Asserting My Rights

Posted on by Astrid

Hi everyone. Yesterday’s WordPress daily prompt was interesting. It asked us to explain what freedom means. I was originally inspired to write a post about human, civil and disability rights as they apply to my situation, but got distracted by family matters.

After last week being dragged to my room by both arms by two staff for the crime of being in the living room outside of my allocated one-on-one time and appearing (slightly) in distress, I decided to contact the client confidante on involuntary care. I remember writing about the Care and Force Act when it was just being introduced and being offended at the fact that it applies to anyone receiving care due to an intellectual disability (including acquired brain injury) or neurocognitive disorder (like Alzheimer’s, Huntington’s, etc.), not just institutionalized people. Like, under the old law, you had to be detained in an institution first before anything could be done against your (or your guardian’s in the case of being incapacitated) will. Now even those still living independently can receive “involuntary care”. And just for clarity’s sake: “involuntary care” is a euphemism for anything being done against your will, including being locked in or out of a room, forced medication, etc. As an example, if someone with dementia constantly leaves the stove on, they can be involuntarily locked out of the kitchen. Yes, even in their own homes!

However, after speaking to the confidante, I realized the Care and Force Act isn’t a free pass to do as you please if you happen to be a care provider. In fact, I’m now pretty sure that it’s indeed giving the client more rather than fewer rights, at least if they (or their guardian) knows how to assert those rights. And I know now!

Yesterday, the client confidante came by to discuss last week’s incident with me. I had given both staff involved one chance to talk it over with me before. The one leading the “involuntary care” wouldn’t budge and told me she’d talked it over with the behavior specialist, team leader and my assigned staff. She kept claiming forcing me to my room was in the other clients’ best interest. I learned yesterday that the Care and Force Act isn’t about best interest, but about “significant disadvantage”. This means that someone (either the client involved or someone else) has to be at risk of suffering significant harm (in any form, including psychological) if the “involuntary care” isn’t provided. It also requires that “involuntary care” be the last resort. In this case, the staff asked me verbally to go to my room twice, then threatened to ask her coworker to “help” then gestured to her and then they dragged me to my room. That’s not a matter of last resort!

The other staff involved used to be one of my most trusted staff. She initially blamed her coworker for forcing her into a quick decision, until I learned that they’d talked it over before I even went into the living room. Then she finally half-heartedly apologized.

This incident, however, was only the final straw again. After talking to the client confidante and being informed of my rights, I feel that a can of worms was opened of things that staff (used to) do against my will.

For example, this home is locked as a measure of “involuntary care” for two fellow clients at risk of eloping. This is in itself a questionable measure, but the thing affecting me is my being given a black-or-white choice between the door being opened at every hint that I want to leave or my not being allowed to leave the home without explicit permission at all. A similar thing is staff constantly telling me they aren’t allowed to force me into activities as an excuse to lay back at my every hint that I don’t want to do a certain activity.

Another example is the client portal with my records. I have requested access to it multiple times but the question has always been flat out ignored.

I called the confidante this morning requesting that I be allowed to E-mail her with my further concerns/questions. I did so this afternoon. Earlier this evening, fear hit me hard. What if the powers-that-be decide to give me a choice between consenting to whatever they please and being kicked out? This happened once in the psychiatric hospital and well shotgun consent but they got it.

Same when the social worker threatened to declare me incapable of decision-making and make my parents my guardian unless I signed application forms for a home everyone should’ve known I didn’t meet the criteria for. I sent the confidante another E-mail this evening asking whether the institution could legally do this and, if so, whether there’d be any chance that my parents or sister would be appointed as guardians rather than my wife, especially after our divorce.

The confidante will E-mail my support coordinator asking her to schedule a meeting between her, the behavior specialist and me with the confidante leading the process. She told me I’m allowed to file a formal complaint after that. I’ll give it some thought, but that causes me intense fear too. After all, even if no-one can legally threaten me with forced discharge or guardianship, that doesn’t mean they won’t try.

#WeekendCoffeeShare (July 26, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s 9:45PM, so all I’ll have to drink before going to bed is water. I don’t mind though and hope you don’t either. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been raining all week, but temperature-wise, it’s been nice. We had daytime highs in the low 20s Celsius most days. Today, the temperature rose to 25°C. I hadn’t expected it to rain, so didn’t take a jacket with me when driving to Apeldoorn with my spouse. Thankfully, it only rained when we were in the car or somewhere else inside.

If we were having coffee, next I’d share that my spouse and I may not be divorcing after all. It’s a long story that is too personal to share on a public blog. The short version is that I sent an impulsive text last week asking my spouse to finally make arrangements, because I wanted to live independently. The reason for the text had nothing to do with my spouse, but it did get things set in motion. As it turns out though, it’s probably not practically in our best interest to divorce.

If we were having coffee, I’d go into the reason for said text: one of my “favorites” among the staff is leaving and this is at a time when I’m struggling significantly with most other staff seeming at once not to agree on any way to support me but somehow agreeing that I’m a pain in the neck. At least on a weekly basis, I hear stuff like “You can’t go anywhere anyway” or “Your spouse doesn’t want you in this state” when I’m being restrained or otherwise having my autonomy taken away.

