COVID-19 Again

Posted on by Astrid

I was rather late dedicating a specific post to COVID-19. As such, you might think that not much has changed. However, then you’d be wrong. I guess our government was late with the infection spread prevention measures too. Then again, we didn’t have cases of the virus here in the Netherlands until some two or three weeks ago I think. I may be mistaken, as I hardly ever watch the news.

As such, I did not hear the prime minister’s two press conferences, one last week Thursday and one on Sunday. I did not hear his address to the public on Monday either. I did not watch the Lower House debate yesterday, in which the public health minister apparently fainted. I wonder how they did the debate, given that gatherings are now prohibited.

I did hear some about the news from my family and staff though. My sister called on Sunday, wanting to catch up. She works in a restaurant, so she’s out of work now. Thankfully, her husband works in an office job, so he can work from home.

My mother called on Monday. My parents are both retired, so they don’t have to worry about unemployment. However, my mother is 64 and my father is 71, so I do worry about their health should they catch the virus.

My husband’s work is still going on for now. He works as a truck driver in what is apparently a vital part of transport.

Like I mentioned on Monday, the day center I go to closed yesterday. The day center staff are now coming out to our homes to provide us with activities. I took some of my stuff from the day center with me to the home on Tuesday. Some staff even transferred my elliptical to the home.

Thankfully here, going outside for walks is not yet prohibited. I hope it won’t ever be. I’ve been going for walks with staff twice to three times a day each day now. I don’t need to worry about not getting my physical exercise for now.

I haven’t been in a grocery store yet since the measures took effect, since my facility orders groceries online. However, my husband said yesterday that the grocery store was completely out of regular bread, but it still carried lots of raisin bread.

I do feel that we live in a rather interesting time. It feels very odd, but in a way it feels comforting knowing that we have the Internet now.

Mama’s Losin’ It

#WeekendCoffeeShare (March 15, 2020)

Posted on by Astrid

Hi and happy Sunday evening to you all! I’m joining in with #WeekendCoffeeShare, although I’m not inviting anyone over for a real coffee. Like I said yesterday, it was recommended that my husband do not visit me for the duration of the anti-coronavirus measures. Two of my fellow clients still got visitors today, so I was feeling a bit jealous. Then this evening after the prime minister held another press conference, the staff decided people can’t visit here unless they really need to at all. Day activities are still going on as far as I know, but that might change. So anyway, you’ll need to grab a virtual cup of coffee.

If we were having coffee, I would tell you how amazed I am at the virtual community building this coronavirus pandemic does. I mean, never before have I felt so much in common with my blogger pals from all over the world. Of course, I have a handful of blogger friends with whom I have a lot in common anyway, but with the #WeekendCoffeeShare community and the wider blogosphere in general, I don’t. Now we all over the world share in a common experience, no matter how tragic.

If we were having coffee, I would tell you that this week has been pretty awesome in the exercise department. Though I only went on the elliptical once and never reached my daily step goal, I did get 316 active minutes over the week. That’s more than five hours! I did go for regular walks almost each day. Here’s hoping that the coronavirus crisis won’t ever keep me stuck indoors. I’ve heard in Italy people aren’t allowed to go out on the streets at all, but they sit on their balconies anyway.

If we were having coffee, I’d share that I did some great reading over the past few days. I’m not reading as much as I would ideally want to, but I’m at least picking up books again (figuratively speaking, that is, as I don’t raise my Braille display while reading eBooks).

If we were having coffee, I would share that my husband has been making great progress on living room renovations. We at least used to have softboard on the ceiling, which isn’t fire-resistant. My husband told me he took it all off.

He is a truck driver, so despite the coronavirus management measures, he’s expected to go to work tomorrow. He said it’d be crazy.

If we were having coffee, lastly I would tell you that I spoke to my sister on the phone this evening. My sister works in a restaurant, which is closing for three weeks at least. Her husband can thankfully work from home.

I hadn’t spoken to my sister in a while. She has a six-months-old daughter. I was amazed to learn about my niece’s development. I last saw her in November and apparently she’s making great strides.

How are you all doing amidst the coronavirus craze?

