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.

I Give In: Following My Heart to My New Care Home #31Days2022

Hi everyone. The optional prompt for day 2 in the 31-day writing challenge is “give”. Again, this is a bit of a freewrite as I prepare for the move to my new care home on Wednesday.

You see, when I originally moved to my current care home in 2019, it was the first place that wanted me. I also had some rather odd preconceived ideas about the kind of place I needed to be in to get my needs met. I thought that, in order to get a high staff/client ratio, you needed to be in a home for severely or profoundly intellectually disabled people. After all, places I’d known before in the psychiatric system, had a much lower staff/client ratio and so did so-called “supported housing” facilities for those with milder intellectual disabilities. (I did already know that I wanted to be in a place for people with intellectual disability rather than mental illness even though I’m not intellectually disabled, because the intellectual disability services approach is far less training-focused than that on the mentally ill.) At the back of my mind, I did know about a few homes on the care agency’s main institution grounds that catered towards those with mild or moderate intellectual disability with severe challenging behavior, but I couldn’t get the right “care profile” (on which your funding is based) for that. Not at the time, at least.

So I accepted the room at my current care home. It didn’t feel that good right from the start, but what else could I do? I was hardly getting by living with my husband. And, indeed, I don’t know what I’d have done had I had to survive lockdown while living independently. Unsuitable as this home may’ve been, it was a much-needed step on my journey.

Once I lived in my current care home, where all my fellow residents have profound intellectual disability, it became apparent pretty quickly that I needed more intensive behavior-related support than my care profile would allow for. I was first very scared when I heard that my support coordinator was applying for the highest care profile – the one I would’ve needed for the homes still at the back of my mind. After all, at first, my funding had been denied altogether. Not just the highest care profile – any long-term care funding. Were they going to re-assess me all over again? It turned out not: either I’d get the higher care profile or I’d remain in the lower category, but my funding couldn’t be taken away. Within a month, we heard the good news that my funding got upped to the highest care profile. Five months later, my additional one-on-one support got approved.

Still, I didn’t dare give in to my wish to move to one of the “intensive support” homes on main institution grounds. Not consciously, at least. When no-one was looking, I did look all over the care agency’s website to see the descriptions of their homes, all while saying I didn’t want to move.

In fact, at my care plan review last year, I said I was 95% sure I wanted to stay here and those other 5% were because of the distance to my husband. My husband said I needn’t worry, as it’s not like there are dozens of places for me to choose from. Then again, I don’t need dozens to choose from.

The home I’m moving to on Wednesday, is again the first home that wants me. However, it is also the home that stood out to me on those searches on the care agency website. It is most certainly not perfect – I know that before I’ve even moved in. However, I have my hopes up that I won’t regret having given in to following my heart.

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.

TGIF: October

Hi all. It’s the last day of September (duh!) and I haven’t written enough posts this month. That is, if I want to aim for 300 posts in 2022, I’ll need to have written 225 now. I’m not sure that’s entirely true, since both October and December have 31 days and September has only 30, but oh well.

In any case, today’s optional theme for Paula’s TGIF is “October”. Paula asks us what our plans are for the month.

Of course, October’s main theme for me is moving to the main institution care home and settling in there. Today, I packed my first box. I also told all fellow residents I’m close to. The one in my own home at first hardly reacted, but now seems to understand to some degree. The woman in the care home down the road became a little emotional. I gave her a matching necklace and bracelet. The guy in the care home next to mine, the one with the chickens, reacted understandingly when I explained that the people in my new home are of a higher intellectual level. “So more like you and me?” he inquired. Yes, like that. I gave him the polymer clay sun, because he’s usually in a sunny mood. He gave me an egg he’d collected from one of his chickens this morning.

I already have two visits from my family planned in the first week of my stay at the new home. On October 8, my sister and her family will be coming by and my mother-in-law will visit me on October 11.

Besides settling into the new home, October will be a busy blogging month. I am participating in the 31-day writing challenge once again, although I won’t even attempt to do a landing page this time around. I usually just sign up for the prompts and to have some reason to blog everyday, even though I haven’t completed the challenge in years. There is of course also Blogtober, for which there are prompts this year too. I am not sure what I’ll do with those. All this to say, my cares about not having written enough during September, are really not all that important. Besides, no-one is going to come after me if I don’t write 300 posts in 2022.

