Moving to the Care Facility Soon!

As regular readers of this blog know, I’ve been planning on moving into long-term care for nearly a year. That is, that’s how long it’s taken me to decide I for sure want to apply for long-term care funding, to apply for it, to appeal the decision denying me the funding, to win the appeal and then to find a place. Honestly, this whole journey has been going on much longer. Twelve years ago this month, I told my support coordinator in Nijmegen that I wanted to get into one of their living facilities for people with mobility impairments. Due to my psychiatric hospitalization, this idea got trashed and we ended up looking for places for people with mental illness or “high-functioning” autism. That took many years and was unsuccessful in the end. I got kicked out of the mental hospital in May of 2017 for supposedly wanting to remain institutionalized forever. Well, the psychologist was right in that I feel I need 24-hour care for the rest of my life, but I most definitely didn’t intend on staying in the psychiatric hospital forever. I’d much rather go into a facility for people with developmental disabilities. Thankfully all this time of battling the system that says that an IQ above 85 means you should be pushed towards independence forever, ultimately paid off. I will be moving to the care facility in Raalte on September 23.

The house I will be placed in, has room for twelve residents, divided between two groups of six. There’s always at least two staff in the house during the time the residents are home and awake. During the time we’re supposed to be at the day center, there’s an on-call staff for the entire living facility, but of course there’s staff at the day center. During the night, there’s a sleeping staff at my house, but there’s also a staff who is awake and serves the entire facility.

I will get a room with its own bathroom. This room is a bit further down the hall than the other currently available room, but that room has a shared bathroom. At first, I said I didn’t mind, but the staff warned me that the other clients don’t clean up after themselves. I will get a call button to alert a staff member, so if I can’t get out of the rooom for whatever reason, I can still call the staff if they don’t hear me shouting.

On Thursday, the staff will be discussing what day center group I’ll be placed in. The day center manager did say, after I asked it, that my elliptical can be placed there. They have day activities Monday through Thursday and on alternating Fridays.

They will make sure they have an extra staf available on the 23rd when I move in. They asked my day center’s coordinator whether either she or my support coordinator can come the next day for proper handover.

After a month, we will have a review of how things are going. They made it clear that this is not for the staff to decide I need to be moved out again, but for us to discuss ways the staff could possibly better accommodate me.

I am very excited to go to Raalte! My husband may ask for time off work to move me, especially since this week is also the week we’ll meet with the solicitor for property handover on the house we’re buying. It all is a bit stressful still, but I”m so glad I’ll finally find a place that’s not for independence training or treatment or the like. Finally, I’ll be able to stop merely surviving and start living.

Candy Cake

I want to write more often about the ordinary things I experience in daily life, particularly those I’m grateful for. I considered doing a daily gratitude post or the like, but I guess that would get boring. Today though, I have some really joyous experiences I want to write about.

I may or may not have shared that, when my husband and I got married in 2011, we got a homemade liquorice cake from the staff and patients at the psychiatric unit I resided at. The bottom was made out of a Dutch candy called foam blocks. These are really made entirely of pressed-together powdered sugar and they’re yuck. The top, however, was layered with my favorite sweet liquorice. I loved it!

When my support coordinator and I were in the process of appealing the authority’s decision to deny me long-term care funding, we agreed to make another liquorice cake if we succeeded. And we did! Today, we made the cake.

Candy Cake

As you can probably see, we didn’t choose foam blocks for the bottom layer. Instead, my support coordinator bought waffles, which are not only more tasty but also softer. This meant that my fellow clients at day activities who have swallowing difficulties, could at least eat some of the cake. After all, they can’t eat liquorice.

We then made a layer of marshmallow diamonds. Then we layered the top with an assortment of winegums, sugared candy and liquorice. Finally, my support coordinator sprinkled sugared pop rice over it. In the middle, we stuck a candle in the shape of the number four into one of the marshmallows. This symbolizes the fact that I got my funding approved on June 4.

My support coordinator took the picture above, so that I can show it to my husband and on this blog. Seeing AI, my image recognition software, did recognize the picture as being of a cake.

We ate some of the cake at our mid-afternoon coffee break at day activities. Though the other clients don’t understand the reason I made this cake, they definitely enjoyed it. And so did I!

I Got Approved for Long-Term Care!

Last Monday, I was so discouraged that I wrote a letter to myself motivating myself to keep going at least till 2021. I was in the process of applying for long-term care and I wasn’t expecting my funding to be approved until 2021. After all, my original application early this year had been denied. My support coordinator appealed for me, but I wasn’t expecting much out of it. The reason I had my hopes focused on 2021 is that by then, mental illness will no longer be excluded as a ground for long-term care, meaning that those with lifelong mental health conditions preventing them from living independently, will qualify.

