Reasons I Think I Want to Stay in My Current Care Home

Posted on by Astrid

Last week, I was discussing my insecurity about living in my current care home with my assigned home staff. I still keep searching for another place to live, even though staff keep reassuring me that I don’t have to leave. Part of the reason for this is probably habit, in that I feel I ought to be looking for another place because that’s always been the case. However, my assigned staff also challenged me to write down a list of reasons I want to stay in my current care home and a list of reasons I may want to leave. Today, I’m going to share my list of reasons I think I want to stay. I’m pretty sure I won’t be sharing my list of reasons I may want to leave, as these are more like things I am hoping to find a solution to within my current care situation. Anyway, here are the reasons I probably want to stay in my current care home.

1. My one-on-one support. Of course, this is government-funded and may be transferable to another care facility, but I do like the fact that my current care team really think my care is important, in that staff shortages won’t easily mean my care will be cut.

2. The fact that I have gotten to know most of my staff. Of course, no-one can guarantee they’ll remain part of my team for the foreseeable future, but if I leave, the whole team will be new at least at first.

3. The fact that my staff help me with activities of daily living. This is a bit of an uncertain thing, as I sort of feel I ought to be able to do more of them independently.

4. The fact that I get day activities in the home and am the only one who does for now. Even though it may be possible to get day activities in my room at another care facility, I might not be the only one. I like the peace and quiet during the day as it is now.

5. The fact that fellow clients hardly make an appeal on me. Most leave me alone most of the time. This is a good thing, but I did put in my other list that I wish to interact with other clients somewhat more than I currently do.

6. My own room with my private bathroom, kitchenette and balcony. Thankfully, shared rooms are no longer in existence within disability services as far as I’m aware, but shared bathrooms definitely are.

7. The weighted blanket the care facility paid for me to sleep under. I mean, seriously, if I were to transfer to a different care agency, I’d lose that too.

8. The Internet access. Pretty much unrestricted, mind you. At least, I haven’t run into any sites that are blocked by the care facility’s WiFi. At least social media and games are allowed. I’m not particularly interested in anything adult content, so haven’t checked that. I can also use the Internet whenever I please, including at 3AM should I so desire (which I occasionally do). I am pretty sure some other care homes would be more restrictive about this.

Overall, looking over this list, I think that, while things aren’t perfect, my care home is pretty good. Actually, I am quite sure it’s pretty much the best I can get.

loopyloulaura

A Letter to Myself Five Years Ago

Posted on by Astrid

Today, I stumbled upon a journaling prompt that asked me to write a letter to myself five years ago. I’m pretty sure I’ve done something similar to this at least a couple of times before. In fact, when I searched this blog for letters, I saw that I’d written A letter explaining my life at the time in early 2020, a letter to my younger self in general in October of 2018 and even a letter from my (then) future self in 2019.

Those who know the timeline of my life, of course, will not be surprised that I am going to pick this prompt anyway, as the “five years ago” part of the prompt is particularly significant. After all, it was weeks before I’d be kicked out of the mental hospital. I am not going to bore you with a timeline of the past five years in this letter. Instead, I’m trying to provide some new insights.

Raalte, March 27, 2022

Dear Astrid,

It is tempting to start this letter with a cliché, such as, “How are you?” However, I know how you are. You are struggling greatly with self-doubt and uncertainty. Fear of abandonment and attachment loss. You’d rather avoid taking the next step in your life, leaving the familiar behind to step into unfamiliar territory. Even though you’d rather not admit it, your psychologist is right that you’re scared of needing to become independent.

I want to let you know I understand. Independence is scary. The unfamiliar, leaving the psychiatric institution to go live with your husband, is even scarier. I understand you’d rather stay with unsupportive people you know, ie. in the psych hospital, than live with a supportive person, ie. your husband, under circumstances you don’t know.

And, to be honest, if I had a choice back when I was you, I’d not have chosen to live with my husband. The thing is, you don’t have a choice. Not yet. But you will, at some point.

Please, for my sake, hold on for a bit. Do what your psychologist tells you, but also stand up for your right to proper day activities and community support. It will be hard, living in the community with your husband. But things will get easier.

I am writing from a care facility. In 2019, I was approved for long-term care based on blindness. I also have extra one-on-one support. Please don’t tell your psychologist all of this, as she’s going to time travel right ahead to me and make sure my funding gets taken away. This is just between you and me, so that you know things will improve. I know they will get worse first, but please do hold on.

Looking to you, I do see that you struggle to let go of the familiar, even when it isn’t good for you. I sometimes think I face the opposite issue, chasing perfection rather than being content with what I have now. It’s a true balancing act.

