Starting My Journey Towards (Hopefully) Going Into Long-Term Care

Last Sunday, my husband asked me whether I had any interesting events this week. I said no, I would just go to day activities and that’s it. Last week, the consultant psychologist on my case called the long-term care funding agency to ask how far they are with processing my application. It’d been sitting with them since Dec 20 and they formally need to finish the process within six to eight weeks. They said it’s on the roll, but that they’d been busy because of the holidays.

Last Thursday, my support coordinator asked whether I wanted to start looking at group homes now while we’re waiting for the funding to hopefully be approved. She had a particular group home in mind which has had an available room for months. I said okay.

She called the group home’s manager and was told I’m welcome to take a tour but to contact the home’s coordinator. Well, to make a long story short, I was invited to the tour yesterday.

This is a home for people with profound intellectual and multiple disabilities. The manager stressed that the current residents all function at a mental age of six months or so. Now I find the whole concept of mental age confusing, probably because I myself function much higher intellectually than emotionally. I mean, obviously I assumed these people can’t talk, but well. I don’t mind.

I drove by paratransit taxi to the home yesterday. It is in a city about 30 minutes from my home. I was told to ring the doorbell if I could find it and else to wait for my support coordinator to arrive. From the need to ring the doorbell, I assumed it’s a locked home. It is. I had already read up on it though and had read that the home has a fenced yard. Otherwise, I wouldn’t have liked a locked place. Like, there’s one my support coordinator has mentioned too in the city my day activities is in too, but that’s on the third floor of a nursing home building. I’d feel like I was in a prison then.

I asked the home’s coordinator why this is a locked home, since I assumed all residents are in wheelchairs. Turns out some can walk and may elope. So do I when in a meltdown.

We started the tour in one of the two living rooms. It had a lovely sensory atmosphere. The coordinator asked, since I arrived shortly past noon, whether I’d had lunch. I hadn’t, so she offered me a slice of bread. I liked that.

Once my support coordinator arrived, we talked about my care needs. I function emotionally at a really low level, which is why my support coordinator had believed this place might be for me. The home’s coordinator understood and liked the opportunity to get to know me.

In the home, you have your own bedroom. You share the bathroom with one other resident. Since most clients use diapers, not all bathrooms have a toilet, but the one adjacent to the available room does. Then there’s a large sensory bathroom with a tub. I loved it. They also have sensory materials to use in the living room or an individual resident’s room.

I didn’t get to tour the yard, but was told there are lots of swings in it, including a cocoon swing like the one I love at day activities. They also have one they can use indoors in the living room.

As for the rules, there are no strict visiting hours. Family are actively involved in the residents’ life. They also have volunteers who go for walks with the residents almost each evening. Sometimes, volunteers cook for the residents. When they don’t, the residents get readymade meals like the ones I got in the mental institution. Once a week, a music therapist comes to the home. It’s a facility which offers treatment, so you get the opportunity for physical, occupational or speech therapy if needed. There’s also an intellectual disability physician and a psychologist involved.

During the night, a staff sleeps in an upstairs room. All residents’ bedrooms are downstairs and there’s no need to go upstairs to find the night staff. Rather, they use technology to listen for suspicious noises in the bedrooms, but the coordinator did say this could be turned off in my bedroom if I were able to phone the night staff myself.

If I get funding for long-term care, it needs to be tweaked somehow if I want to live at this place, because my funding would be based on blindness and this is an intellectual disability facility. Then, the manager, physician, psychologist and all need to agree that I’m the right fit. This includes a risk assessment. The coordinator says this is in case of things like severe epilepsy, but my husband told me to mention elopement.

Of course, I feel internally conflicted as to whether I want this to work out. I’m excited about the facility itself, but still feel like I shouldn’t need this much care. I’m afraid the funding authority is going to agree here.

Once I’d returned home, my support coordinator called me. She had heard from the funding authority physician. The consultant psychologist had already explained my needs, but she wants to see me anyway. That appt is going to be tomorrow at 10AM. I assume this is to validate I in fact have the needs the application says I do. Then, the physician will write a report for the funding decision-maker, I guess.

