#WeekendCoffeeShare (March 27, 2021)

Welcome to another #WeekendCoffeeShare post. I just had my afternoon coffee about an hour ago and am going to have a soft drink in a bit. Of course, I can still make you a Senseo if you want. Let’s have a drink and let’s catch up.

If we were having coffee, I’d say that I’m just about as well as it gets with respect to my cold. I am still a tiny bit sniffy, but I don’t think it gets any better anytime soon. I didn’t go to Lobith this weekend, even though my husband had promised me pizza at our house if I did. After all, yesterday I still wasn’t convinced I was well enough. Instead, my husband is coming over tomorrow.

If we were having coffee, I would say that this past week has been great in the walking department. Like I said yesterday, I’ve been quite active. Today was an exception, as it was raining on and off all day so far. I hope to still get some steps in this evening.

If we were having coffee, I would talk some about the political saga that unfolded after last week’s general election. The current prime minister, Mark Rutte, won the election again, probably because people are used to him doing the corona-related press conferences. Before the election, he’d hinted at some restrictions being lifted for Easter. Of course, that was just a political game to win voters, as in the last press conference, only the curfew got moved from 9PM till 10PM.

Speaking of the lockdown, my husband predicts from what he’s read that most of the restrictions will remain until mid-June. I really hope he’s wrong, but at least we can still see each other (provided neither of us is under the weather).

If we were having coffee, I’d tell you I’ve been loving reading other blogs as well as writing my own blog posts. I’m not yet preparing for the #AtoZChallenge. Maybe I should, as it’s in less than a week.

I’ve also been in contact with WP support again. The reason is the news that the classic editor might be disappearing after all. I’m not sure WP support itself knows what it’s doing, as I get mixed messages. I’m trying to let it go for now though, as so far at least I can still blog.

If we were having coffee, lastly I’d share that we might get new staff here in my care home soon. I think I mentioned last week that a male staff was having a look around our home last week Saturday to see if he wanted to work here. Turns out he does. He’s been orienting here a few more times. He used to work in a home for people with intellectual disability who also have complex care needs due to behavior. I got the impression he didn’t like that anymore, so I feared I’d scare him away from wanting to work here. Turns out he’s going to work in both homes.

Then on Thursday, another prospective staff, also male, toured my care home. The manager informed me in advance that he was coming, which I liked. I’ll be curious to know if he decides to work here.

What’s been going on in your life?

Free to Belong in Long-Term Care

Today, one of Mama Kat’s writing prompts is to write a blog post inspired by the word “Free”. This definitely appealed to me, as a survivor of childhood trauma as well as abuse in the psychiatric system that continued until I was 30.

Last Tuesday marked the five-year anniversary of the opening of my current care facility. It also was the day I was here eighteen months. Five years ago, I myself still resided in the psychiatric hospital. Some of the worst abuses of power of my psychiatric hospital stay hadn’t even happened yet.

As a child, I suffered significant trauma both at home and at school. Most of it left only invisible wounds, but these are as deep as any physical wounds could’ve been.

Like I said on Sunday, my parents fought my schools, especially special ed, all the time. As a result, I endured frequent school changes and was at the center of conflicts pretty much my entire childhood. Whenever I had adapted to a school environment, I was removed again. I also didn’t have the opportunity to form lasting friendships. The feeling that I didn’t belong anywhere, was instilled in me from an early age.

When I finally moved to the mainstream high school my parents deemed best for me, I knew within a month that I didn’t belong here either. I managed to finish the grammar school program and graduate in 2005.

Then started my long journey through the adult disability and mental health care systems. My parents wanted me to go to university and live independently right away, but I asserted myself and sought help first.

I eventually lived independently for three months in 2007, but then landed in a mental crisis and was hospitalized. Over the following 9 1/2 years, I endured a lot of ongoing trauma at the hands of the psychiatric system. I eventually got kicked out of there and started living with my husband. That didn’t work out either. That is, our marriage is still strong, but I couldn’t cope living semi-independently.

All this to say, now I’m in long-term care and finally free. I am able to make my own choices now. It’s still a little hard to grasp that I am asked to sign for any restrictions to my freedom that may be needed for my safety. In the psychiatric hospital, seclusion and restraint were just shoved down my throat even though I was an informal admission. Either that or I was basically left to my own resources, since, being diagnosed with borderline personality disorder, I needed to take responsibility. Both of these extremes left me feeling unsafe.