Of course, I’m not just mentally ill, even if you see autism as a mental health issue (which it isn’t in my opinion). I am blind and have mild cerebral palsy too. I met some people at the CP conference who qualify for long-term care for just CP, even if it’s as mild as mine is. Then again, the rules have gotten stricter and those who lived in group homes or supported housing prior to 2015, qualify much more easily than those who didn’t, like myself. In this sense, my long psychiatric hospitalization works against me.

Two weeks ago, the lawyer in charge of my appeal with the funding agency (I didn’t have my own lawyer) said I probably didn’t qualify for long-term care. The reasons were complicated. From one person, I heard that the physician in charge of making medical recommendations was willing to recommend long-term care but was restricted by law because of my history of mental illness. From another, I heard that I couldn’t get long-term care because the physician couldn’t decide whether my primary disability is blindness, cerebral palsy or autism, so they decided not to qualify me at all. That’s rather weird, because they almost made it look like I would qualify with my exact limitations if only I didn’t have a psychiatric diagnosis on file.

I don’t know how they eventually managed to do it, but late Tuesday afternoon, the lawyer called my support coordinator to inform her I had been approved after all. I am so happy! I qualify based on blindness as my primary disability.

Now I feel weird. I know I should be happy and I am, but I feel also disconnected from myself. In a way, being approved for long-term care is an ending, in that I’ll (unless the laws change) never have to prove that I need 24-hour care again. On the other hand, it’s a beginning, enabling me to start looking for a group home. Because I qualify based on blindness, we may or may not be able to get me into a group home with my current care agency. After all, they primarily serve those with intellecctual disabilities. I prefer this agency though, so we may be looking into tweaking my care profile. If I can’t live with this agency, we’ll check out the two blindness agencies here in the Netherlands. One has housing about an hour’s drive from my current home, while the other agency’s housing is 90 minutes to two hours away. My husband said though to prioritize suitability of the group home rather than proximity to our current home.

I feel pretty distressed about telling my parents. They will be visiting me for my birthday at the end of the month, but I don’t know how far things will have moved along then. I don’t really know when to tell them. It’s okay though, I tell myself. I don’t need their approval.

Thankful Thursday (May 30, 2019): My Mother-In-Law

It’s Thursday and I haven’t blogged in a few days. I’m feeling the pull of depression worsen and that’s not helped by the fact that I still am not done with the long-term care application process. My husband, in-laws and support staff try to remain positive, but I’m having a really hard time of it. I haven’t updated my list of alters on this blog in a while and several have recently emerged. Some seem like they’ve been around longer, but a recent disappointment in the care application process caused us to split again too. I don’t know whether that’s even possible or it’s a sign of us being a fake dissociator, but oh well.

Thursday means it’s time for Brian’s weekly Thankful Thursday blog hop. I only participated once before and that was when I’d just seemed to lose hope that my situation would ever improve. Because the long-term care laws would be changed in 2021 to allow the mentally ill access, I said that by then everything would fall into place. It looks more like that than ever now. Only thing is, I’m pretty sure I can’t hold on that long. But I digress. This post is supposed to be positive.

Today I am most thankful for my in-laws. When I got the latest disappointing news on Tuesday, my mother-in-law offered to pick me up from day activities. This was unrelated, but it couldn’t have been more coincidental. I spent the evening with her, my father-in-law and my mother-in-law’s niece, who temporarily lives with my in-laws. I spent yesterday evening there too, meaning I had to spend a manageable amount of time alone.

Today is a bank holiday and tomorrow, my day activities is closed too. Since my husband does have to work, I would’ve had to spend the day alone at home if not for my mother-in-law. She offered to come by in the morning for a cup of coffee and in the afternoon too for either tea or to take me to my in-laws’ house if my husband would be home from work late.

I am also thankful for my support coordinator and support worker. Next Monday, my day activities will be a bit short-staffed so I can’t go for the weekly Monday-morning walk, as there’s no-one to guide me. However, my support coordinator offered to come by in the afternoon to take me on a walk. She’s also been incredibly supportive of me during the latest developments. My husband said she deserves half a truck filled with Merci chocolates for all the work she does for me. And I agree. My mother-in-law deserves the other half of the truck.

