October 8, the Saturday after I move in.

9. I am grateful for a somewhat relaxed text convo with my mother. I informed her that I’m moving, to which surprisingly she reacted pretty supportively. She did put in a few comments about the possibility that I could learn to walk around grounds on my own (which I might at some point, but it isn’t a given) and that I could help prepare food, but oh well. Both of these comments wouldn’t have bothered me had they not come from her, actually.

10. I am grateful for some weight loss when I stepped onto the scales today. I lost 0.3kg compared to last week, which is pretty much what I’d expected.

What are you grateful for?

My Bedtime Routine

Hi everyone. I’m feeling a little stressed out and, as it is past 9PM as I’m starting to write this post, I thought I’d share about my bedtime routine in order to get myself comfy and relaxed for bed.

Usually, the staff come by my room at around 9:45PM to help me get ready for bed, like get into my pajamas and brush my teeth. I usually leave my socks on, as I’ll often want to stay up a little longer. The evening shift here at my current care home ends at 10:30PM, so the staff usually say goodbye then too and turn off my light. In the care home I may move to on October 5, the evening shift ends at 10PM, so I may want to move my bedtime back a little.

I can go into bed by myself, but sometimes I want the staff to stand by while I go into bed. I will pull off my socks. Then, I’ll grab my iPhone if it’s sufficiently charged and select a Spotify playlist to play on my music pillow. The music pillow is connected to my iPhone via its lightning port (and a lightning-to-audio converter). I love the Harp Lullabies playlist, the Guitar Lullabies playlist or some albums by Robbins Island Music Group or Dan Gibson’s Solitudes. I most commonly set the sleep timer for an hour.

I sometimes will have an essential oil blend in my diffuser too. Some aren’t very suited to sleeping, but I know of a number of relaxing essential oil blends, four of which I shared before.

I have a weighted blanket, which I pull up over me almost till my chin. I also will grab ahold of one of my soft toys. Sometimes, I’ll lay the tail of the lemur over my chest, while at other times, I’ll hold the dolphin or unicorn.

Sometimes, I need to shift my sleeping position. I can sleep in every position except on my right side, but my preference will vary. Once I’ve found a comfortable position, I’ll likely doze off pretty quickly.

The night staff does come by at around 11:30PM to check on me. This is mostly to prevent me sitting up all night without anyone noticing. I can also press the call button if I can’t sleep, but of course other than try to comfort me, there is little the night staff can do. That being said, I sleep a lot better now that I have the weighted blanket, music pillow and essential oil diffuser than before I had all these.

loopyloulaura

My New Home? #SoCS

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “home”. How timely! As those who’ve read my blog over the past week or so will know, I may move to another care home in a week and a half. The choice is up to me.

It is indeed the first home that wants me, like when I applied for long-term care and landed here. Well, no, in that sense it isn’t the first. My current care home isn’t kicking me out, after all. If I don’t want to move to the prospective new home, if I don’t think it’ll feel like home to me eventually, I don’t need to.

It feels liberating to be able to make this choice. I have been able to ask quite critical questions, some of which were answered already and some of which I’m waiting on being answered soon. For one thing, I want to know about the staff/client ratio. This is important should my one-on-one ever be reduced, but also for those times when I don’t have one-on-one support. The support coordinator told me there are three staff each shift, but I’m not sure that’s just for my group of eight or for the entire home, consisting of two of these groups. I so far only saw my group’s home and that’s quite large already, so if the three staff are for the two groups of eight, that’s going to be quite difficult for me.

Other questions have been of lesser importance, such as whether they serve decaf coffee or the regular kind, whether we need to pay for treats such as chips on weekends, etc. I feel quite satisfied with most answers and am pretty positive I’m going to make the move. With my visit on Monday in addition to last Wednesday’s, I should be able to make an informed decision about whether this will be my new home.

#WeekendCoffeeShare (September 24, 2022)

Hi everyone on this rainy Saturday. How are you doing? Take a seat and have a drink, as I’m joining #WeekendCoffeeShare.

If we were having coffee, I would start out by sharing that last Monday was my and my husband’s eleventh wedding anniversary. We drove to Steenwijk, a town in the far north of my province, where we had lunch and went for a short walk. Then we drove to Blokzijl, a small town not far from there, where we had another walk around town and my husband took a photo of me with a large cannon.

Then we drove to Ikea in Zwolle, where my husband bought a few things, I looked for a new desk chair, and we had dinner. Unfortunately, they only serve the vegetarian version of the Swedish meatballs now, so I had chicken.

If we were having coffee, I would tell you I got a new pasta machine from one of the staff – the staff who always gives us clients everything she finds at thrift stores. This one works electronically or so she told me. I didn’t tell the staff that any pasta machine is hand-operated by default and a motor is optional. This one does have a motor. I did E-mail another staff to ask her to bring her tool kit one more time to remove the fenders for me.

If we were having coffee, I would share that the dietitian showed up unexpectedly for an appointment yesterday. The reason was the fact that I’d lost quite a bit of weight and had been compulsively exercising a lot over the past few weeks. Although the compulsive exercising seems to have reduced this week, I did need a bit of a reverse kick in the behind. You see, I have a history of disordered eating, bordering on bulimia, and although my main means of compensating used to be purging, this could definitely become a thing with over-exercise too. I do need to monitor this closely.