Now, I not only am asked to sign for restrictive measures, but I am allowed to request extra support. This allows me freedom as well as safety. I am free now and yet I belong. If only I felt this way already. That may take a long while still.

Mama’s Losin’ It

PoCoLo

Things That Made Me Smile (March 22, 2021) #WeeklySmile

Hi all on this lovely Monday! I am so excited to have discovered the Weekly Smile. This is, as the name suggests, a weekly blog event in which participants share what made them smile. Having discovered this meme itself is a reason to smile. I love being positive! Let me share what else made me smile.

First up is my new assigned staff’s kindness. Like I said in my #WeekendCoffeeShare post on Friday, I have a new assigned staff. She is calm, kind and very dedicated to her job. I initially worried she might get too attached and then have to withdraw as my assigned staff. She reassured me though that she maintains her professionalism.

Yesterday, I was feeling a bit triggered. The student staff, with whom I am not fully comfortable yet, had been my one-on-one for the evening. In addition, a male staff may get to work in my home soon. He seems kind enough, but still, it’s an adjustment. All this led me to feeling a bit stressed out when I was going to bed. Thankfully, my new assigned staff comforted me.

After the staff had taken me to bed, I pressed the call button a few times for the staff to come back, but she didn’t mind. She has this little rhyme she tells me each time she puts me to bed. It goes something like this:
Sleep well,
Head on the pillow,
Ass in the straw,
Then Astrid sleeps soon.

This time, the staff adjusted the rhyme to address not just me, but all of the voices (alters) inside my head. That definitely made me smile.

Second is my sensory room experience that I was able to create in my own bedroom. First, I found a calming essential oil blend to put in my diffuser. Then, I found the album on Spotify that I used to have in the CD player in the day center’s sensory room. It is called Songbird Symphony. Lastly, I crawled under my weighted blanket and had my staff cover me with the ball-filled blanket that came with the sensory bed from our makeshift sensory room. In total, I had at least 20kg of weighted blankets on top of me. This probably isn’t healthy for actual sleeping, so I threw off the ball blanket before actually drifting off to sleep. However, the feeling before this was so peaceful. It reminded me of Temple Grandin’s “hug machine”. Reading about that introduced to me the comforting effect of deep pressure years before I felt able to explore my own sensory experiences. Now, I totally appreciate my care staff, physical therapist and the manager for having helped me find my sensory comfort.

What made you smile this past week?

Good Enough

Today’s optional prompt word for #LifeThisWeek is “Good”. Denyse takes on a cynical approach to the word, which reminds me of the many degrees of being called “good” I experienced.

In my elementary school years, my parents were in a constant fight with the schools for the blind I attended about my educational needs and my potential. According to the school, I was a good enough student. That’s the literal translation of the words that appeared on my report card often. Sometimes, when I was better than average, just “Good” appeared.
My parents thought I ought to get some more recognition. They thought I was excellent, sublime, a genius.

My schools thought I should be going to their secondary school program, which at the highest level catered to average students. My parents believed I could do far better.

I doubt, to be very honest, that my teachers truly didn’t see that academically, I was above-average. At least some of my teachers must have seen this. However, socially and emotionally, I was significantly behind. This was probably the real reason my schools recommended I continue in special education. My parents disagreed. They felt that I would be overprotected and underestimated in special ed. They might’ve been right. We’ll never know, since my parents took me from educational psychologist to educational psychologist until they had the recommendation for mainstream high level secondary education in their hands.

What I do know, is that I ended up being overestimated and underprotected. My parents would love to deny this and blame the staff in independence training for essentially setting me up for long-term care. Agree to disagree. Then again, we’ll never know, because I didn’t go into independent living and on to university right out of high school.

Sometimes, I wish I was just the average, good enough student that some of my teachers saw me as. Then at least I wouldn’t have to face the enormous challenge of both a high IQ and an emotional level comparable in many ways to an 18-month-old child. Then, I might not be writing blog posts in English, but I also might not need 24-hour care.

Then again, I enjoy writing blog posts. I like my care facility. Life is good enough for me.

