#WeekendCoffeeShare (July 29, 2023)

Posted on by Astrid

Hi everyone. It’s been a while since I last joined in with #WeekendCoffeeShare, so I thought I’d write a post for it. I just had my evening coffee, as is usual when I sit down to write these posts. I may still grab a cup of green tea later though, since, like I mentioned yesterday, I started using the Water Reminder app again. If you’d like a drink, cold or hot, join me and let’s chat.

If we were having coffee, I’d first share about the weather. It hasn’t been summerlike, honestly. Rather rainy and the daytime temperatures barely got above 20°C. It isn’t supposed to get any better soon.

If we were having coffee, then I’d repeat myself by shouting off the rooftops for all of the Coffee Share crowd to hear that YAY, I AM MOVING!!! Of course, as those who read my post from Monday will know, I hardly know any details about my new care home and a moving date hasn’t been set. However, the bits of information I do gather, make me feel like this could be quite positive. I mean, it’s not likely my dream home or anything, but then again that was supposed to be this one, only that dream turned into a nightmare.

If we were having coffee, I’d tell you that I’ve been spending more time among my fellow residents lately. It’s not really my choice, truthfully. In part, it’s because I look for familiar faces in the communal room when I get assigned the umpteenth new temp worker. Then when I do get a familiar staff, they often ask me to join the group too. This morning, my one-on-one for the moment sincerely claimed another resident had asked me to come play a game of dice, but I’m not 100% sure it’s true with all the times the staff are initiating it. For those who don’t know, me being in the communal room, unless I’m indeed playing a game with the aforementioned fellow resident, usually means me sitting around doing nothing while the staff chat among themselves or scroll on their phones, thereby my not doing any meaningful activity. Besides, I usually get overwhelmed very easily, but the staff expect me to be able to tell them rather than them picking up on my signs. Today, I was extremely overloaded for over an hour after spending not even twenty minutes in the living room. With the fact that I’m moving, I’m not sure whether the staff want me to practice functioning in the group more so that they can lessen my one-on-one, as that wouldn’t benefit them at all. However, I don’t see any other reason for them to initiate me being in the group so often.

If we were having coffee, then I would tell you I closed all my rings on my Apple Watch every single day this week so far. That’s quite an accomplishment lately, as in late June, I broke my 300-odd day streak of meeting my movement goal and I once again didn’t meet it last week. I honestly have been rather unmotivated in the exercise department recently. This week though, I logged more workouts – mostly walking – than last week.

If we were having coffee, lastly I’d share that I’ve generally been really uninspired over the past couple of weeks. I did make some simple smoothies with my new blender earlier this week, but other than that, I hardly did anything creative. I can only hope I can change this sooner rather than later.

Hello Monday (July 24, 2023)

Posted on by Astrid

Hi everyone. I’m joining Hello Monday for a weekend recap. The weekend was a true mixed bag, but those who know how much I’ve been struggling please do read on till the end for some exciting news.

Saturday was a truly crappy day. I got a total stranger as my one-on-one for the morning. This is not unusual, but the crappiness started as soon as I voiced my discomfort with her being a total stranger. Rather than try to comfort me, she was like: “What about if I leave you alone till coffee time?” Coffee time is at 11AM and it was just past 10AM. I said no, because despite what the staff here seem to think my one-on-one isn’t a mere suggestion. Fifteen minutes later, she was like: “I haven’t had breakfast yet. I need to grab some food, see you at coffee time, okay?” I went to the communal room, where my assigned staff happened to be, who set this straight with my would-be one-on-one. After that, we played some card games, had coffee and then she quickly decided to swap places with another staff. He’s not a stranger. Not someone I get along with, but at least I know what to expect of him (which is very little, to be honest).

In the evening, there was a staff shortage until 6PM and of course I was asked to come to the communal room to unburden the staff (his literal words). Then I got a staff I barely knew once again and only could play card games once again.

Sunday was better. I did get an unfamiliar one-on-one in the morning, but at least my spouse came by for a visit. We once again drove to Apeldoorn for lunch at Backwerk and hopped into Holland and Barrett for some essential oils. My spouse got a discount card even though we rarely shop there.