Furthermore, it looks like my staff have decided that neither I myself nor my spouse have my best interest in mind, while in that order, we’re the ones most adamantly advocating for me. However, I saw impulsive comments my spouse made after we found out divorce may not be an option cited in my report. This wouldn’t have been such a big deal, had staff also objectively reported their own comments, like all the “You can’t go anywhere anyway” stuff. The way it sounds now, my spouse sounds like the bad one.

One of my assigned staff even got me to agree on getting more information about guardianship because she somehow feels that a person who doesn’t know me but knows the law is better able to make decisions for me. I have yet to tell my staff no on this one.

If we were having coffee, I’d share that I did finally work with polymer clay again. I made a parrot for the staff who’s leaving, because this staff has two parrots. We have plans for making her other one out of polymer clay sometime this coming week.

If we were having coffee, lastly I’d share that I’ve been obsessing over recipes and cooking again. Like I said yesterday, I made a curry for myself and my fellow residents on Tuesday. The staff who helped me with it, proposed we do cooking again this coming Tuesday. This time, I chose a pasta bake. I’ve also been making smoothies and overnight oats recently.

I have an app on both my PC and iPhone to organize my recipes. It’s called Recipe Keeper and I’m half convinced it’s spyware like TikTok. Other than that, its only drawback is the fact that somehow I can’t have my password manager remember the password. This has me paranoid too. However, it’s the only app that’s available on both iOS and Windows that is remotely useable for me.

Mother’s Day

Posted on by Astrid

Today is Mother’s Day in the United States as well as here in the Netherlands. I’ve seen lots of ads for it floating by for weeks. It’s probably been this way forever. That being said, I never quite paid much attention to Mother’s Day after getting out of elementary school. Back in the day we did the obligatory Mother’s Day crafts. Since my mother has her birthday in late April, she never quite cared (or we conditioned her not to).

I started caring again, at least a little, when I got out of the psychiatric hospital and started day activities at a center for people with intellectual disability. Most other clients still made crafty things for their mothers. I decided to join in and create something for my mother-in-law.

You see, I have never had the best relationship with my own mother. She no doubt loves me, but the way she expressed it when I was growing up is, well, kind of odd.

That plus my mother’s late April birthday means I never quite honored her for Mother’s Day. My mother-in-law though has her birthday in late November.

My own parents have always been big on independence. I understand, but they took it a bit too far given that I’m multiply-disabled. They pretty much left me to my own resources by the time I left high school at age nineteen.

My mother-in-law, on the other hand, has offered to be my informal representative with my care agency. This means that she’s invited to care plan meetings and would be appointed as my guardian should I ever become incapable of making my own decisions.

One time before I was dating my now husband, I too had to appoint an informal representative for a living facility I was on the waiting list for. I appointed my father, but wasn’t happy about it. I do trust my parents to leave me to my own resources, but I don’t trust them to be there when I actually do need them. What I mean is, I am confident that they won’t approve of restrictive care measures without my consent, but I am pretty sure they will rather advocate for me to be kicked out of care.

With my mother-in-law, I am pretty much on the same page. I am not sure she’s seen my current care plan, but she has talked about it in a way that suggests she knows and understands my need for intensive support. Even my husband doesn’t know some details she appears to be in the know about.

My husband jokingly calls my mother-in-law my adoptive mother. If adults can adopt a mother, that’s quite exactly her. I am glad to have her. And just in case you were wondering, yes, my own mother is happy for my mother-in-law to be my informal representative.

Decisions

Posted on by Astrid

This week, V.J.’s weekly challenge is all about decisions. V.J. is facing a decision regarding an opportunity to buy a house.

My husband and I faced a similar decision last summer. I had been approved for long-term care funding on June 4. This would mean higher costs for my care, as the copay for long-term care is several hundreds of euros a month, while the copay for community care is at most €19. This made our search for a house to buy more urgent. After all, mortgages are usually cheaper than is rent on a similarly-priced house. We had inquired about buying the house we were renting at the time, but the housing corporation had refused.

My husband did most of the visits to possible houses by himself, including the one to the house we ended up buying. This house was about the only house within our budget that wasn’t falling apart or being rented out for an undefined time. The latter of which is illegal, but that didn’t help us.

So my husband ended up choosing our house in Lobith. I was hardly involved with the paperwork, except where I had to be because we’re married. I was pretty sure I wasn’t going to live in this house for long anyway.

Similarly, my husband left all decision-making regarding the care facility I was going into up to me. Of course, this is in a way different, in that I’m a legal owner of our house and he’s not legally anything regarding the care facility.

I ended up moving to the care facility in Raalte just two days before we were to sign the contract on our house.

It’s indeed somewhat interesting that my husband and I leave each other so much room for decision-making regarding our own lives. Other married couples probably do much more shared decision-making. I don’t know whether it’s a good thing or not the way we do it. People have encouraged me to get more involved with the financial and legal aspects of the house. I’ve also been told my husband could (should?) be more involved with my care. But as long as we’re both competent adults, it works okay.

I’ve been thinking of making my mother-in-law my official decision-maker should that ever change in my case. I know my nearest relative would be my husband, but I want in any case to prevent my parents or sister from becoming my guardians. After all, I’m not too sure they truly would have my best interest in mind, though obviously they’d think they do.