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?

Joy in September

Hi everyone. How is it the end of September already? I pretty much forgot the month is almost over, but since it is, it’s time for me to write an update on my word of the year: “JOY”. I am linking up with Lisa’s One Word linky. I am also joining the Word of the Year linky.

September started out with good news, as, on the very first day of the month, I heard that I was first on the waiting list for what I now refer to as the prospective new care home. This gave me some renewed energy, but also stress. I was warned that the wait might still be six months or so. “That’s super quick,” my husband said. Well, those who’ve read my blog over the past couple of weeks, know that it’s gone even quicker: tomorrow, I am to decide whether I want to move to the home and, if I want to (which I do), I’ll move next Wednesday, October 5.

Considering this, the whole month of September flew by in a bit of a haze, in which I was both hyper with excitement and overwhelmed with worry. I am still both as I type this post, in fact. Consequently, I hardly found any clear moments of joy that were just that. After all, things I did feel delight or joy over, were also laden with some level of anxiety or anticipation. For example, at my husband’s and my visit to Ikea, I was thinking about what to buy for the new home.

The month of September, of course, was also the month my iPhone and Apple Watch got their updates and I got really used to my Apple Watch. For the first few weeks of the month, I was compulsively moving to get far beyond my activity goals. This past Friday, my dietitian did caution me against it. The next day, with some emotional struggle, I let a day go by when I didn’t fill all my rings. That seems to have broken the cycle, as I’m now able to be a bit easier on myself. For example, yesterday I was sick to my stomach all day, so really didn’t feel like exercising. I am relieved I am able to permit myself these days now too.

For the month of October, I am of course looking forward to enjoying real food, as the staff at the new home cook homemade meals everyday there. I am also hoping to enjoy visits from family, as I have a few planned already for the first week at my new home. Other than that, I am expecting to have a lot of getting used to at the new home, so I’m just hoping to enjoy some everyday pleasures.

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?

The Wednesday HodgePodge (September 21, 2022)

Hi everyone. I haven’t blogged in several days. A lot is still on my mind, but I’m too all over the place to write it all down in a coherent way. Don’t worry, I’ll get to it, eventually. For right now, I’m joining in with the Wednesday HodgePodge. Here goes.

1. Volume 478. Sounds like a lot. Where were you in 1978? If you weren’t born where were you in 2008?
In 1978, my parents got married. I wasn’t born yet. As for 2008, I spent the entire year on the locked acute psychiatric unit. I got there in November of 2007 and left for the resocialization unit in March of 2009. This year was also the year I started officially dating Jeroen, whom I married in 2011.

2. Raise your hand if you remember records playing at a speed of 78 rpm? What’s a topic that when it comes up you “sound like a broken record”?
No, I don’t think I remember that. As for the second part of the question, anything that causes me stress or worry can get me talking like a broken record.

3. What’s the last thing you recorded in some way?
I rarely if ever make audio recordings. In fact, I did one once in my private diary app Day One just to see if it’d work. Can’t remember when though. Joyce supposes many will reply with something they’ve added to their DVR, but I have no idea what that even is. So yeah, like her, I’m going with something I wrote down and it’s my worries about the prospective new care home. I E-mailed them to my assigned home staff Monday night.

4. Thursday is the first day of fall (in the northern hemisphere). How do you feel about the changing seasons? Something you’re looking forward to this fall?
Fall is my least favorite season, so I don’t really like this change of the seasons. However, I do look forward to hopefully being able to capture some photos of the amazing fall colors. I’ve heard the main institution that I may move to in two weeks is surrounded by beautiful nature.

5. In what way (or ways) are you like the apple that didn’t “fall far from the tree”?
My mother half-jokingly says that I got all my negative traits from her and all my positive traits from my father. Indeed, I do share my mother’s short temper, but I also share her creative talent. In many other ways, we differ. For one thing, she hates to depend on others (except for my father). For this reason, she can’t stand those in the helping professions, including doctors. This is somewhat worrisome now that she’s in her late sixties and her health is declining. However, she considers me an attention-seeker for accepting care.

6. Insert your own random thought here.
I’m so nervous! In less than an hour, I will be headed to the main institution to have my first orientation visit with the prospective new care home. I am really hoping it is as good as people say it is. Please all pray this works out for me.