In the evening, my new support coordinator – did I share my old one left the agency a few weeks ago? – was my one-on-one for an hour. We went for a walk and discussed some aspects of my care, both unaware of the E-mail landing in my inbox at 7PM. My mother-in-law had forwarded it to me. It was originally sent to her at 11AM that morning. The subject line read something like: Painting Astrid’s new room.

The E-mail started with something like: “I am [name], support coordinator for Astrid’s new care home, [home].” The person writing the E-mail then went on to tell my mother-in-law that, when moving, a client can have one wall in their room painted in a desired color, and which color would I like?

I had heard my assigned staff mention this home among the possible homes considered for me, but I had absolutely no idea I had been accepted into it. I don’t know anything about the home other than what the care agency’s website says, which isn’t to be trusted due to the fact that they make things look better than they are. However, it isn’t really like I care. Any small improvement over the care I receive here is greatly appreciated.

Today, I confirmed with my support coordinator that I am indeed moving to this home. When the move will be, is not yet known for sure, but I’ll find out about two weeks in advance and be able to take a look around a few days before the actual move.

And for those who are wondering, I chose lilac as the color for my wall.

Physical Discomfort

Posted on by Astrid

I have been experiencing a lot of nausea lately and a bit of a decreased appetite. At first, I attributed the nausea to stress, then norovirus which was making its rounds here at the home. I was really sick with diarrhea and vomiting for only a few hours though, so it’s not even certain I had the virus.

If I have to be true to myself, I’ve been feeling a little unwell for a couple of weeks already. However, it’s really hard for me to tell when I even feel physically unwell and, if so, whether it’s “just” being a little off or it’s something I might need to see my GP for. For this reason, I usually keep going with physical discomfort for months. And even though alertness to my physical wellbeing is one of my care goals, my staff expect me to be able to signal to them when I’m having symptoms (and even when I do, it takes forever for them to take action).

Today, I did ask my staff to call the GP surgery tomorrow to inquire about my kidney function. It’s been decreased for at least a year and, even though I’ve had regular blood tests, I haven’t seen or been told of the results since the summer of 2022.

And guess what? Nausea and decreased appetite are a possible kidney disease symptom. So is itchiness, which I’ve had very badly for months. I don’t mind either symptom as much, in the sense that despite the decreased appetite I’m still eating well and I could continue putting cetomacrogol cream on my skin forever if the itch is nothing to worry about. But I want to make sure my kidney function hasn’t gone significantly further down.

And if it has – and honestly, even if it hasn’t -, I want a consultation with a psychiatrist to discuss tapering my psychiatric medications. I know, the ones that could cause kidney failure are the last ones I started – topiramate and pregabalin -, but I doubt either is very effective. Besides, I just don’t want to keep adding on to my med pile and, if my kidneys show further damage, I’ll need to go on meds for that too.

Let’s hope the staff don’t forget to actually call the GP tomorrow.

How My Attachment Style Affects My Decision-Making

Posted on by Astrid

Hi everyone. I have been contemplating my decision to move to my current care home from the previous one a lot lately. My assigned staff often asks me whether I might be a little too critical, because my old care home offered near-perfect supports and yet I wanted to leave. Indeed, it could be this is a factor. I’m an Enneagram type 4, after all, always looking for that elusive ideal.

However, I am also insecurely attached. Attachment is formed in early childhood between the infant/toddler and their primary caretaker. When there is frequent disruption in this attachment and/or the caretaker isn’t a safe person for the child (as in the cases of neglect or abuse), this attachment doesn’t form or forms insecurely. This then will lead to problems later in life with relationships, both romantic and otherwise.

The different attachment styles described differ per professional, but I primarily score as anxious-preoccupied. This means that I am essentially looking for close connections to people, be they my romantic partner or otherwise, but also intensely fear them abandoning me. I also relate strongly to the ambivalent attachment style, which is essentially a mix between avoidance and preoccupation. This would explain why I push people away when I sense they might be abandoning me.