COVID-19 Worries

Posted on by Astrid

The coronavirus came to the Netherlands a few weeks ago. Yesterday, we had the first case in the care facility’s town. The care facility hasn’t yet been affected as far as I know, but still, I grow more scared as the days go by.

I’m not scared of falling seriously ill or dying from the virus. Though some of my fellow clients are in their sixties, we don’t have anyone in my home who is otherwise at risk of serious illness or death as far as I know. I am not really sure whether I should worry about my family in this respect. So far, the thought has only fleetingly crossed my mind.

What I do worry about though is the consequences this will have for our society at large. I worry about people stockpiling food. I know my husband got some extra stuff a few weeks ago already when he saw it coming.

I worry about another economic meltdown. My husband has a pretty secure income, having just been hired indefinitely at his job a month ago. He might be forced to take time off, leading to a significant decrease in income, but he won’t be jobless. I am not sure about my income, as I’m on benefits. I don’t know that I will be able to handle yet another round of budget cuts to health care though.

More importantly in the short term, I worry about the need to isolate if you’re infected. What if I get the virus and need to stay in my room 24/7 for two weeks, not being allowed any human contact? Some other blogger idealized this by writing they’d finally have time to read all the books and binge watch all the Netflix series they wanted. As much as I’d like to escape the day center at times and just hide out in my room, I don’t think I could make this work for two weeks straight.

I also worry about staff needing to self-isolate if they get infected. Will this mean there won’t be staff to care for us? My staff has been trying to reassure me, but the letter sent out to clients’ family yesterday, had no information about what if the virus enters the facility in it. Which seems to be more of a “when” than an “if”.

I’m linking up with today’s RagTag Daily Prompt, for which the word is “Isolate”.

Monday, Merry Monday!

Posted on by Astrid

Today is a pretty good day. Of course, I did experience some anxiety while at day activities, but it was manageable. One of the reasons I was anxious was the fact that a new client was supposed to come to our home today. This woman isn’t going to attend my day activities group, but somehow this got me thinking of what if things change at my group and I get less care. Ultimately, the client’s move in was deferred for now for reasons unrelated to me.

I took a walk in the morning. In the afternoon, I went on the elliptical for twenty minutes. I struggle to make myself exercise, but I can tell it’s definitely helping to lift my mood. I get a lot of satisfaction from seeing my stats on my Fitbit activity tracker. Today, I managed to get 59 active minutes and get 250+ steps an hour for six out of nine hours between 9AM and 6PM. I took a short walk in the evening too.

In the afternoon, I also played a card game similar to Uno with my assigned day activities staff. I won all three games. When my husband and I were in the early stages of getting to know each other, we played this game a lot. Then we forgot about it or did other things. My day activities staff bought a deck of cards for me a few months back and I’ve played games a few times.

I read some Wikipedia entries this evening. Read up on the coronavirus outbreak. The coronavirus in some ways both scares and fascinates me. I mean, I heard there’s at least one confirmed case in the nearby town my husband and I visited on Saturday now. I’m not afraid of getting seriously ill if I catch the virus myself, but all the measures to prevent spreading of the disease do scare me. As far as I know, my care facility doesn’t have a plan on what to do if there’s an outbreak here. I do worry about lots of staff falling ill if there is. Back when the Mexican flu pandemic happened in 2009, I resided in the psych hospital. It didn’t hit the hospital, but if it had and lots of staff would fall ill, management and clinicians would’ve been expected to work on the wards.

As a side note, my iPhone’s spell checker still doesn’t recognize the word “coronavirus”. I think that’s funny.

Today I Feel…

Posted on by Astrid

Today I feel pretty awful. Several of my day activities staff were off sick, so I got assigned a relatively new staff. This was hard enough. To make matters worse, I was pretty badly overloaded all day. I did try to relax in the sensory room, but really couldn’t find my calm.

In the evening, I started a Dutch blog again. It’s been the umpteenth time that I started one and I’m not feeling too optimistic about how long I’ll be able to keep it up. Then again, I did finally find a way to link to it from this blog, so that I don’t have to keep switching primary sites each time I comment on a Dutch blogger for them to see it. Of course other bloggers seeing your content shouldn’t be the point of blogging. At least, it wasn’t my point when I first started blogging. I didn’t care about my stats. But that was over thirteen years ago. Now, of course I do care.

