#WeekendCoffeeShare (November 12, 2022)

Hi everyone. It’s once again been a while since I last wrote. Today, I’d like to write a post for #WeekendCoffeeShare. I drink more coffee here at the new care home than I used to and it’s not decaf in the evenings. That’s one thing I don’t mind, although I now realize the caffeine might be contributing to my poor sleep. Like I said a few times before, I’m struggling greatly otherwise too. Let me try to share a bit about this past week. Grab a cup of coffee, cappuccino (we have a milk frother here) or tea if you’d like one and let’s chat.

If we were having coffee, firstly I’d start out with the slightly positive: the weather. Although others – climate activists – would see this as a negative (and I understand why), I am so relieved we have relatively mild fall weather here. Daytime temperatures rose to a maximum of between 12 and 17°C over the past week and we didn’t get much rain.

If we were having coffee, then I’d share about the negatives, the list of which starts with my day schedule. I requested one because, otherwise, staff would give me one-on-one support whenever they so wished. However, as it turned out, the day schedule was so vague that staff could still interpret it however they wanted to.

For instance, some staff had gotten it in their heads that, between each activity, regardless of how long that activity took, they’d need to leave me alone for 30 minutes. I said sarcastically that I’d have to think of activities that lasted two hours then, but the last staff who openly told me this about the 30 minutes between each activity didn’t get my point and said an activity could take 30 minutes or whatever too. For clarity’s sake, I have unlearned to initiate activities that take longer than 30 minutes myself because I know staff will usually tell me they don’t have the time, even though I got 90 minutes of uninterrupted one-on-one from my old home’s staff each weekday morning and two hours each weekday afternoon.

Like you may guess, my day schedule is organized around activities, not timeframes. I understand this if you want to put into it specific activities such as “walking” and can’t be sure how long each walk will take. That’s why my old home had “supported activity” in my day schedule. However, it appears as though my staff here want to be able to decide on a daily basis how much one-on-one support to offer me and usually this is not dependent on my need for it, or even on my fellow residents’ daily care needs. Not that those should matter, since my one-on-one is *my* one-on-one, not my fellow residents’. However, it’s about 90% dependent on staff qualities: whether they smoke, whether they’d rather do stuff on their phone or chill out with coworkers than help clients, whether they can or want to set boundaries on my fellow residents’ demands, etc.

As a result of all this, I tore up my day schedule on Monday and life hasn’t been worse since.

If we were having coffee, lastly I’d share it’s my husband’s birthday today. He doesn’t celebrate it or so he told me, but he will be coming here for a visit tomorrow.

How have you been?

Gratitude List (October 7, 2022) #Blogtober22

Hi everyone. It’s Friday, which usually means the Ten Things of Thankful linky is live. It isn’t yet as of the time of this writing, but if it will be live tomorrow, I’ll link this post up regardless. After all, I really want to do a gratitude post. It so happens that today’s prompt in #Blogtober22 is gratitude. Let me share.

1. I am grateful I was able to see most of my staff from my old care home and give them something from my shelf of handmade items before I moved here on Wednesday. I left the things that hadn’t been picked yet to be distributed among staff I didn’t get an opportunity to see.

2. I am grateful for delicious French fries on Sunday. Okay, it was my idea and I paid for them, but I am grateful the staff were willing to drive to my favorite snack corner in Raalte to get them.

3. I am grateful that the one client at my old care home who can talk a little, came by my room once it downed upon him that I was leaving. He gave me a candy bar and started to cry a little. I am grateful I was able to comfort him.

4. I am grateful for all the nice goodbye presents I got from the home and day center. I still don’t have pictures, but will show you once I do. Among other things, I got a giraffe soft toy and a framed collage containing photos of me.

5. I am grateful that, on Wednesday, the staff who were going to help me move were in the home early. After all, I woke up at around 7AM and am so glad I could get help then.

6. I am grateful my new staff don’t leave me alone for prolonged periods of time. In my old care home, it had been determined that I could be left alone for up to 45 minutes at a time, and this sometimes got prolonged to several hours if staff just popped their heads around the door when the 45-minute timeframe was up. I indicated pretty early on that, now that I don’t know my way around the home, I think 45 minutes is too long. Thankfully, the staff are able to accommodate me.

7. I am grateful for nice chatter with my fellow residents at the new home. I am also grateful for several clients from other homes who greeted me and started talking to me on my walks.

8. I am grateful my call button works after all. It didn’t work the first day in my new home, but yesterday, it got fixed.

9. I am grateful for home-cooked meals. Even for me, a rather picky eater, I think the staff are able to cook quite good meals, better at least than the meal delivery service ones. On Wednesday, I even at one point wanted to try some mash, which I normally can’t stand. I eventually decided against it though.