My support coordinator is going on vacation on Feb 7 and won’t be back till the 25th. She said though that, if my funding gets approved while she’s on vacation and I want to start the process of applying at this living facility, I can do so with the care consultant and my support worker.

PoCoLo

Determined

I want to write so bad, but my shoulder is still hurting. Not as badly as it was, but there’s some kind of bulge on it that keeps acting up whenever I lift my arm up even slightly, as I do for typing. I am determined to beat this stupid thing though.

Determined. That’s Fandango’s word for FOWC today. I rarely participate in these one-word challenges, although I’m subscribed to most blogs that offer them, including Fandango’s. However, today’s word struck a chord.

I told my named support worker at day activities about my crisis of 2007. I realize I’ve never shared my life story on here yet, so some readers will not know what I’m talking about. Let me explain. In 2007, I was living independently and going to university. I had been forced to go that route after essentially being kicked out of an independence training home that I had attended because I’m blind. I had been diagnosed with autism just a few months prior. Neither autism nor blindness alone should keep someone from living independently and going to university, but the combination did cause me a lot of trouble. Within three months, I was in a suicidal crisis. I had to be admitted to the psych ward. Not because I wanted to per se, but because that was what I needed at that point.

Fast forward 9 1/2 years and I was kicked out of the psych unit again. Yes, I stayed in a psychiatric hospital for 9 1/2 years. Not because I wanted to, but because no other place wanted me. Those for people with just autism, couldn’t deal with my blindness and vice versa. There are places for people who are blind with multiple disabilities, but most of the clients going there have some type of intellectual disability. That was obviously not where I belong. Or was it?

I’ve now been living independently with my husband since May of 2017. Despite lots of support, it’s a struggle. I am surviving, but I’m barely living.

So I decided to apply for long-term care. Which had originally been determined to be best for me by the psychiatrist who admitted me to hospital in 2007. I am determineed that, if we stop looking at just my labels and start looking at me, we’ll find someplace for me.

Then again, is this determination? Am I not essentially underachieving if I admit I need 24-hour care? Or am I actually determined to follow my own path to happiness and the best possible quality of life?

Book Review: And She Was by Jessica Verdi

Man, #JusJoJan is getting nowhere. That is, I’ve been jotting stuff down everyday, but none of it was blog-worthy. I felt a little uninspired. Then, reading a book seemed more interesting than writing a blog post. I chose the book called And She Was by Jessica Verdi. Then, once I finished the book, I wanted to write a review for my blog, but didn’t get round to doing it. Then on Thursday, I fell and suffered a small but painful collarbone fracture. Now it’s Monday and typing with that hand still hurts like crazy, but I so badly want to finally write the review. Here goes.

Synopsis

Dara’s lived a sheltered life with her single mom, Mellie. Now, at eighteen, she’s dreaming of more. When Dara digs up her never-before-seen birth certificate, her world implodes. Why are two strangers listed as her parents?

Dara confronts her mother, and is stunned by what she learns: Mellie is transgender. The unfamiliar name listed under “father”? That’s Mellie. She transitioned when Dara was a baby, after Dara’s birth mother died. She changed her name, started over.

But Dara still has more questions than answers. Reeling, she sets off on an impromptu road trip with her best guy friend, Sam, in tow. She is determined to find the extended family she’s never even met. What she does discover — and what her mother reveals, piece by piece, over emails — will challenge and change Dara more than she can imagine.

This is a gorgeous, timely, and essential novel about the importance of being our true selves. The backmatter includes an author’s note and resources for readers.

My Review

I already started reading this book a month or two ago. It felt a little slow-moving at first. However, once I picked up the book where I left off again last week, it was really good.

At the beginning of the book, you get to empathize mostly with Dara. This may be one reason people consider the book transphobic, since Dara first decides that her mother’s transition is selfish. Throufh Mellie’s E-mails to her though, you get to understand her perspective too. It takes a long time for Dara to understand Mellie’s point of view and, as such, it takes the reader some time too.

All characters in the book are really well-developed. With some, like the Pembrokes – the grandparents Dara meets -, I got an uneasy inkling of what was coming when they were first introduced. Still, their character was really well-painted.