Gratitude List (March 16, 2019) #TToT

I have been feeling a little off lately. This morning (or early afternoon to be exact), I awoke and immediately felt grumpy. I had a hard time snapping out of the moodiness. Then I read in a Dutch Facebook group about listing the positives of a day. I haven’t participated in #TToT for a while, so it’s about time.

1. Pizza on Sunday. We’d planned on having fries and snacks on Friday, but then my husband had to work late, so I ate at my in-laws. I don’t know whether the pizza night on Sunday was to make up for that, but I loved it.

2. More day activities! From next week on, I’ll be going to day activities a full day rather than just the morning on Monday. On Tuesday adn Friday, I already go full days and I’ll try Wednesday someday. Thursday will remain my day off.

3. Swimming on Tuesday. I was able to go in the deep pool again and swam almost the entire half hour.

4. Eating potato and carrot mash at my in-laws. There’s a word for this in Dutch, but I’m too lazy to look up whether there’s one in English too. My mother-in-law gave me the choice between that and sauerkraut. I didn’t expect to like the mash either, but I definitely hate sauerkraut. Surprisingly, I liked the food. Not enough to ask for second helpings, but enough to eat my first serving.

5. Phone check-ins with my support coordinator. As of last week, she’s been checking in with me at the end of nearly each day she works. I love it.

6. Being able to go for a short walk with my support coordinator on Wednesday. It rained almost the entire day, but when we went for a walk, it didn’t.

7. A rainbow. When walking with my support coordinator, she spotted it and took a photograph. She says this is our lucky rainbow.

Rainbow

8. Blueberries, bananas and honey liquorice. I went to the supermarket with my support worker on Thursday and got myself these. I particularly loved eating the blueberries in my yoghurt on Friday.

9. Outdoors horseback riding. Again, the weather treated us well on Friday afternoon. It rained the whole day, but when it was time for us to go horseback riding, it didn’t. I don’t like indoors horseback riding nearly as much as I do going outdoors, so this was wonderful.

10. Meditating. I’ve been doing a bit of it again this past week. It’s still hard to find the time and focus for it, but I love it. I finally figured out a way to play the learning to meditate course on Insight Timer. For whatever reason, VoiceOver renders the button to play it non-clickable, but somehow I got it playing. Now I may get Insight Timer premium once my disability payment is in.

What have you been grateful for lately?

Gratitude List (February 2, 2019) #TToT

I didn’t write much this past week. Not because I didn’t have anything to share, but because somehow the words wouldn’t make it onto the page. I had an extremely eventful week, which I will share more about later and which I already shared a bit about last Wednesday. Today, I’m going to write a gratitude list for the past week. As always, I’m linking up with #TToT.

1. My shoulder pain being almost over. Like I said two weeks ago, I suffered a small collarbone fracture. Yesterday was the last day of my strong painkillers. I had wanted to quit them earlier, but my husband said not to be too hard on myself. Today though, I only took two paracetamol and am more or less fine. Granted, I didn’t do a lot of repetitive work, so after I’ve finished this post, it’ll probably hurt more.

2. Being able to exercise again. I went on the elliptical for a total of 35 minutes yesterday. I did take breaks, but I felt my legs more than the injured arm.

3. Sensory activities. I already shared last Wednesday about the living facility I might go into that has lots of sensory supplies. Seeing this inspired me to explore the sensory equipment at day activities more. I found a large cylinder which you can roll on. I also spent time in the small (almost too small for my overweight body, but not yet) indoors cocoon swing.

4. Buying my Macbook. I haven’t unboxed it yet, but I’m glad I finally put one foot in front of the other and bought it.

5. Stuffed animals. Today, I experienced severe overload and had a meltdown while at my in-laws. My mother-in-law brought me a huge collection of Disney soft toys and other stuffed animals. I loved them.

6. Sleep. I didn’t sleep well early in the week. Thankfully, towards the end of the week, I slept better.

7. Getting some delicious treats for myself on Thursday. Some were healthy too, like blueberries. Some were not (liquorice!) but I loved them nonetheless.

8. The day activities staff treating us to some special food on Friday. She decided to spoil us, so for lunch on Friday, we had croissants and some salty crackers with cream cheese and olives. I went to the marketplace to buy them with this staff.

9. My husband. I need to be extra grateful for him because this past week has been stressful.

10. My support coordinator, whom I saw four times this week.

What have you been grateful for this past week?

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?

Panicked Ramble

Hi, I’m Carol. I struggle a lot with our autism. I’m a little panicky at the moment. First of all, I woke up with terrible pain in my left shoulder. It’s been bothering me alll day. We finally took an ibuprofen when we got home from day activities at 5PM. It’s better now, but still bad.