I also want to let you know that, as much as you’d like to make your own choices, being allowed to make those choices also can be a burden. The fact that, now, I am free to stay in the care facility for as long as I want or leave when I want, is quite scary, I must admit. In that sense, your psychologist was probably right about my dependent personality disorder features.

I wish I could tell you that your attachment issues would be over by now. They aren’t. I’m still struggling with them, worse even than I was when I was you. However, I do have a supportive mental health treatment team now,for which I’m forever grateful.

In summary, please do believe in yourself. You have every right to feel that you need more support than your psychologist says you need. You just won’t get it yet. Eventually though, you will.

With love,

Your future self

#WeekendCoffeeShare (January 14, 2022)

Posted on by Astrid

Hi everyone on this Friday afternoon. I’m joining #WeekendCoffeeShare. I just had a glass of water and am going to have another one in half an hour or so. Maybe I’m going to ask for a Senseo or treat myself to a Dubbelfrisss, my favorite soft drink. I’m afraid we don’t have the diet variety though. Can I pour you a drink? Let’s have a cup of something and let’s chat.

If we were having coffee, first I’d share that it’s not as cold as it was last week, but it’s still too cold for my liking. Daytime temps rose to about 7°C most of this week. I did go on one longer walk yesterday, to the supermarket to buy a card for my father. He’ll celebrate his 73rd birthday tomorrow. We also bought some veggies. Oh, and a croissant, because I felt like treating myself. I had just one for lunch instead of bread though. I just looked up how many calories are in one croissant and that’s about as much as in two slices of bread without toppings. Of course, bread contains less fat and sugar and more fiber, but so what?

If we were having coffee, I would go on to share about my dietitian’s appt this morning. It went pretty well. She didn’t admonish me for not wanting to lose the 13kg I need to lose to be at a healthy BMI. I do want to lose the 1.5kg I need to lose to no longer be obese though. More importantly, I want to eat relatively healthily and hopefully quiet the inner conflict about food.

The dietitian gave me some recommendations for healthy meal choices for breakfast and lunch. For example, she said I can have salad for lunch with croutons and a little chicken, tuna or salmon (that last one I don’t really like) occasionally rather than bread. I do need to make sure the staff take care of portion sizes, of course, because I’m pretty sure they’d otherwise throw the entire can of tuna into my salad. For breakfast, I am still allowed yoghurt with muesli, just not the crunchy kind. And thankfully, the muesli doesn’t need to be plain, it can include nuts or raisins or the like.

I did share my disappointment with her at only having lost 0.5kg over the past week when I stepped on the scale yesterday. The dietitian said that this is a pretty great result though.

If we were having coffee, lastly I would tell you I got my benefits payment slip last Monday and am grateful to report I will still get enough money that I can still spend some on fun things like polymer clay supplies or the like. I don’t know whether I shared this in my coffee share posts before, but my long-term care copay will automatically be withheld from my benefits. The copay is income-dependent and, because I’m married, my husband’s income is counted too. Then again, because I’m married, I do get to pay the so-called “low” copay because the government does take into account the responsibility I have for contributing to his household expenses too.

The copay is calculated based on our combined income from two years back, so 2020 for this year. Because my husband earned more money in 2020 than in 2019 and had a lot of tax deductibles in 2019, I was expecting a higher copay by at least €100 a month, but fearing it might be as much as €200 a month. Then again, I was hoping my benefits would also be raised a little. Long story short, my net income was cut by €82 a month. That’s a lot. I realize some people won’t be able to handle this, particularly people on benefits. I am so intensely grateful that I am relatively well off.

How have you been?

2021: The Year in Review

Posted on by Astrid

Each year at the end of the year, I look back at the past year and do a review. Today, I’m doing one for 2021.

At the beginning of the year, we were all cautiously optimistic about the vaccine being the ticket out of the coronavirus pandemic. It wasn’t. I got my first shot in early February and my second shot a month later. In early December, I had my (first) booster shot. I’m pretty sure more are still to come.

At the end of 2020, I first had my one-on-one support approved. It took some time to figure out how the staff should best fill in the allocated hours. Initially, the manager wanted my husband to be clear on when he was going to have me home with him, so that my one-on-one hours could be canceled then. This wasn’t doable for my husband or me, so finally it was agreed that my hours would be filled in regardless.

For most of 2021, we had day activities at the home due to the pandemic. Thankfully, by September, the day center opened and the clients were mostly back to their pre-pandemic groups. I, however, was not. Thanks to my one-on-one, I was provided day activities in the home and this continues to be the case so far. There has been talk of me starting in a small group, but this isn’t doable for me right now or within the foreseeable future.