Some people have pointed out that Mellie is constantly misgendered by the Pembrokes and some others. They feel this is negative. It is, of course, but it serves to illustrate these people’s character. Nowhere is the misgendering condoned by Dara.

There weren’t many truly surprising twists and turns in the book, but the plot wasn’t predictable either. Overall, I liked it. I got stuck on some details, like how could a trans person change their legal name without bottom surgery (this is not possible here), but I assume Verdi did her research.

Overall, I really liked the book. I am cisgender, so cannot say for sure whether this book isn’t transphobic. However, even though some characters are, this is probably real life for trans people everyday, sad as it may be.

Book Details

Title: And She Was
Author: Jessica Verdi
Publisher: Scholastic Inc.
Publication Date: March 27, 2018

Gratitude List (January 18, 2019) #TToT

This week is truly not the best one and that’s a huge understatement. I felt a little lost early in the week. I tried to exercise in order to make myself feel better. This was somewhat of a success. Then yesterday I fell and suffered a small fracture in my left collarbone. Nonetheless, I am going to attempt a short gratitude list. As always, I’m linking up with #TToT.

1. Swimming on Tuesday. It was the first time in six weeks that I went swimming again. I was a little panicked at first, but it went well eventually.

2. My mother-in-law. On Wednesday, my support coordinator had to cancel her visit to me at the last minute, but thankfully, my mother-in-law could pick me up. I had fun eating with my in-laws and my MIL’s niece, who temporarily lives with them.

3. My support staff. My support coordinator was kind enough to call me back as soon as she could to explain why she had to cancel our appt. She offered to come by two times next week.

Also, like I said, I fell yesterday. I was very dizzy from the pain at first. Nonetheless, I thought little of it. After an hour though, I was still in a lot of pain, so decided to call the doctor’s office. His assistant advised me to come see the doctor, but the GP surgery is in the next town, so I needed transportation. My mother-in-law couldn’t leave home and advised me to call a taxi. I didn’t know how to do that, so called my support worker, who jumped in the car and drove to me. She went to the doctor with me.

4. Painkillers. It turned out I had a small collarbone fracture. It wasn’t so bad that I needed a sling or whatever, but the doctor did give me strong painkillers. This was a little hard to figure out, since I take a lot of other medications with which pain meds might interact. I just took my third dose of the pain medicine about two hours ago, since I can only take it twice a day. I’m still in some pain, but it is bearable if I don’t put too much pressure on my arm. This does mean typing with my left hand for a long while, such as typing up this blog post, is a struggle.

5. Candy. I treated myself to candy today. I ate it all already. We also had French fries again. Now I am stuffed. However, it felt good indulging into some comfort food.

6. Reading. I was very much into reading some fiction again early this week. I usually read non-fiction, but enjoy young adult fiction at times. I had started reading the book I finished this week already a few months ago, but somehow moved through it quickly now. It is called And She Was by Jessica Verdi. I have made a start to a review, which I will publish soon.

What have you been grateful for?

Sorry Not Sorry

Today I am not sorry I suffer with mental health issues. I didn’t choose them, no matter what some people think. I don’t necessarily have a bad attitude – and when I do, it has nothing to do with my mental illnesses.

Today, I”m not sorry I am a trauma survivor. I didn’t choose to endure the traumas I endured. These traumas and the resulting mental health symptoms do not make me weak. They do not make me not resilient. People can be resilient and suffer from mental health issues or trauma-related symptoms nonetheless.

Some people choose to believe that the fact that I don’t live up to my intellectual potential, means I’m not resilient. They reason that, if I were persistent enough, I would have finished university and had a job by now. They also judge my lack of persistence in these areas as a sign of a bad attitude.

Today, I’m not sorry I live with multiple disabilities. I don’t care whether you consider these disabilities valid or not. The people who judge me, think I use my disabilities as an excuse not to fulfill their expectations of me. They don’t realize that it’s my life and I have absolutely zero obligation to fulfill their dreams for me. No, not even when these people are my parents. I have no obligation to prove I am worthy of life.