#WeekendCoffeeShare (March 19, 2021)

I am once again early at least for me with my #WeekendCoffeeShare post. It’s right between my dinner and my evening coffee now, but I can make you a Senseo coffee if you want it. Let’s have a drink and let’s catch up.

If we were having coffee, I would tell you that I’m still having a cold. It’s a lot better than it was last week, but I’m still sniffy. This morning, I had a bad cough, but that seems to be gone now.

I am so glad though that it’s not COVID. This afternoon, I was informed that another home within my care facility is in isolation due to a client having tested positive for COVID. This does worry me a bit, since that client must’ve contracted the virus after being fully vaccinated. The staff do try to reassure me though.

If we were having coffee, I’d share that, now that I’m feeling a lot better cold-wise, I picked up the walking habit again. I managed to reach my goal of 10K steps both yesterday and today.

I did fall on my knee today while walking. Thankfully, I just suffered a slight scrape to the skin.

If we were having coffee, I would tell you that yesterday marked one year since the day center closed due to lockdown. A staff and one of my fellow clients made cheesecake to celebrate. Yummy!

A photo of me in front of the cheesecake

If we were having coffee, I would share about some changes to my care. First, I have a new assigned staff. She isn’t new to me or the home, just new to being my primary support worker. My former assigned staff is in college getting her nursing degree and was a bit too busy to have me in addition to two other clients to be assigned to. I really like my new assigned staff.

However, I was briefly triggered too. After all, my new assigned staff is really involved with my care and I worried she might get too attached and then have to step back. I thought this might’ve happened to my old assigned staff, but they both reassured me this isn’t the case.

Also, my one-on-one got extended with half an hour each day as of today. This might not seem much, but it prevents me having to deal with too many staff changes. After all, in the old situation, I’d have day activities till 4PM, then have to rely on the regular evening shift for half an hour before my one-on-one comes on. Now I’ll have that half an hour covered by one-on-one too. I’ll still have some time without one-on-one in the evenings and on week-ends in the afternoon, but that’s totally okay.

If we were having coffee, lastly I would share that my husband plans on visiting me briefly tomorrow. That is, if my cold isn’t too bad. We’re planning on going to a fast food chain drive-through.

How are you all doing?

What a Day, What a Year! #SoCS

Today I got my COVID test results. Thankfully, I’m negative. Like I mentioned yesterday, I went into room-based isolation with cold symptoms and a sore throat yesterday morning. That day in isolation was hard. I constantly imagined testing positive for COVID. That’d mean at least five more days in quarantine. It’d also mean I would have to alert my nurse practitioner and the facility’s behavior specialist, both of whom I’d seen on Thursday.

I felt intense guilt about possibly having infected my staff too. After all, when I was still only experiencing a sore throat, the staff tried to reassure me that I couldn’t possibly have COVID. It may be true – I had my second shot of the vaccine last week -, but I couldn’t be sure.

Can you imagine that, a year ago, we were just at the beginning of this pandemic? On March 12, 2020, the first local case of COVID-19 had been discovered. On March 13, the community service event that was due to take place at my day center as part of a countrywide volunteering initiative, had been canceled. The day center closed five days later, on March 18.

I hadn’t seen my husband since the first weekend of March I think and wasn’t going to see him again till sometime in late May. After all, at first visiting the care facility was discouraged, then it was completely prohibited except in rare cases when a family member was essential for a client’s care. My husband wasn’t.

I am so glad that now, during the second lockdown, care facilities remain open to visitors except when there’s an outbreak of COVID or suspected COVID, as in my case yesterday. I am so glad one of my fellow clients, who had her birthday on Tuesday, may receive a visit from her family tomorrow.

I had my own birthday on June 27, one day after the final restrictions to visiting were lifted, provided there’s no countrywide lockdown or COVID outbreak. Though we’re in a countrywide lockdown again, the lockdown policy remains that care facilities can be open. I credit the prime minister’s late mother, who died in a nursing home during the first lockdown or so I believe.

This post was written for today’s Stream of Consciousness Saturday (#SoCS) prompt of day/week/month/year.

My Twelve-Year-Old Self Would Be Surprised

Today, Emilia of My Inner MishMash had a very interesting question of the day. She asks what twelve-year-old you would never believe about your current self. This is the perfect question to get me reflecting on how I saw my life at age twelve.