10. I am grateful a fellow client at my new home, who is into St. Nicholas, gave me a candy mouse this afternoon. This is a typical St. Nicholas treat. It was such a sweet gesture.

What are you grateful for?

Saying Goodbye to Mental Health Services

Hi everyone. October 10 is World Mental Health Day. In honor of this, many bloggers are writing about mental health this week. As a person with serious mental health challenges, I think I need to offer up my contribution too. However, mine will be a bit different, in that just last Tuesday I had my for now final appointment with a professional from a mental health service.

I did not usually share details of my less than stellar experiences with my psychiatric nurse practitioner on the blog, but let me say that my appointments, except for those concerning medication, over the past three years, have for the most part been useless. Maybe my expectations of an assertive community treatment team were too high. For those who don’t know, an assertive community treatment team is an outreach-based team that treats the most severely mentally ill, usually care-avoidant patients. As a result, a lot of the care they do is more like support and steering towards services than actual therapy. They do have a psychologist on the team, but the majority of clinicians are actually community psychiatric nurses.

Back when I got kicked out of the psych hospital in 2017, I did need such a team, as I needed lots of support in my daily life. However, once I’d moved into long-term care, maybe an assertive community treatment team wasn’t the most logical choice of treatment teams. And yet that’s where I ended up.

Not to say it’s all my or my referring agency’s fault. My nurse practitioner did flat out refuse to refer me anywhere else even when he should have realized he couldn’t provide the kind of treatment I needed. He also claimed we were doing “trauma treatment” by merely talking over my mental health struggles, which happen to be trauma-related, occasionally. In my opinion, it was neither specifically trauma-focused nor treatment.

Now I know that my staff and the behavior specialist at the care home are probably as capable as my mental health professionals were at helping me deal with my everyday instability. Neither can provide trauma-focused therapy, while both can provide a listening ear (my staff at my old care home at least often better than my nurse practitioner, in fact).

I did, of course, start my topiramate and pregabalin while in treatment with my now former mental health team. This I do credit the team’s psychiatrist hugely for. I don’t honestly think an intellectual disability physician would’ve been able to come up with this idea and I’m not sure a consulting psychiatrist would’ve gotten the idea either. Then again, now that I’m on a stable dose of both meds and only wanting to slowly decrease my aripiprazole, my agency’s intellectual disability physician can manage that.

All this combined got me to conclude that I don’t think I want mental health services anymore. If I or any of my current professionals ever change our minds, I can always get referred back to a mental health agency.

Moving Into the New Care Home

Hi all. I’m departing from the #31Days2022 prompts today, because the prompt for today, “other”, didn’t spark any creative muse in me yet. Instead, for today’s post, I am writing about my move into the new care home. It’s been quite the overloading day, to be honest.

I had set the alarm for 7:30AM, because the moving crew would be in Raalte at eight to collect my desk and chair. The rest of my belongings had been moved to the new home yesterday. Not surprisingly, I woke up before the alarm went off. Thankfully, there already was a staff available for me. When the moving crew had removed my furniture, I had breakfast at another table.

Thankfully, there still was time for a walk before it was time for me to collect the stuff that could go into the staff’s car and to drive off to the new home. This stuff included the soft toy I’d slept with, my clothes from the night before as well as the goodbye presents I’d gotten from the home and day center. One of the day center staff specifically came by to say goodbye to me on her day off.

As we got here to the new home, we were greeted by a man whom I’ve come to assume will be my assigned staff but of which I’m not sure. We were allowed to unpack, which took several hours. I had lunch after everyone else had already had theirs.

My staff from my old care home in Raalte left at around 2PM. From then on, several staff have come and gone into and out of my apartment. I did go for a walk around grounds at around 3:30PM. Several clients from other homes greeted me and my staff and started talking to us. I liked it, but it was a bit overwhelming at the same time.

At around 5PM, I got very irritable. The reason was the fact that my call button doesn’t work as of yet. It looks like it may’ve been set to be received at the night staff’s office in the main building, where during the day there’s no-one. I hope that’s true, as otherwise I won’t be able to reach anyone during the night.

I also found out there’s no handle to lock my room’s door from the inside without a key. I immediately drew the conclusion this means I can be locked into my room. Of course, the staff said they wouldn’t, but the mere fact that they can, causes me intense fear.

I am trying to stay as calm as possible as I write on my blog now that I’m alone. Thankfully, I can tell time – the staff verified this, which may seem stupid to those reading my blog but was actually validating to me. Now that they know I can tell time, they can tell me when they will be back. This does help me.

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.

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.

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 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