This is where my decision to move out of my old care home comes in. Starting at the end of 2021, half the team of my old care home left their positions, including some staff I could get along with really well. I remember, shortly before making the decision to ask my assigned staff to involve the behavior specialist in finding me a new home, E-mailing that same assigned staff. The contents of the E-mail were rather, well, needy. I expressed the fact that I knew none of the staff currently working at my home could guarantee they’d remain with me for months, let alone years to come. I probably even mentioned my spouse, who, though we have zero intention of divorcing ever, might leave me eventually. That’s life. No-one can predict the future. And honestly, it kind of sucks.

Though my then assigned staff assured me my E-mail had nothing to do with it, she did indeed quit her job several months later. However, the fact that the team as it was when I got my one-on-one support funding, had pretty much fallen apart, gave me the impression I didn’t need to stay for the team. And since otherwise the home wasn’t suitable for me – because the other clients couldn’t speak and needed far more physical care than I did -, I started the search for a more suitable home. Which, as regular readers of this blog will know, I didn’t find. I mean, yes, my fellow clients can speak, but the support approach is very different and not in a good way from what I got at my old home.

My attachment style also means I often come across as very trusting, because I at least initially accept everyone into my life because I have such an intense fear of aloneness. This is often misjudged to be a sign of secure attachment. In fact, recently a relatively new staff tried to get me to join him on a car trip to get food for just the staff during my designated activity time. I felt kind of lured, because I didn’t want to but he was like “it’s fun, I’ll buy you a treat too” and then I didn’t feel comfortable refusing anymore. This should’ve been a big no-go had this person not been a staff member, but since he’s a staff member it was okay, according to one of the other staff I talked this over with. What this staff didn’t realize is that I’ve had previous experiences of risky encounters with men and a history of being a victim of sexual violation too. And, though of course my easily accepting others isn’t to blame for any victimization (that would be victim blaming), it is important to realize I don’t distinguish between those in a position to help me and those who aren’t, like that staff person believed.

#WeekendCoffeeShare (June 23, 2023)

Posted on by Astrid

Hi everyone. I’ve once again been feeling really unmotivated to blog. I didn’t even bother with the Wednesday HodgePodge this week. Today though, I want to write. I’m joining the #WeekendCoffeeShare linky. It’s been a while. I already had my last cup of coffee for the day, but we all need to stay hydrated, so if join me for a glass of water, that’ll be fab.

If we were having coffee (or water, but I always start my paragraphs this way), I’d start out by sharing about the weather. Ours has been mostly sunny and warm with daytime temperatures of about 27°C. On Tuesday we had a thunderstorm here and on Thursday it rained continuously all evening. My spouse loves thunderstorms, but Lobith didn’t get any.

If we were having coffee, I’d tell you I have been struggling quite badly lately. The staff here seem to have decided to consistently send the least familiar to me staff member they have on board to do my one-on-one, even when that staff isn’t the least familiar with the other clients. I am of course the one labeled manipulative when I get irritable at the unfamiliar staff. I originally wrote a long rant about this situation, but deleted it because really it doesn’t help anyone.

If we were having coffee, I’d share that, due to these difficult circumstances, I’ve been feeling rather depressed and not as motivated to do much of anything. I keep playing dice games on my phone in an app called Dice World. I also play dice with most staff.

If we were having coffee, I’d share that my sister and her family are coming to Lobith tomorrow for an early birthday celebration for me. I will be in Lobith by about 11AM, though my sister won’t be there till 3PM or so. Unfortunately, on Sunday, my mother-in-law has to be on call for the animal rescue service she does volunteer work for, so we won’t be going there.

On Tuesday, which is my actual birthday, we invited my parents to come to Apeldoorn. We’ll hang out in a park close by where I grew up and then in the evening we’ll have dinner at a Thai restaurant.

I finally decided today that I do want to celebrate my birthday at the institution after all. I’m going to make cheesecake on Monday and we’re going to have French fries and a snack for dinner then.

If we were having coffee, lastly I’d tell you that I finally used my alcohol inks on a polymer clay project. I made earrings, of course. They’re a bit thick and I later found out my particular brand of alcohol inks isn’t very light-resistant, so the color will probably fade rather easily over time. At least now I know I can use my alcohol inks.