People who don’t know me well commonly assume I must be very resilient for the mere fact that I’m alive. I didn’t use to like this attitude either, but then I read today’s post by carol anne, which inspired this post. Both of us were born prematurely. Both of us suffer with lifelong disabilities as a result. Both of us endured childhood trauma. Doesn’t the fact that we survived and haven’t succumbed, mean we’re pretty resilient? I think it does. We’re badass!

Loss #WotW

This was truly a mixed week. I wanted to write a gratitude list for it, and maybe I will do so tonight, but right now I don’t feel like it.

On Monday, I attended day activities as usual. A fellow client, an older man, attended too as usual, but he was very unwell. He had been ill for a long time and the staff had feared for his life on a few prior occasions. I attended day activities during the morning only and I worried in the afternoon that he’d die soon.

On Tuesday, the man wasn’t at day activities. I heard the staff talk about his group home staff having had a scare in the morning, but he was still alive. In the afternoon, I heard them talking about palliative care. By late afternoon, when us clients werre ready to leave, I heard that he’d passed. For those who don’t know, my day activities group is for people with severe intellectual disabilities, so i’m the only one who understands the conversations staff have among themselves basically.

On Wednesday, the other clients were told that this man had died. Most still don’t fully understand, but some have made beautiful drawings in his memory that will be given to his family on Monday. Near the center’s front door is a table with (electric) candles, a picture of the man and all the drawings. I decided to make a butterfly soap for it. I made it on Wednesday afternoon with my support coordinator. It turned out great, a beautiful lavender blue with lavender fragrance oil.

On Thursday, I was off from day activities and I spent the morning in bed. It didn’t really feel good, but I had nothing planned for the day except for horseback riding at 4:30PM. That was a great experience. I rode Aagje, a fjord horse with long hair (which is unusual for this breed).

Today, I showed my day activities staff the butterfly soap I’d made and placed it on the client’s remembrance table. We tried to do day activities as usual as much as possible. We walked to the marketplace in the morning. In the afternoon, when I went for a short walk with the day activities coordinator, I told her I wanted to ask a rude question. I wanted to ask whether, now that this other client had died, I could take his place at day activities on Thursdays. I still feel pretty awkward having asked this, but she understood that, if I waited a while, they might’ve gotten a new application. I E-mailed my support coordinator on this issue too.

Early this week, I got an E-mail from my support coordinator forwarding the termination letter from the Center for Consultation and Expertise. I didn’t understand this, as the consultant had offered to be my contact for the long-term care funding agency. Apparently, she still is somehow. I really hope I hear from that agency soon. My support coordinator did E-mail the local authority’s social consultant, who is in charge of my community care funding, to extend my funding for two months as we wait for long-term care to kick in.

Right now I feel… numb? I was a bit dissociated this afternoon, as my day activities staff were discusing clients’ severe challenging behaviors (not current fellow clients of mine). I remembered my time on the locked psychiatric unit, where I was often threatened with seclusion for problem behaviors and was in fact secluded or restrained a few times. It felt good disclosing this to my staff, but I did feel a bit awkward.

Now I’m waiting for my husband to get home from work. He’s going to bring French fries and snacks. I look forward to that.

I am linking up with Word of the Week. I choose “loss” as my word of the week in my fellow client’s memory.

My 2019 Word of the Year

It feels like forever since I last wrote, even though that was only last Friday. I don’t know whether that’s a good thing or a bad thing. I’ve been wanting to write a lot over the week-end and did in fact write some each day. Just not for my blog. Today, I am going to write a post I’ve been dreading writing, like each year. It is the post in which I announce my word for the year.

Now why is that so dreadful? Because I have a lot of trouble, and that seems to increase each year, choosing a word of the year. I feel like I need to focus on my word of the year, but then again that doesn’t seem to work. I mean, if life is a bunch of choices, focusing on my word for the year should make it happen. That just isn’t how it works, and I’m still undecided as to whether that’s because I’ve not focused on my word for the year enough or because of things outside of my control.

As such, this year, I am going to decide on a word that should be relatively easy to focus on. It shouldn’t be like a heavy weight on my shoulder, like “progress” or “be” were when I chose those words in previous years.