For the first half of the year, I struggled a lot with the battle inside my head between wanting to live more independently and wanting even more support. This led to a climax in mid-June, when the manager told me that more support is really not possible. I was in a crisis for about two weeks. Then I started my new medication, topiramate, which calmed some of the inner conflict. It, of course, helped that I was reassured that, regardless of my attempts to push staff away, I was going to keep my allocated one-on-one support hours at least until the end of December. And of course now they have been approved until December 2023.

Over the summer, when my topiramate started to kick in, I was able to be more creative than I’d been in a long while. I started polymer clay once again and have been able to enjoy this hobby ever since. Like I mentioned when I wrote down my hopes for 2021, I didn’t intend on doing it all independently and that’s still not one of my hopes.

Looking back at my hopes, I did pretty well on them for this year. See, I think it helps that I don’t call them resolutions or goals, ha.

Overall, this year was a pretty good one for me personally. Even in terms of COVID, it’s been as good as possible, in that I haven’t contracted the virus and neither has anyone else in my home. One of my staff tested positive recently and originally we were supposed to all get tested today. After conferring with the care agency’s pandemic team, this got canceled though. I may still get a lateral flow test later today just to be sure. Let’s hope I won’t end the year with COVID.

How has your 2021 been?

This Is “Profound Autism”?: Reframing the Discussion Around Complex Care Needs

Posted on by Astrid

A few days ago, there was a discussion on the Autism Science Foundation’s Facebook page in which parents of autistic adults with complex care needs were describing their children with the hasthag #ThisIsProfoundAutism. I asked to reframe the discussion to include people with multiple disabilities including autism in general, because it is rarely (but not never!) autism, no matter how severe, alone that causes a person to be completely dependent on caretakers. I then explained that due to the combination of my disabilities, I need 24-hour care, including one-on-one for most of the day.

Not surprisingly, I was quickly met with the question whether I was saying I needed 24-hour help with basic tasks such as eating, bathing, dressing myself, etc. Well, the Autism Science Foundation page is a public Facebook page and I didn’t want the people on my friends list (including immediate family) who don’t know this, to judge me for it, but the short answer is yes. While I, like presumably most “profoundly autistic” people who don’t have physical disabilities, am physically capable of eating and dressing myself for the most part with some difficulty, my executive dysfunction means I still need help with them. As for bathing, well, I basically need someone to wash me, because, while I can physically hold a washcloth in my hand, I don’t have the organizational skills to actually work out the ritual without a ton of supervision and even then it’d lead to a lot of meltdowns.

I did, incidentally, point out that I recognize intellectual disability as a valid additional disability that needs to be taken into account when I asked to reframe the discussion. After all, that’s most likely what’s causing these autistic adults to be unable to understand instruction and to be completely dependent. For me, it’s a combination of executive dysfunction, which is a direct autism symptom, blindness, mild cerebral palsy, and other things.

I also do recognize that the need for support with severe challenging behavior is not the same as the need for help with basic personal care. One does not exclude or necessarily include the other and one is not more valid than the other. I, for one, am somewhat more independent in terms of eating, dressing and bathing than my severely intellectually disabled fellow clients. I am a lot more dependent where it comes to the effects of my challenging behavior.

I also do not mean to say that autism on its own cannot possibly cause a person to need a lot of care. It can. I am reminded of a girl I read about on Dutch social media many years ago, who indeed had hardly any functional communication skills but did have an IQ above 85. She, unlike me, didn’t have any additional disabilities. She was completely left behind in the care system: she was too severely disabled for traditional child and adolescent mental health services, but her IQ was too high for intellectual disability services. Really, I should not have called for reframing the discussion to include those with multiple disabilities, but those with complex care needs in general.

That being said, I strongly disagree with those people who say that just because I can write, means I should have ignored the conversation, since it clearly wasn’t meant for me. The fact that I can write, does not make me not dependent on care providers and does not mean policy or lack thereof won’t affect me. I am autistic and that, along with my blindness and other disabilities, causes me to need the extensive care I get now.

Final Goodbyes

Posted on by Astrid

Yesterday, the fellow client who passed away was temporarily moved from the morgue into her room in the care home. I went to have a quick look yesterday evening. This morning, since I had finished my polymer clay butterfly and flower, I went back into her room and set them at her remembrance table next to her coffin. My assigned home staff was with me and asked me whether I wanted to touch her coffin, the things she had with her and even her hand. I did. Her hand was cold, which was the final reminder I needed that she’s really dead.