Also, I may get my ears pierced someday. I had my ears pierced in 2001, but wore large silver earrings right after the thingies they shoot into your ears when they pierce them. Thing is, I’m allergic to nickel and silver often contains that, so I got bad inflammation and eventually decided to let the holes close up. Now though I really want to be able to wear earrings again. My assigned staff offered to take me, so that’d be really cool.

How have you been?

How I’ve Focused My Attention and Energy on What Is Missing As an Enneagram Type Four

Posted on by Astrid

I’ve been meaning to write more, seriously. There’s a lot on my mind, but somehow I can’t find the words to express myself. To get started, I chose a prompt from the Enneagram-based journaling prompts book I own for my type. As those who’ve read about me and the Enneagram before will know, I’m a type Four or the “romantic individualist”. The first prompt for my type in this book asks me how I’ve focused my attention and energy on what is missing.

On the surface, this seems to resonate with me, in that I’m always looking to improve my situation even when I’m relatively content. I don’t mean right now – right now I’m far from relatively content. However, back when I was in my former care home, honestly I had it pretty good and even so I was focusing on what was missing. In that case, this was, among other things, a sheltered institution environment. I badly wanted to live on institution grounds and completely lost sight of what I would lose if I took the leap to move here. And that was a lot.

In a sense, focusing on what’s missing isn’t necessarily bad. It allows a person to consider steps to improve their life. For instance, something I’ve often missed is to be a more contributing participant in my care home. Today, my assigned staff and I were discussing my birthday and I mentioned wanting to help cook the meal one of the weekend days (the staff only cook homemade meals on weekends now) around my birthday. She told me this doesn’t need to wait till my birthday and we now have a plan for me to help cook köfte for the home next week.

Often, in this sense, a wish to improve my life starts with something I’m missing. At other times, it starts the other way around, with an impulsive idea to buy something only for me to realize later on that something I feel I’m lacking in is underneath this impulsive idea. An example is my former assigned staff at my old care home having mentioned the idea of me getting a mini fridge. I got all excited, started thinking up ideas, but eventually it turned out I was missing certain supports.

As an Enneagram type Four, I am always longing for something. In this respect, the idea that I’m “always dissatisfied”, as my staff think, is sort of correct. That doesn’t mean I need to settle for something that’s absolutely unsuitable, like my current care home, though. Yes, I took the leap, but that doesn’t in itself mean I am forever stuck here. I am hoping that, if I ever find a place to live that is slightly less unsuitable than my current care home, I can stop chasing the ideal and start embracing what’s missing as an opportunity for growth in myself as much as for improvement in the situation.

Linking up with #PoCoLO and #SpreadTheKindness.

Youth: Issues Specific to Intellectually or Developmentally Disabled Children #AtoZChallenge

Posted on by Astrid

Hi everyone. Phew, we’re almost done with the #AtoZChallenge. For my letter Y post, I thought I’d talk about issues specific to youth with intellectual and developmental disabilities.

Children, disabled or not, by definition, are still growing and developing towards their full potential. As a result, most developmentally and intellectually disabled children and young people will not qualify for long-term care. They are, instead, served under the Youth Act, which falls under the local government. This means that their parents or carers will need to reapply for care at least every year.

Most children with intellectual or developmental disabilities will go to school. Like I mentioned before, those with milder disabilities, due to “suited education”, are forced to go into mainstream classes. This particularly applies to autistic or otherwise neurodivergent children with an average or above-average IQ, but when doing research for this post, I found out that children with a mild intellectual disability (IQ 55-70) won’t qualify for special ed unless they have additional needs too.

Children with moderate to severe intellectual disabilities and those with mild intellectual disabilities and additional issues will usually go into special education. Usually, these schools have different educational levels depending on the severity of the child’s disability. I heard that some schools allow pupils in the highest level to take part in the lowest level regular school, called practice education, part-time. Practice education has only recently become part of the regular, diploma-earning educational system; until I think last year or the year before, pupils in these schools would just earn a certificate.