I saw a post by a Dutch disability blogger. That blogger in fact inspired me to start a Dutch blog again. She was discussing the notion of “mild” forms of impairments. I generally hate that notion, even though I still often fall into the trap of judging people, including myself, by it.

For example, I am diagnosed with level 1 autism spectrum disorder and probably level 1 cerebral palsy too. Only my blindness can be seen as “severe”. Even so, it’s of course the combined effect of these disabilities that causes me to need the support I need. Thankfully, the long-term care fudning agency got that in my case eventually. It doesn’t get it in some other cases.

Like, a friend of mine shared a newspaper article a few weeks ago about an elderly man who was profoundly hearing impaired, nearly blind and hardly able to walk but still too “mild” for nursing home funding. This man ended up taking his own life. I was incredibly saddened by this and at the same time, it made me feel guilty. I’m trying to turn this guilt into gratitude though.

This post was partly inspired by the first prompt in a 10-day writing challenge I participate in. The prompt was “Today”.

Feelings After Watching a Documentary on the Blindness Rehabilitation Center

Posted on by Astrid

Today, I got a subscription to see past episodes of Dutch television programs mostly so that I could see a documentary series called Five Days Inside. It’s where three presenters rotate to visit mostly health care settings or other institutions that are not commonly shown to the general public. The episode of four weeks ago was about the blindness rehabilitation center I attended in 2005. I actually still recognized some of the staff talking to the presenter from when I went there.

Watching it had me very emotional. I don’t know why. I guess because most of the clients who were featured, some roughly my age when I attended the program, are so optimistic about their future despite sometimes having recently lost their vision. When I attended the program, I often felt way ahead of these people and way behind of them at the same time. After all, I had pretty good Braille reading skills. My reading speed at the start was more than twice that which is the ultimate goal of the rehabilitation program for adults. As I learned today while watching the episode, some people don’t even have the tactile ability to ever learn Braille. Most will only be able to use Braille for simple labeling, not for reading books, like I do.

On the other hand, I never learnd to cook. Not in those four months in the center or the eighteen months in an independence training home that followed. It wasn’t for lack of teaching, but I couldn’t manage these tasks. Or even simpler tasks such as putting peanut butter on bread.

Today, I talked to my CPN from the mental health agency. We were talking about my skills or lack thereof. She seems to blame my parents for not having taught me properly. I understand. Then again, with my having had a meltdown each time my parents tried to make me learn new practical skills, it’s only understandable that they gave up. My CPN acknowledged this is a common autistic trait. My parents would say I’m not autistic, just stubborn. Apparently I decided from as early as age seven on that I would never learn practical skills because I couldn’t do them visually. Or maybe because I thought I was too smart for them. I don’t know what my father’s theory boiled down to exactly.

And now I see these blind or partially sighted people who are planning on working or going to college. I don’t know how I feel towards them. On the one hand, I feel envy. I wish I could cook tuna macaroni or zucchini soup. I wish I could ride the bus on my own, then go into town to buy raisin rolls. I wish six months of training could teach me the skills to live independently and go to college or work.

Then on the other hand, I feel an enormous sense of relief. I feel relieved that somehow my support coordinator was able to convince a long-term care funding lawyer that it’s at least partly due to blindness that I can’t.

PoCoLo

Taking a Risk

Posted on by Astrid

Today I’m joining in with Five Minute Friday (FMF). The prompt this week is “Risk”.

Last month, like I shared in passing on this blog, I finally opened up to a behavior specialist at my care facility about my struggles. I was really putting myself out there. In my mind, I took a huge risk, because I felt that if I was open about what I really needed, I’d be kicked out of the care facility. I wasn’t.

Then two weeks ago, as I discussed my issues with my community psychiatric nurse (CPN), she started to suggest I live in an apartment building for autistic people. That didn’t sit well with me. I mean, I don’t care who my fellow clients are as long as I get the support I need and I won’t get that in an apartment building. I mean, of course I do somewhat care about my fellow clients, but not in the sense that I need to be able to get along well with them. They aren’t my friends, after all.