With no further ado, here’s my word for the year 2019: CHERISH.

The word “cherish” was suggested to me by someone in a trauma self-help group. I had wanted to choose words like “self-care” or “nurture”, except that I’d already had those as words of the year previously.

In the year 2019, I want to cherish myself. This means, according to the dictionary, to hold dear, to show loving affection. I want to be kind and loving towards myself. It also means something akin to “hold onto”. In this respect, I want to hold onto life. Because of that, I hope this year I won’t be acting too impulsively.

I also want to cherish the people who are important to me, most notably my husband. In the process of applying for long-term care, it’s sometimes felt as though I was abandoning him. That isn’t my intention. I want to remain with my husband for life. As such, if and when I go into supported housing, I want to make the most out of the time I’m going to spend with my husband. Until this happens, I’ll also hopefully be able to show lots of affection towards him.

What is your word of the year?

Gratitude List (January 4, 2019) #TToT

Yay, it’s time for my gratitude list with #TToT once again. I am also linking up with the Word of the Day Challenge, for which the prompt is “gratitude” today. Do you want to know what I’ve been grateful for lately? I love to share!

1. Two wonderful full days at day activities between Christmas and New Year’s. There were only about five clients there each day and two staff. On Thursday, I went for a walk with one of the staff. We also ate pancakes for lunch. On Friday, the staff drove the center’s van to a restaurant in a nearby village, where we had a drink. I had hot chocolate with whipped cream. One of the clients from my group, an older man who used to drink beers with his friends regularly before he declined from a brain injury, had an alcohol-free beer. I could tell he thoroughly enjoyed the experience. So did I.

2. Resting over the week-end. I was pretty tired from all the Christmassy stuff by last week Saturday. So was my husband, so we chose to have a lie-in. I normally feel bad about getting up at like noon and my husband doesn’t like it either, but neither of us minded.

3. Oil balls or whatever the English term is. These are fried balls made of the same stuff that pancakes are made of. They’re a traditional New Year’s snack here. I was nauseated from them for days, but who cares?

4. Not having gained any weight over the holiday season. That is, I may’ve lost then gained some or vice versa, but in any case I was at the exact same weight last Monday that I’d been in early November. I already mentioned this last Monday, but I’m still so grateful for it.

5. A long walk with my mother-in-law. On Wednesday, she visited me and we went for a walk into the next village. This was about a 5km walk that took us 70 minutes.

6. Horseback riding with my support worker. Yesterday, for the first time in a while, my support worker was available to assist me as I rode the horse. It was truly a lovely trip. While waiting on the taxi back home, a young man from my day activities came into the canteen. Once she’d made out that we knew each other, his staff prompted him: “Who’s that?” I was delighted to hear him say “Astrid!” I only see this man on one of my days at day activities and I hadn’t expected him to recognize me, so it was truly lovely that he did.

7. Fried chicken. Yesterday, my husband cooked a rather boring meal of macaroni with bell peppers and leek. He surprised me at the end by saying that, if I admitted this was the most delicious meal I’d ever had, he might have some chicken for me. So funny! We had wings and filet. I liked the filet better, so my husband gave that to me.

8. Getting a head massage. We havve a head massager at day activities. I love it and today, my staff were doing beauty stuff. I asked for the head massage first, but I also had my nails done.

9. Looking at an online store for sensory supplies with my staff. I already knew the store and have my sensory cat from there, but my staff hadn’t heard of it. They probably got the sensory room modeled by Barry Emons, the inventor of snoezelen, but his shop is harder to use and the itmes are more expensive than the store I found. I was totally excited ooohing and aaahing at all the lovely supplies and all the more excited because my staff was excited too. We might get some stuff for my day activities group.

10. Dancing. On Friday afternoon, one of the staff at another day activities group organizes a “prom” for the entire center. I only went once before, but today, I decided to go again. I loved it.

11. Eating French fries for the first time in a while. Today, my husband heard a doctor on the radio say that you need to go to the snack conrer once in a while or you’ll get fat, or so he said. The real talk was probably about crash diets not working, but I loved my husband twisting it to an excuse to get us fries. We also each had a burger with it.