If we were having coffee, I would use the rest of this post to update you about the prospective new care home. I didn’t write a coffee share post last week, so those visiting from there might not know this, but the client in whose place I could come at the home at the main institution, moved out this Thursday. I had my first orientation visit with the prospective new home last Wednesday, am getting another on Monday and, if then I want to move, moving date has been set for October 5.

My first orientation visit went quite well. The clients are quite verbally capable, although of course they do “live in their own world”, as the support coordinator phrased it. The apartment – separate living room, bedroom and private bathroom – is quite large, although I couldn’t fully grasp its size because the client who was moving out had a lot of furniture. My husband did ask whether I would have to clean the apartment myself, but I assume not. I asked though just to be sure.

I love the fact that there are a lot of sports and recreational facilities on grounds, although the staff aren’t yet able to say how we could fit those into my day activities.

A great positive of the possible new home is that they cook their own meals everyday. Yay for no more meal delivery service junk!

My husband is coming to have a look around the home on Monday too, so he may be able to ask his questions too. I am quite excited but still a bit nervous.

How have you been?

Between War and Peace

The stories we hear
Of war and peace
May cause us concern
Or relief
And yet
Reality
Is most often
Something inbetween


When orienting at the prospective new care home last Wednesday, a resident started talking unquietly about the war in Ukraine. She was quickly calmed by a staff, in as simple words as possible, suited to her intellectual capabilities.

That night, I heard an airplane or a helicopter fly by very low over my current home. I thought, perhaps influenced by the woman in the other home, that it was a jet fighter. “Are we going to war now?”, I asked the night staff when she responded to my call button. She put my mind at peace, saying someone had probably booked a night-time helicopter flight over Raalte. I took her story at face value and went to sleep.

The next morning, I found out that both of our stories are probably equally unlikely and reality was something inbetween: the helicopter had been called in a medical emergency to resuscitate a baby. Thankfully, the baby survived.


This post was written for Friday Writings, for which the optional theme this week is war and peace.

What Will I Leave Behind?

If
Or should I say “when”
I move to the new care home,
What will I leave behind?

I’ve been pondering my legacy should I leave for the prospective new care home in less than two weeks. I’ve been thinking of gifting every staff member and a few of the residents who I’m close to and who will remember, something out of my collection of handcrafted sculptures and jewelry. The polymer clay dolphin will go to the one resident in my home I can talk with, because he always carries a stuffed dolphin with him. He may or may not fully understand what it means that I’ll leave (since I’m not sure he’s ever witnessed a fellow client move out), and in any case it’ll likely make him sad. I’ve already decided to appease him with French fries the weekend before the planned moving date. This man has his 50th birthday next year, and I’ve already told several staff I’m going to come back to celebrate it with him.

One of my regular one-on-one staff is getting a matching blue bracelet and necklace that she’s told me countless times would complete a great beach outfit. I had thought of giving it to her for her 50th birthday last March, but decided against that eventually.

Then, besides the physical gifts I’ll leave behind, there’s of course the memories. I wonder sometimes whether some clients will secretly be glad that I’ll have left, as my challenging behavior could come across quite threatening to them. I wonder whether the staff will be happy I’m gone, as then they can house a client with severe/profound intellectual disability here. Then again, we still have another empty room now too.

In all honesty, I have no idea what people will think of me if I do move. Is out of sight, actually out of mind? With my psych hospital staff, it pretty much was, as they didn’t even say goodbye when I was discharged. Then again, this staff, particularly those I’ve known from the beginning, are different. At least I hope so.


This post was written for Reena’s Xploration Challenge. It is a one-word prompt this week: “legacy”.

TGIF: Weather

Hi all. Fridays are usually pretty active in the blogosphere and there are lots of prompts to choose from on this day. Today, I discovered another one, Paula Light’s TGIF. Today, Paula took the opportunity to talk about the weather and for this reason so will I.

Let me start out with the positives: we had some amazingly warm late summer weather early in the week. Not too hot for my liking, although it did get to 30°C on Tuesday, which I understand is too hot for some. Wednesday was the best: some sunshine but some clouds too, no rain and 25°C during the day.

Thankfully, we did get some much-needed rain too. We got a thunderstorm Tuesday night. My Apple Watch registered sound as loud as 82dB during the storm. I wonder how accurate that is, but well.

We also got some rain yesterday as well as today. Today, in fact, it rained most of the day, but I still managed a short walk outside in the morning.

I tried out my orthopedic shoes, which came back from the shoemaker for the umpteenth time. Well, those who’ve read the orthopedic shoe story before can probably guess what’s next. Yes, indeed, I did get another small blister on my right heel after a walk of not even 20 minutes. I’ve told you guys before that the shoes won’t be fixed until 2034 and I’m more and more confident I’m correct after all.

Despite only managing one walk, I did reach my Apple Watch’s Movement goal today. Okay, I did go on the elliptical for just over 15 minutes too. That went surprisingly well, honestly.

Tomorrow, if we aren’t getting lots of rain in the morning, I’ll likely go for a longer walk. A staff who walks quite fast works my one-on-one shift then. Last time we went on a walk together, I broke my speed record: 13 minutes 11 seconds per km. That’s not very fast, but it’s not slow either. Let’s hope for not much rain tomorrow morning.