I still feel I’m taking an immense risk by opening up about my feelings. I did so again last week, when I asked the staff at my facility to ask the physician for a script for some tranquilizer. The reason is that I’m due to have an old filling repaired at the dentist’s next week. The area surrounding the tooth is already inflamed and I experience considerable pain from it, so I know it’s going to be hard going in and having it fixed, despite the option of getting a topical anesthetic.

So I put myself out there again and asked for something to calm my nerves. Initially, the doctor told me to take 0.5mg lorazepam. Well, that’s not going to work. So I felt off again, like I was being a drug seeker and a burden. I’m used to being seen as a burden, after all.

Being genuinely open about my feelings, my needs and even my wishes is a huge accomplishment for me. I’m totally used to being judged. After all, if people really see me, aren’t they going to discover how wicked I really am? Apparently not.

Gratitude List (February 8, 2020) #TToT

Posted on by Astrid

It’s Saturday and I haven’t published a blog post in a few days. Today I am bored and slightly depressed, so I thought I’d join in with Ten Things of Thankful (#TToT) to lift up my mood.

1. Soap making. On Sunday, I asked my husband to sort through my soaping supplies. He didn’t need to though, as the essentials were all in a wheeled shopping bag. My mother-in-law took me back to the facility on Sunday evening, so she put the entire thing in the back of her car and helped me get it inside. I took it to day activities on Monday and have been making soap a few times this past week already.

2. Ordering new supplies. I didn’t have a lot of soap base in the bag, so I had an excuse to order new soaping supplies. Besides new soap base, I ordered bath bomb and bath salt making supplies. I never made bath bombs or bath salts before. I am really excited to try.

3. The cooking activity at day activities. I used to do a simple cooking activity with the staff intern on Wednesday. Now that her schedule has changed, we do it on Tuesday. This past Tuesday, we in fact had ingredients for two recipes: ham and cheese sandwiches and a creamy cookie dessert. The reason is that last week, we didn’t do the cooking activity because I had a meeting with the behavior specialist then. The intern had time to help me with both. We ate the sandwiches for lunch and had the cookie dessert later in the afternoon. It was extra gratifying, as the clients on my side of my day activities group can’t have sandwiches due to swallowing issues, but most can have the dessert. We served the sandwiches to the other side and I actually had both.

4. My weight. I got weighed in on Wednesday and I had a small gain of 200 grams (less than half a pound). I attribute that to all the treats I had on Tuesday though. I’m also happy, because people actually notice that I’m skinnier (or rather, less fat, of course) than I used to be.

5. Some long’ish walks. I mean, no, I don’t walk for an hour like I used to at my old day activities and with my home support staff, but I did have some walks of about half an hour. Despite not having walked in the evenings much this past week, I did manage to get to 175 active minutes.

6. The support from my assigned staff. I was somewhat distressed this past week, as I’m still not fully recovered from the meltdowns I had last week. However, my support staff are all very helpful.

Like, yesterday I had a meeting with my nurse from the mental health agency. When I explained my difficulty coping with the noise at day activities, she started to suggest I move to an apartment building for autistic people and occupy myself there or go work at a sheltered workshop. This isn’t suitable and my staff helped me explain this to my nurse.

7. French fries and ice cream. My husband said on Thursday that he couldn’t come by for a long visit today but could take me out to have some fries and a snack for dinner. Today, he canceled. Of course, I miss my husband, but I didn’t miss the fries, as my staff thought it’d be a good idea to order fries and snacks for the entire home. We also had ice cream, which was still left over in the freezer from Christmas. I had the last serving of whipped cream-flavored ice cream.

I can’t get to ten, but I’m definitely in a brighter mood now. I guess that should be my eighth grateful on this list. What have you been grateful for lately?

#WeekendCoffeeShare (February 2, 2020)

Posted on by Astrid

It’s February, yay. I’m joining in with #WeekendCoffeeShare again, even though I’m not 100% sure I feel like writing. I had a lot of green tea and only one cup of coffee today. It’s interesting that, at my husband’s and in-laws’, I mostly drink green tea, whereas in the care facility I almost always drink coffee. Anyway, let’s catch up.

If we were having coffee, I’d share that this week was a hard one. I don’t even remember what I did on Monday. On Tuesday, I was in a near-constant panic at day activities. I eventually asked to go to the behavior specialist’s office to see if I could schedule an appointment with her to talk. However, the behavior specialist on my case wasn’t in the office. Another one was, but I couldn’t quite make it clear what I needed and so I went back downstairs.