Honestly, there is nothing about my current life that would be so far off that my twelve-year-old self wouldn’t believe it. I mean, I alternated between seeing my adult self as a professor and seeing her as a care facility resident. That first image, I saw as the “good” one. I would be a linguistics or mathematics professor. Never mind that, at least here in the Netherlands, mathematics isn’t a suitable university major for a blind person.

That second image, I saw as the “bad” one. I have probably written before about the sixteen-year-old girl in the media in around 1997 or 1998, when I was eleven or twelve. She had a low IQ, but not so low that she’d fit in with intellectual disability services. She also had severe challenging behavior. The reason she was portrayed in the media, was the fact that she was being restrained and held in solitary confinement in an adolescent psychiatric hospital. I totally identified with this girl.

Of course, currently, I’m not being restrained or secluded. I have some experience of manual restraint and seclusion, but not to the extent this girl did.

This gets me to the part that would probably surprise my twelve-year-old self most about my life right now: that I am relatively happy. For what it’s worth, I totally thought that, if I had to be in long-term care as an adult, I would be utterly desperate.

Another thing that would’ve totally surprised twelve-year-old me, is that I’m married. In truth, it still surprises me at times that my husband is willing to share his life with me. Though as a teen, I imagined becoming a mother later, I never quite considered a partner in my life. Besides, being married doesn’t at all fit in with the “bad” image of myself as a care facility resident.

Lastly, like I commented on Emilia’s post, the one thing that my twelve-year-old self wouldn’t believe about me, is that I found my faith in God. After all, I was raised atheist and was at age twelve clueless about faith. My teachers at the Christian school for the blind made me participate in prayer, something I had a huge aversion to. Honestly, till this day I struggle to pray at set times of the day because it feels more like a ritual than an investment in my relationship with God.

What would surprise twelve-year-old you most about your life right now?

#WeekendCoffeeShare (March 7, 2021)

Okay, I’m so very late with my #WeekendCoffeeShare post for this week. Sorry! I was in Lobith yesterday and, though I returned already before noon today, I really didn’t find the time to write. I have so many things I want to write about and yet none come out clearly onto the screen. So let me just ramble. There might still be coffee here or you can grab a soft drink. Let’s chat.

If we were having coffee, I would tell you that I’m still struggling with hypervigilance and emotional flashbacks. If anyone is familiar with complex PTSD, I’d love to know your tips for dealing with these. I mean, I’m constantly on high alert and on the edge of flight.

It doesn’t help that I have no idea what triggered me. I mean, could it still be the dentist’s appointment at the main institution last Tuesday? I’m pretty sure that’s not it. In any case, I’m trying to cope the best I can.

If we were having coffee, I’d share that, on Friday, I showed a staff a case video from the Center for Consultation and Expertise on a woman with severe (complex) PTSD. It helped clarify some of the issues I’m facing.

If we were having coffee, I’d share that I had a bit of a meltdown when I came back to the care facility from Lobith early this afternoon. I wasn’t happy about the student staff doing my one-on-one this evening. Thankfully though, the staff reassured me that the student or I could call for another staff if needed. It wasn’t needed ultimately.

If we were having coffee, I’d then try to lighten the mood by talking about the weather. It’s cold here for March, with tempts dropping below freezing at night. Still, it’s quite sunny. The weather forecast predicts rain for all of the upcoming week though.

If we were having coffee, I’d share about my husband’s great chicken wraps that he’d made me yesterday. They were especially great with tabasco sauce in them.

If we were having coffee, lastly, I would proudly announce that I got in over 10K steps five days in the past week and over 12K steps on three of those. Today and yesterday, I didn’t do so well, but I still got in over 5K steps each day. That’s what my husband says the scientific community has calculated as the real recommended minimum step count each day. My husband said the 10K mark was made up by the inventor of the activity tracker. Regardless, I did average over 10K steps over the past seven days. Unfortunately, my sister still beat me on Fitbit. Oh well.

What’s been going on in your life?

