TGIF: Optimal Care?

Posted on by Astrid

It’s Friday and this means Paula Light is rambling on in her TGIF post. I don’t join in each week, but today, I’d like to.

Today, I received optimal care as per my current care home’s standards. That is, my day schedule wasn’t disrupted and I had one staff member for the entire shift both morning and evening. My assigned staff says this means I’m lucky. I considered myself lucky this morning indeed, since one of the regular staff was my one-on-one staff while two temp workers were supporting the other clients. My staff for the day explained that one of the temp workers knew the other clients pretty well and he’d never worked with me, so it was decided that he’d do his shift supporting them. This, indeed, does make me feel fortunate.

However, with respect to the day schedule, I still feel that it could be better. And I don’t mean with me receiving quantitively more support. I mean that I’d like longer support times and fewer but longer times without support. I also probably want to work towards going to a day center.

I’m probably going to insist I’ll attend the meeting with the behavior specialist, support coordinator, my assigned staff and my mother-in-law next week. In my opinion, given how it’s been going over the past couple of weeks – better than before -, I’m not dead set on leaving this home as of yet. However, I do need to make sure that there’s going to be at least some room for improvement on the part of my care home. Judging from my staff’s comments, I’m pretty sure there isn’t and in fact they want me to adjust to less and less suitable for me care.

Chasing Perfection? #SoCS

Posted on by Astrid

Whenever I think of how bad I feel about my current care home situation, I am reminded of two seemingly contradictory statements from my staff. One is that I think every place is horrible anyway. The other is that I had “gold in my hands” at my old home. These seem contradictory, but really aren’t. They are two sides of the same coin: I am thought of as chasing perfection.

There may be some truth to this idea indeed, but that doesn’t negate the fact that one can learn and this place is definitely bad. It isn’t like I just need to accept what I have now just because I can’t have it all. Besides, if people – the powers-that-be, such as the behavior specialists – just had been honest with me about the fact that, indeed, to live with people of higher IQ would mean more expectations and less support, I’d have declined to move. That was, after all, the comment I put at the bottom of my “housing profile”.

And it isn’t like I chase perfection everywhere. Or honestly that I thought, at the end of the day, that this place would be perfect. Yes, when I read the home’s profile on the website, I thought it’d be, but that leaflet is either outdated or simply incorrect. But when the behavior specialist for my old home explained some things about the home, I did realize it wasn’t perfect. Same when I visited here twice. But then again, perfection doesn’t exist. And I was willing to make some sacrifices to live on institution grounds and have fellow residents I could chat with. But not everything I had: all the daily structure, all the useful day activities, all the proper help with ADLs and, interestingly, behavioral regulation too. Because, despite the fact that this home is an intensive support home, which means the residents have significant challenging behavior, whereas my old home was a care-based home, I see more people managing huge wildfires of escalating behavior without realizing the proverbial cigarettes they’ve thrown onto the ground themself.

This post was inspired by today’s prompt for Stream of Consciousness Saturday: “perfection”. I am sorry for being repetitive yet again. This whole care home situation is getting old, but I wish that meant I’d actually adjusted to it. I’m not sure I ever will.

It’s All a Blur

Posted on by Astrid

It’s all a blur, this life of mine. Moments, days, weeks, months – maybe soon years, who knows? – roll into each other. I don’t like it one bit, sorry not sorry.

I may not be able to fully lay the blame on my current care home with its chaotic and yet oh so boring routine and no day activities whatsoever. I might be able to create my own routine that would somehow differentiate between mornings and evenings, weekdays and weekends, summer and winter. If only I knew how.

This post was written for this week’s Six Sentence Stories link-up, for which the prompt word is “blur”.

Ideal Isn’t Real

Posted on by Astrid

Today is the day the word I picked for #JusJoJan was assigned to, so I’m pretty much obliged to write a post. My original choice for a word was “Home”, but I made up my mind as I wrote my comment on Linda’s post and chose “Ideal”. My plan was to then write about my ideal care situation.

I am not sure I can do it though. An ideal situation, after all, doesn’t exist and chasing it may mean I lose sight of the things I could appreciate in what I already have. That’s possibly what happened with the move to my current care home, much as I struggle to admit it.

Of course, I knew there were going to be drawbacks to this care home, but I minimized them in my mind. When, back in like late 2021, I read up the information on this care home on my agency’s website, it sounded ideal. In fact, I remember at one point telling my staff and some people on an E-mail support group I belong to that it was my dream care home. But that’s judging from a promotional webpage, not reality.

Then when I actually got the opportunity to go here, what I found out on my visits here indeed revealed some more negatives. However, for the most part, these were vague “gut feeling” negatives, not facts. A factual negative was the fact that staff here don’t tell us clients who will be on shift the next day, reasoning that they might fall ill. “But we all come back,” the support coordinator reassured me, “and if we don’t, we’ll tell you.” Well, the one time a staff left so far, I didn’t find out in advance.