This morning, I overheard the staff at day activities talking about a possible new client joining our group. I immediately worried that this’d mean I’d be kicked out. Not because they need the place (or maybe because of that too), but maybe if my challenging behavior worsens as a response to the staff being busier. That’s what happened at my previous day activities. Then again, they had three new clients join the group in a matter of weeks.

Moreover, we had a Christmas meal at day activities today. This meant my day was different from the usual Tuesday. One of the staff at my group had to help clean up after the meal, so she was in the kitchen most of the afternoon.

Then the staff started talking about day activities next week. They’re closed on Monday but open on thursday and Friday. Then, only six of us will be at the center, which really isn’t enough to justify staff being there. They said that the center normally closes if fewer than ten clients will be there. We want so badly to attend day activities and I somehow understood they’re considering closing the center next week. The staff reassured me, saying they had to set this rule for next year but for now the center will be open.

Still, when I got home, the whole thing overwhelmed me. I started seeing images in my mind of myself with worsening challenging behavior. I felt unsafe at home alone and rejected too. Like, they kicked us out of the independence training home in 2007 and out of the institution last year because of our behavior. Rather than giving us more care when we needed it, they gave us less. Same with the old day activities place. I really hope we can somehow find us suitable supported housing, but I’m so scared that no place wants me. I finally called the on-call nurse at the psych hospital and had a chat with her. That was good, but I feel guilty about having called, because my team say I really shouldn’t need the prescription phone call anymore.

A Very Validating Experience

As I write this, I deal with a nasty cold that I’ve been feeling come on for a few days but wasn’t willing to accept was coming on. Not that there’s anything I can do about it. Whenever one of us has a cold, my husband always searches the Internet to find out whether they’ve found a cure yet. So far, no luck. I’m not terribly sick as of yet anyway. I think my husband suffers almost more from the weird noises my body makes when I can barely breathe than I do.

A lot has been on my mind lately. I could of course write a gratitude list and devote a sentence or two to each thing. I may do that eventually, but right now, I want to share about a specific experience in more detail.

Last week, we told our staff at day activities about ourselves. We disclosed that we may have dissociative identity disorder (calling it multiple personality) and explained that it’s a trauma-based survival mechanism. The staff member we told was totally fine with it. She actually validated us, saying she’d seen a little come out to her.

Then on Monday this week, we had a flashback while at day activities. A fellow client needs to be given oxygen at times. This reminded one of our littles of the time we needed oxygen as a four-year-old because our trachea had closed up. An adult alter was able to explain this to a staff before the little came out, but then we could no longer keep ourselves from switching and the little popped out.

This little started talking to our staff, the one we’d come out to the week before. She asked to sit on the staff’s lap. We had agreed when we first came out as multiple that this is okay with both the staff and us. It was such a nurturing experience.

Afterwards, an adult did feel the need to check with this staff that it’d been alright with her, but it had been no problem. That’s a good thing about doing day activities at a center for intellectually disabled people. I’m pretty sure that in psychiatric care, we’d not be allowed to express such a “childish” need for affection.

Gratitude List (December 7, 2018) #TToT

Hi and welcome to my gratitude list for this week. As always, I am linking up with #TToT. Here are the things I’ve been grateful for lately.

1. My writing spirit returning. In November, I only managed twelve blog posts. That’s really not as much as I’d like. I cannot say for sure that I’ll keep in the writing mood, but I certainly am today.

2. Getting to know new bloggers. I’ve been checking out a ton of bloggers and writers lately and am loving it.

3. St. Nicholas. We celebrated it at day activities on Wednesday. It was a little chaotic, but still lots of fun.

4. Festive candy. I love all the St. Nicholas and Christmas-related candy. So sad they don’t have it in the stores all year, although that’d probably be bad for my body.

5. My supportive staff. My support coordinator is still off sick, but my support worker and day activities staff have been incredibly accommodating. This week, my support worker offered to come on Thursday early in the afternoon even though that wasn’t supposed to be a support time for me at all. On Monday, I will be allowed to stay at day activities for the full day again, because my support coordinator was supposed to see me then.

6. Swimming. According to my Fitbit, I managed 53 laps this week. I can’t believe it, but oh well.

7. The stationary bike at day activities. Our staff are trying it out to see if they want to buy it for the day center. I hope they will. I went on it threee times this week. Unfortunately, my Fitbit doesn’t track my going onto it.

I can probably think of more things, but it’s time to go off to bed now. I hope you all had a great week.