This afternoon, we went back into her room to pick a rose from her remembrance bouquet. We then went outside and stood in a circle with all other clients and staff who were close to this client and the family. Everyone laid a rose on the coffin. The client’s brother and our support coordinator spoke a few words and then the coffin was put into the funeral car and driven away. My assigned staff cried a few tears. I did feel sad too, but I couldn’t cry.

This is the first time I’ve ever been this close to a deceased person. I mean literally, as in touching her hand. When my maternal grandfather had died in 1995, I did pay him a quick visit at the funeral center, but was only able to have a quick look and with how little vision I had back then, I probably could hardly make out what he looked like. With my other grandparents, I didn’t ever get to see them while in their coffins. I had originally thought I wouldn’t benefit from visiting this client in her room because I couldn’t see her, but I actually did benefit. I was able to say my final goodbyes. Now I know she’s really gone.

Written for E.M.’s Random Word Prompt #7: “Remembrance”.

A Few Really Intense Days

Posted on by Astrid

Last Thursday was a weird day. I had to have my mammogram at 11:45AM at the hospital in the nearest city, which is half an hour’s drive away. We arrived about fifteen minutes early, which was good, since I still needed to get an ID label. Normally, the hospital give you an ID card with your first visit, but the receptionist said I should already have one since my ID was in their system. It probably was from when I had my abdominal X-ray at the outpatient clinic here in town, where apparently they don’t do ID cards. Oh well, he printed off a label and sent me on my way.

The mammogram people were running a bit late, so I got a little stressed. As it turned out, the person doing my mammogram was also a guy, which made me feel slightly uncomfortable. I tried to reassure myself that it’s his job. The mammogram was painful but thankfully it was over with quickly and I knew that it being painful said nothing about possible results.

In the evening, a male I initially didn’t recognize was in the care home. As it turned out, he was our GP. I was already distresssed from my schedule going to pieces due to the mammogram. It was getting even worse, because it turned out a fellow client had to go to the hospital. She had Down Syndrome with severe heart complications and the doctor suspected her heart was acting up again.

Later, it turned out she had RSV, a type of pneumonia that normally only affects babies and small children. She was tested for COVID too but was negative. As she was moved from cardiac care to the lung unit, she seemed to improve over Friday and Saturday, but wouldn’t be discharged until Monday as there are no doctors to do that over the weekend.

Thursday night, I myself started experiencing nausea and bad stomach pain and could hardly sleep. I vomited a few times in the morning, then was exhausted and lay in bed most of the late morning and early afternoon Friday. Thankfully, by Saturday, most of my symptoms were gone.

Then on Sunday morning, I got the news that the fellow client who’d gone into hospital Thursday evening, had passed away after all. My first thought was: “This won’t affect staffing, will it?” I quickly silenced those thoughts, knowing they are selfish. When the manager came by to support the staff, she did pay a quick visit to my room though and I asked her whether the vacant room would be filled quickly now. She reassured me that the staff and clients will have time to process this loss first.

I have been busy all of yesterday evening and today thinking about how to make something for the client out of polymer clay to go with her to the funeral. Yesterday, I initially made a butterfly using a mold, but I did it all wrong and it turned out rather rubbish. Then I decided to create a multicolor flower. However, one of the staff who knows the family’s wishes about the funeral etc., told me a butterfly would be especially fitting. So I stressed all day about how to make a butterfly using my rather inflexible mold. I might’ve found a way. My nurse practitioner, with whom I had an appointment this morning, did reassure me that I am well-intentioned regardless and that’s what matters.

This afternoon, I got the results of the mammogram. Thankfully, there are no abnormalities! At least that’s something to be happy about.

Reclaiming November

Posted on by Astrid

Tomorrow is November 1. November is the hardest month of the year, since it is the month in which I ended in crisis in 2007.

Thirteen years later, it was also the month in which I finally broke down and admitted I needed more support than just the care facility’s group home support. On November 8 of last year, I broke down when a staff (the same staff who is now my assigned home staff) asked me to either calm down or go to my room when I was acting irritated at the other clients’ noises. My reaction wasn’t pretty: I hit the staff, screamed I hated her and cried out that indeed, as I’d been saying all along, if I showed who I truly was, she’d abandon me. She didn’t.

During the days that followed, I experienced significant dysregulation, including some near-psychotic symptoms and a lot of sadness. One day, I was crying my eyes out in my room when another staff came in and said she was going to spend her entire two-hour shift with me. We talked and she asked me whether I’d ever heard of one-on-one support. I had, but asked her to elaborate anyway. She did and asked me whether I wanted that. “Yes,” I said. The next day, the staff I’d hit and my then assigned home staff made the paperwork in order, because I had to sign a letter to the manager formally asking for more support. By mid-November, the wheels were set in motion for me to get one-on-one support and my one-on-one was pretty soon effectively started.