Gratitude List (March 5, 2021) #TToT

It’s Friday again and I badly want to write. I’m feeling quite distressed by emotional flashbacks right now. To turn my mood around, I thought I’d do a gratitude list again. As usual, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful to live in a care facility. I feel very insecure about my living arrangement right now, but my staff reassure me that I don’t have to leave. I am so extremely grateful for my staff’s patience with my anxiety!

2. I am grateful my staff make sure someone comes to sub when a staff is ill or has other obligations. Today, my day activities staff had to leave unexpectedly at around 1PM, but the staff made sure someone came to take her place. In the psychiatric hospital, we’d just be left with fewer staff if this happened.

3. I am grateful for chicken Siam. A fellow client and staff cooked that up for this evening and I totally love it! This client can’t have the cashews that normally go in, so there’s more left for me. 😉

4. I am grateful I got my second shot of the vaccine yesterday. I am also grateful that I didn’t experience any side effects. In fact, I hardly even felt the needle go in, so worried at first that they were doing something wrong. I try to trust that I got the vaccine correctly though.

5. I am grateful for God’s presence in my life. I have been extra involved with my Bible reading lately. I am grateful I finally figured out how to bookmark, highlight or copy verses in the YouVersion app and how to add notes or prayers.

6. I am grateful for all the lovely treats the staff who left our home last week, left for us. We had winegums, candy bars, ice cream and more.

7. I am grateful for no rain this week. It’s cold outside, but usually sunny. For this reason, I was able to get in over 10K steps each day of the week so far (not counting today, but I will later).

8. I am grateful I’m done with dentistry appts for at least another several months. My experience at the dentist’s was pretty bad last Tuesday, by no fault of the dentist. Let me just say I’m glad I’ve got it over with.

9. I am grateful I got to talk to my parents on the phone on Monday and that they are well. I had a nice chat. I will need to phone my sister later too. My parents were going to visit her and her family on Tuesday.

10. I am grateful for the ability to chat to other clients, including those from other homes within my care facility. I chatted some with a guy from the home next to us while we met outside of the day center a few days back. We used to go on walks together with the staff and also have coffee at each other’s homes, but due to COVID restrictions we no longer can. I am looking forward to being able to hang out more with him and other clients once the restrictions are lifted.

Wow, this turned out much better than I expected and it certainly did help.

What are you grateful for?

#WeekendCoffeeShare (February 6, 2021)

Hi everyone on this windy Saturday! Welcome to my contribution to the #WeekendCoffeeShare. It’s past 8:30PM, so I’ve long had my last cup of coffee for the day. However, I still have cold water in the fridge, as well as several flavors of soft drinks. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week went by relatively smoothly. I did struggle a bit early in the week because I felt guilty that the one-on-one support I’ve been getting lately isn’t helping me as much as I’d like. The staff reassured me that things have just settled down and I shouldn’t expect an instant great improvement. Besides, in a way, I am doing better than I was.

If we were having coffee, I’d tell you that I got some wonderful new essential oils. I got lavandin (which is like lavender but milder), lemongrass, ginger, clary sage and white fir. I am so happy about being able to make some new diffuser blends. I’d totally expected to sleep like a log because of the clary sage, but I didn’t. That’s okay though.

If we were having coffee, I’d share that I also finally purchased a talking scale. That way, I can weigh myself each week at the same time rather than relying on when I remember to ask a staff to weigh me. The scale wasn’t too kind to me when I first stepped onto it.

If we were having coffee, I’d announce that I got my first shot of the COVID vaccine on Thursday. It hurt a little more than the flu shot had, but the pain was over within the hour.

If we were having coffee, I’d tell you that my husband didn’t visit me today. We already established on Thursday that I wouldn’t be going to Lobith this week, because of the heavy snow and wind that’s been forecasted for tonight. We’re supposed to get up to 30cm of snow with a possibility of snow dunes. I originally thought snow dunes were the ones that would be 30cm high, but my husband said they might be up to a meter or even two. I can’t really imagine we’ll get this much snow, but I know how quickly it can come down indeed. Looking back, my husband could’ve come by for a quick visit this afternoon.

If we were having coffee, lastly I’d share that I made banana bread with my one-on-one staff this evening. We used just eggs, bananas and oatmeal for the batter and then added nuts, cranberries, dates and raisins. The other staff didn’t like the nuts in it, but I loved it.

Banana Bread

What’s been going on in your life lately?