12. The lovely blog interaction I’ve been involved with this past week. I’ve gotten more interested in reading and responding to other blogs and it probably pays off on my own blog too. Besides, I just love reading other blogs, as it inspires me too.

What have you been grateful for this past week?

Blogging

I am once again joining in with #JusJoJan. Yesterday I did write, of course, but I didn’t link up, since my post wasn’t for the prompt. Today’s prompt is to share about your blogging endeavors. Why did you start blogging? How did you come up with your theme? How has blogging affected your life? And so on.

I probably shared this on my older blogs a couple of times already, but I don’t think I jotted about my blogging on here. I was probably destined to be a blogger, as even as a young teen in the late 1990s, I longed for someone to read what I’d written. Not my parents, of course, but I was pretty open about my writing otherwise. My father at one point joked that I showed my new best friend my diary the first time she visited me. I didn’t, but I did show her some personal writings of mine. Those got her to feel pity for me. The friendship wasn’t healthy to begin with, as I was needy and clingy. The friendship ended not even half a year later. Today, I won’t go into that. It only serves to prove that I was very open in my writing from an early age on.

I got a computer with Internet access in May of 2002, when I was fifteen. Within six months of that, I’d started an online diary. The contents of that diary, unlike those of many of my later attempts at keeping a blog, are still available online. Their original location, on DiaryLand, might even still exist.

In February of 2007, I created my WordPress account and moved the contents of my diary to my first legitimate blog. This diary had over the years started to contain some more essay-like posts besides the diary-style navel-gazing. However, with DiaryLand, there was no way of organizing your posts by categories or tags. My parents criticized me for being too personal in my diary. I didn’t intend on becoming less so, but now I could put all my navel-gazing into a category called “Personal” for people to skip.

I have had three blogs (if I include this one) that were lasting. First, I had said blog moved from DiaryLand. Then I had Blogging Astrid, which I originally intended to keep alongside this blog. That didn’t work.

A Multitude of Musings, the blog you are now reading, is, in fact, a restart of another relatively long-lasting blog I wrote in 2011. I am a bit sad that I deleted its content years ago, but I can’t undo that. Still, my stats say the day I had the most views was in 2011.

Blogging has had a huge impact on my life. My husband checked out my blog – the one that had been moved from DiaryLand – before he asked to meet me in real life. This meant he already knew me pretty well before we’d first met. In this sense, my marriage makes up for the friendship I wrote about above, as my husband chooses to stick by me despite my openness. I don’t encourage him to read my blog now, but if he wants to, he can. He’s occasionally been cross with me for sharing something about him. I try only to share the positive now.

Why did you decide to start blogging? How has blogging impacted your life?

#IWSG: Am I a Writer?

About three years ago, I told my then day activities staff that the number one item on my bucket list would be to write my autobiography. I have said I want to be a writer too many times. Now of course I am a blogger, and my blog posts consist exclusively of words, but does that count?

To kick myself in the butt a bit, I am joining in with the Insecure Writer’s Support Group (IWSG). This is a group of (aspiring) writers who encourage each other via monthly blog hops, a Facebook group and more. I’m still not sure I belong there, as I don’t even know whether I still intend on ever publishing that autobiography, even if I get to write it. I am not sure I’m good enough to publish anything. Of course, I already got a piece published in an anthology in 2015, but does that really count? Besides, it was non-fiction and I’m still unsure whether the IWSG is intended for fiction writers only. Given that my biggest supporter in life, my husband, says my fiction is rather unimaginative, I don’t think I’ll ever attempt my hand at that again, even though sometimes I want to. Insecure I am, at least. The question is whether I’m a writer.

One of the ideas of the IWSG blog hop is to answer monthly questions about your writing. This month’s question is about questions: what are the most and least favorite questions people ask about your writing? I think my favorite questions are about my process and the least favorite ones are about the content. I hate it when my husband asks me what I’m blogging about, because I construct my blog posts as I write. I also write much better than I speak, so I would rather just show someone what I’ve been writing than summarize it. Then again, I don’t like showing those close to me what I’ve written either.

What about you? Are you an insecure writer?