The most profoundly disabled children, who are deemed “unteachable”, will go to day centers for children and adolescents with intellectual disabilities. Some of these day centers do have a “school prep” group too.

I feel very strongly that “suited education” and the Youth Act leave behind a lot of children with intellectual and developmental disabilities. I mean, the government wants to cut the youth care budget even more and, though I understand this given the fact that one in seven children nowadays receives a form of youth services, this should not affect children with genuine intellectual and developmental disabilities. Like myself twenty to thirty years ago, though in my case being left behind was due to my parents’ denial.

Unique: A Rant on the Demise of Individualized Care #AtoZChallenge

Posted on by Astrid

Hi everyone. Today for my letter U post in the #AtoZChallenge, I want to rant really. I am not feeling well and really feel like, as an individual with developmental disabilities, my unique needs are missed in favor of what “everyone” or “the group” needs.

Back in like 2009, on my first WordPress blog, I already wrote a blog post criticizing care profiles for their doing away with individualized care. After all, care was now grouped into “care heaviness packages” (the old word for care profiles) based solely on one’s primary disability and one’s score on a rating scale, rather than there being different care classifications for each different sort of care (eg. support, personal care, housekeeping, etc.).

This is not what I want to talk about in this post though. Rather, I want to talk about the individual’s care needs being shoved under the carpet because they do not align with what that particular home is used to providing in general. And, in the case of my current home, it isn’t like there aren’t exceptions.

I cannot go into detail without breaching confidentiality – although really the staff shouldn’t have told me confidential information about other clients, truthfully. However, my home consists of “the group”, which are six clients or six clients plus me, and then there’s either me or I’m part of “the group” depending on whom you ask and when, and then there’s a client who gets full-time one-on-one. The one-on-one client is exempt from almost everything “everyone” needs to deal with, such as temp workers, regular switches in staff, of course alone time, etc. I don’t know all the reasons behind this and even if I did, I wouldn’t be allowed to disclose them here, but I frequently find myself being jealous of this client because her needs seem to take precedence over everyone else’s.

Then when competing for having our needs met, it’s me against “the group”. The home employs an extra full-time staff member to do my one-on-one even though I don’t qualify for full-time one-on-one, so I figured this should be a no-brainer: we all get our needs met, since I’d get my one-on-one and then there’s still even some hours when there’s an extra staff for “the group”. “The group” should be in luck! Well, no such thing: I am in luck if I get my one-on-one according to my day schedule and even then staff complain that I ask for too much if I ever so much as dare leave my room once during my time without support.

As for the temp workers, well, my needs get met last, because “the group” needs at least one regular staff and even if there are three regular staff members on shift, usually the fourth will be sent to support me so that the second won’t have to explain too much to number three.

In another situation, too, my individual needs get shoved under the carpet in favor of what “everyone” needs, ie. when I’m treated harshly for having a meltdown. I often hear staff say that they’d treat my fellow clients the exact same they treat me. Well, it may be so, but I’m not my fellow clients. I am me and I have my own unique needs.

Technology and Its Usefulness for People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. I am back with my letter T post in the #AtoZChallenge. Today, I want to talk about technological advances and their usefulness (or lack thereof) for people with intellectual or developmental disabilities.

There exist a myriad of technological devices to presumably help people with intellectual or developmental disabilities. Some include alternative and augmentative communication (AAC) devices. While these are not for everyone, some people definitely benefit from them. Some of these technologies require a special device, but there is an increasing number of AAC apps available for conventional smartphones and tablets.

Other technologies are used to help people with more severe intellectual or developmental disabilities have different sensory experiences. For example, there’s a thing called the CRDL (pronounced “cradle”), which can be used by a disabled person along with their caregiver. When the device is touched in various ways, it produces different sounds and if I’m correct even vibrations.

Other pieces of technology merely help a person to relax, such as the InmuRelax, a sort of pillow which produces a soundscape when held in order to calm people during the night. Having used the Inmu a few times, I can say I prefer my music pillow, which is far cheaper.