That evening, I had another huge crying fit. I took a PRN lorazepam, but still didn’t sleep all night. In the morning, I kept crying. My assigned support worker informed me that the behavior specialist responsible for my care was on sick leave, but she called the one who’d been in the office on Tuesday.

She visited me at day activities at around 11AM and I talked for about an hour. I talked about all that I was overwhelmed by. Particularly, I felt that I need more support at day activities. This still needs some sorting out, but mostly I do now get an assigned staff member each day.

If we were having coffee, I’d share that from then on, I felt okay and haven’t had panic attacks or meltdowns. I do struggle with some level of overwhelm and anxiety, but it’s manageable.

If we were having coffee, I’d share that on Thursday, the family of a potential new client came for a visit. This stressed me out a little, because I thought another client coming to my home means less care for me. This isn’t the case, the staff said.

If we were having coffee, I’d say that I traveled by train to Arnhem yesterday. A transregional ParaTransit taxi drove me to Deventer station. There, a travel assistant was waiting to help me onto the train. She apparently needed to help someone in Arnhem next, so she actually traveled all the way to Arnhem with me rather than just helping me get on the train. My husband picked me up from the station at Arnhem again. It was a relatively comfortable way of getting eased into traveling by train again.

If we were having coffee, I’d share that my husband and I had pizza at our in-laws’ yesterday. Then today my mother-in-law would be driving me back to the facility, so she picked me up at my husband’s at 4PM. We first went to my in-laws’ house again, where we walked the dog and ate fried potatoes, broccoli and chicken. I had a Magnum almond ice cream for dessert.

If we were having coffee, lastly I’d share that I finally brought some of my soaping supplies to the facility with me today. One of our home staff was leaving this week, so I had originally intended to make her a soap earlier. Thankfully, she will be working at another home with this facility, so when I do make the soap, I can bring it to her.

How has your week been?

A Letter Explaining My Life Right Now

Posted on by Astrid

Today’s topic in 7 Days 7 Posts is to write a letter to someone explaining your life right now. I have been thinking about reconnecting with the head nurse from the psychiatric resocialization unit for a while. She was one of the most supportive people I ever met during my psychiatric hospital stay, but still, she was a bit prejudiced. Here is a letter to her.

Dear K,

How are you? I hope you are well. Do you still work for the psychiatric hospital? When I last spoke to L (my named nurse from the resocialization unit), she informed me that the entire Nijmegen long-term care hospital was closing and moving to Wolfheze. Do you work there now?

When I last wrote to you and L, I explained that I was living with my husband in the tiny village and going to day activities. I didn’t inform you that I was struggling. I eventually got kicked out of my first day center with this agency and transferred to another one.

Still, I struggled with independent living with my husband. My husband is a truck driver now and his shifts are like 12 hours a day. For this reason, we finally applied for long-term care funding at the end of 2018, which after a long battle was granted in June of 2019. As of September, I live in a care facility for people with intellectual disability in Raalte. I know you didn’t want me to go into housing for people with intellectual disabilities. Well, I am happy here.

We involved the Center for Consultation and Expertise again when I was struggling at my first day center. The consultant psychologist assigned to my case assessed my needs. Among other things, she concluded that I function emotionally at a level of around 6-18 months.

I go to day activities at a group for older people with profound intellectual disability, most of whom live with me too. I go for almost daily walks. I love to go to the snoezelen® room too. I also do a weekly cooking activity with the staff intern. It’s sometimes difficult to figure out activities I can do, because the other clients mostly just sit around and I almost need one-on-one support with most activities.

I am still married to my husband. We bought a house in Lobith, but this is mostly for him to live in and for me to go to on week-ends.

I still see the mental health team, but have decided not to pursue any formal therapy program for now. Dialectical behavior therapy, which I used to try, didn’t work out because of my autism and my dissociative symptoms. I don’t feel comfortable going through the assessment for dissociation though.

Anyway, hope you are doing well. I suppose L is around retirement age now, but if she still works at the hospital and you still see her, send her my warm regards.

Astrid