Maybe, looking back, there were clearer signs than just my gut feeling that the dream care home was going to turn into a nightmare. I am not sure. Maybe I didn’t ask the right questions. Maybe the staff – purposefully or not – avoided answering the real questions, focusing instead on details. Either way, I can’t help it now. What I can do is never believe something is going to be ideal again. Ideal isn’t real, after all.

TGIF: Walking and Crafting

Posted on by Astrid

Hi everyone on this third Friday of November. I’m joining Paula Light for TGIF. How is your day going? Mine’s almost over, as it is 9PM as I type this.

I had a pretty good day. Have had an okay week in general anyway. Finally got down to creating my first actual polymer clay piece here at the new care home, a flower. Creating this simple piece took me about 45 minutes yesterday, including gathering my supplies, watching the tutorial, conditioning the clay, etc. The piece nearly got ruined when the staff took it off the tile to transfer it to an oven-safe mat, but thankfully she was able to put it back together. I initially didn’t want to cure the clay because, once cured, if a piece is ugly beyond sanding/buffing, all you can do is throw it in the trash. However, after some thought, I decided I wanted something tangible to remember my first actual claying session in the new care home by.

As those who’ve seen my creations from back at the old care home, will know, this one can’t compare to those. However, I feel judging from the fact that I haven’t been actually working with clay in a long while, I did an okay job.

I also went on several walks this past week. Haven’t met my step goal, insofar as I have one – those who know the Apple Watch, know its movement goal is calorie-based, not step-based -, but I have been doing an okay job overall. My movement goal, by the way, is easy to reach. My exercise goal, not so much. My monthly goal for November on the Apple Watch is to reach my daily exercise goal 23 out of 30 days. I reached my monthly goals for September and October – different goals – with ease, but am struggling with this one, because walking and dancing are my only ways of exercising here now that I don’t have my elliptical anymore. I could cheat by starting some ball game workout when throwing a ball with my staff, but that’s not fair.

Overall, this week is going okay with respect to my care. A slightly modified version of the day schedule I mentioned last Saturday got shoved down my throat once again on Tuesday, but thankfully, most staff are willing to take it with a grain of salt (or a whole bucket of salt).

Unfortunately, the situation had to get worse over the weekend before it got slightly better and the slightly better (ie. an okay week this week) might just be chance. I won’t disclose details of the, in my opinion, unacceptable care I received over the weekend.

I talked to an independent mediator about my care situation today (this is not a secret, all staff know I did). I won’t disclose what exactly we discussed, but we’re hoping to resolve the difficult care situation as peacefully as possible.

Here’s hoping you’ll all have a good weekend.

TGIF: Lonely in a Crowd

Posted on by Astrid

Today, Paula Light talks about loneliness in her TGIF post and I thought I’d follow suit. There is this weird feeling when you feel loneliest when surrounded by a roomful of people. I’ve been feeling this way lately.

It’s not as bad as it was during my high school years, when I felt isolated in the full cafeteria because I knew no-one wanted to talk to me. I mean, back then, especially in the first year, classmates were assigned to guide me through the building and I’d be sitting during lunch break with whoever was my guide for the day. It was very obvious that most if not all classmates didn’t want me there.

The situation is different now. My fellow residents definitely do seem to want me in the living room with them. Several ask when I’m coming to have coffee there again as opposed to in my room. Some specifically come out of their rooms to join me when they hear my voice. In short, it isn’t that I’m unwanted.

And in a sense, it isn’t that I can’t connect either, although that’s probably more where my loneliness is coming from. I struggle to strike up conversations with my fellow clients especially when more than one person is talking at the same time and even more so when the staff are having a separate conversation among themselves. I also get overloaded really easily, but don’t tend to notice until it’s too late. As a result, I struggle with a need for connection but also a need for a sensory-friendly environment and these often clash. Lately, I’ve chosen connection, but I fear this will lead my staff to decide I am ready for less one-on-one support. I don’t want to be seen as too demanding of attention, but when my needs clash, I really do need support to find the right balance.

Meh #SoCS

Posted on by Astrid

Hi all. Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “me”. We’re supposed to either use the word as it is or find a word that starts with “me”. The first word that came to mind somehow was “meh”. And how fitting! I am sick to my stomach again. I will spare you the details but it’s not pleasant. And I’m supposed to write lots of things, as it’s the start of #31Days2022 and Blogtober and all. Oh well.

Last Tuesday when I was sick too, it lasted only a couple of hours, so I am hoping it will go away by the evening. That way, I could write a proper post once my one-on-one leaves at 8PM. That’s of course not the main reason I want my sickly feeling to go away. I mean, if I remain sick until Wednesday, will I be able to move that day?

Of course, I’m hoping I won’t give my sickness to anyone else either. I’m not running a temperature, thankfully. My husband thinks it’s food poisoning. My staff think it’s stress. I hope in any case it will leave my body soon (and not in the way it’s leaving my body now, honestly). Oh wait, that’s a bit TMI. Oh, see, writing it down either helps or it’s indeed getting better. Let’s hope.

TGIF: October

Posted on by Astrid

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.

My New Home? #SoCS

Posted on by Astrid

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.

What Will I Leave Behind?

Posted on by Astrid

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”.