Now, as we’re approaching another November, I’m reclaiming the month. I don’t want this to be the month I landed in crisis so many years ago for the rest of my life. Instead, I want it to be the month I chose to get the support I need. I am choosing to stand up for myself, not just because crisis states force me, but because I have a right to do so.

Joining My Vivid Blog’s prompt: “Tomorrow”.

Gratitude List (October 29, 2021) #TToT

Posted on by Astrid

Hi everyone on this Friday evening. I’m doing a gratitude list again today. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful my abdominal X-ray came back all normal. There’s no constipation or excess gas. Of course, this does mean we still don’t have answers as to what is causing my abdominal discomfort and how to deal with it. I have another appt with the GP to discuss further steps.

2. I am grateful my staff, the one who was on sick leave, is slowly returning to work. She came by for a quick visit yesterday.

3. I am grateful for nice weather. Most of the week, the temperature’s been above-average for this time of year, with today it going as high as 17°C. It’s been pretty clear and sunny with no rain too. The weekend is supposed to be different, but oh well, that’s okay.

4. I am grateful for interesting conversations. I’ve been exploring the enneagram again and engaged both my husband and several staff in discussions about it. I got one staff to take a test and, assuming the test typed her right, so did I.

5. I am grateful my creativity seems to slowly be returning. I’m not yet actually creating anything, but I’m exploring polymer clay again. One of my staff is going to bring me some supplies for creating something she saw online or in a book tomorrow and I’m really looking forward to it.

6. I am grateful I had the guts to finally press the “report a problem” button on one of my most recent PayPal purchases. I spent €90 on what looks in theory like pretty amazing software. Turns out though that the license information I was given doesn’t work. I tried to contact the vendor via their website but got an “undelivered” E-mail response. I saw that their PayPal contact info was different, so before proceeding to actually report the problem to PayPal, I decided to try one more time to contact them via that E-mail address. Fingers crossed this will work.

7. I am grateful for yet more newly-discovered essential oil blends. I still haven’t bought more oils in part due to said €90 I might’ve thrown down the drain, but I love learning new ways I can use the oils I do have on hand. I currently have a blend of cinnamon, ginger and ylang ylang in my diffuser.

8. I am grateful for salad again. My day activities staff and I made this for lunch (well, she did the actual making) on Wednesday and there was still some left on Thursday.

9. I am grateful for all the sensory equipment I have right here in my room. On a Messenger chat, we were discussing ways to cope with anxiety and I mentioned my essential oil diffuser, weighted blanket and music pillow. These things make me so privileged.

10. I am grateful I am safe in the care facility. I find it hard to say this, but it’s true.

What are you grateful for?

The Best Decision of My Life

Posted on by Astrid

I really want to write, but, as usual when I’m like this, so much is spinning through my mind that I cannot ultimately get anything out of my fingertips. To get myself started, I decided to look at the book Journaling with Lisa Shea and picked one of the journaling prompts on gratitude. It asks us what the best decision of our life was. Was it an easy decision or a hard one? I’m pretty sure I already covered this topic several years ago, but the answer may be different now.

After all, up till quite recently, I would have said the best decision I ever made was to consent to being admitted to the psychiatric hospital in 2007. That, after all, set in motion the wwheels that ultimately got me into the care system. However, looking back, I could just as easily have selected my choice to go to the blindness rehabilitation center in 2005 rather than to university. After all, that was what led me to the training home and to my autism diagnosis.

I honestly don’t want to give the psychiatric hospital people, particularly my last treatment team, the credit they get if I say that getting admitted was my best decision ever. After all, like I have said before, I didn’t make much progress in those 9 1/2 years in the hospital. Worse yet, the only difference between my care arrangement before the hospital and after it, was that my husband was now in my life. My husband deserves the kudos for that, not any mental health professional.

Instead, the best decision I ever made, I made rather offhandly on September 20, 2018. This was the decision to allow my support coordinator to schedule an appointment with her regional care consultant on getting me into long-term care. The appointment itself took place on October 4.

I say I made the decision rather offhandly, in that we were discussingn living options and I eventually said, sort of half-heartedly: “Okay, you can ask your care consultant to come.” In truth, the decision was a really hard one.

Even though I had planned on going into supported housing ever since my initial psych hospital admission in 2007, it felt kind of like I was betraying my husband, my parents, my former treatment team and everyone else by admitting this is what I needed. For this reason, my husband’s first words when I said my support coordinator had scheduled the appt with her care consultant, were very comforting: “You know I support you, right?”