Then there are of course interactive “pets”. These are not stuffed animals and should not be treated like toys, so people with severe or profound intellectual disabilities are probably not suited to handle them. Rather, they are electronics with some fur around them to make them look like real-life cats or (small) dogs, which people can then stroke or cuddle with gently. These interactive animals are mostly intended for people suffering from early to mid-stage dementia rather than for the intellectually disabled, although I’ve seen them being well handled by more capable intellectually disabled people who realize these are like pets, not toys.

Lastly, there currently is a research project going on with “social robots” in long-term care for people with intellectual disabilities. These robots could be programmed to, for instance, remind clients to take their meds, do certain tasks, or they could even ask them questions. It is kind of intended that the robots would become a “buddy” to the intellectually disabled person. I honestly cringe at the idea. Not the reminders or even if the robot woke me up with a cheery “Good morning, Astrid, what would you like for breakfast?”. I am reminded of a time my psychologist, back in like 2013, asked me whether I was okay with a robot doing my morning routine. When I said “Hell, no!”, she saw this as a sign of dependence. I currently start my day on my own anyway, so whether it’s my vibrating, beeping Apple Watch waking me up or a robot, I don’t care. And as for the reminders, I’ve actually thought about asking my staff to help me learn to use a day scheduling app. However, the cringe-worthy thing for me is the “buddy” part. Yes, I know long-term care needs to be cut, but a robot isn’t going to replace human interaction if you ask me.

Restraints and Other Restrictive Measures in the Dutch Care System #AtoZChallenge

Posted on by Astrid

Hi everyone. Today, it’s time for my letter R post in the #AtoZChallenge. I didn’t know what to write about for this post, so I looked at some books for inspiration. Then, the topic of restraints came up. This is quite a controversial one and sadly restraint and other restrictive measures are still commonly used here in the Netherlands. At least here at my current care home.

In the Netherlands, in 2020, the Care and Force Act replaced the law on exceptional admissions to psychiatric hospitals that previously regulated restrictive measures. Under the old law, only those involuntarily committed to care facilities or psychiatric hospitals could be subjected to restrictive measures against their will. This was not to say people weren’t pressured into consenting to restrictive measures. For instance, when I had been at the locked psych unit for a few months in early 2008, I was significantly dysregulated. My doctor told me she was implementing seclusion and, “if it doesn’t work, we’re going to file for involuntary commitment”. She should have said “if you don’t consent”, but I had no idea I even had a right to consent.

Under the Care and Force Act, anyone receiving care can be subjected to restrictive measures, which are euphemistically and rather incorrectly called “involuntary care”. Yes, even people receiving care in their own homes. And like I said “involuntary care” usually isn’t care at all, but are measures to restrict someone’s freedom, often in the absence of appropriate care. For instance, if a person with dementia lives independently, they can be involuntarily prevented from entering their own kitchen if they’re a risk of leaving appliances on.

I don’t know the exact criteria for people to be subjected to restrictive measures. It has to do something with risk of significant detriment to the client or others. I was, at my old home, subjected to some restrictive measures. For instance, several doors were locked at night because I would enter those areas (eg. the kitchen) and be a danger to myself there. Here at my current home, the door to the living room and all entrances are locked at night anyway and have been from before I came here. I do know at least one fellow resident is locked up in her room at night. This, to me, feels a bit unfair, particularly because there’s no night staff directly available and the ones in the main building usually just tell us to go back to sleep when we press the call button.

Restraint specifically – restricting someone’s physical movement – is also commonly used here. I, thankfully, have only been physically dragged by several people a few times and was never shoved to the ground or forcibly held in position.

The author of the book I read, which is a parent’s guide to autism, recommends not reacting to a disabled person’s meltdown at all unless in such a way absolutely necessary to keep them and others safe. I am not sure I agree, since honestly I don’t feel that many people with developmental disabilities do have the self-regulation skills necessary to calm themselves. In my experience, “crying it out” will not teach them those skills, but will teach them that you’re not available. In the same way, I honestly don’t feel that someone will actually have a meltdown just so they can be restrained, as the author claims. I, honestly, have never felt that having my movement restricted was comforting.