#WeekendCoffeeShare (June 14, 2020)

Happy Sunday afternoon everyone! I’m joining in with #WeekendCoffeeShare. I think I just ate all of the cheesecake that one of my staff brought for her birthday yesterday and I think the other residents ate all the cream cake she’d brought too. I guess we still have lots of cookies though. Have a cup of coffee and a cookie and let’s catch up.

If we were having coffee, I would rave once more about the smoothie maker a staff brought me on Monday! I have been making smoothies almost everyday since. Yesterday, I made one with frozen blueberries in it for my husband. Its color was a bit grey or so my husband said, but it tasted good. Unfortunately, the staff left the blueberries in the fridge rather than the freezer, so we had to use them all up today.

If we were having coffee, I would tell you how much fun I’ve had with this staff member. She’s returning from long-time sick leave, so is slowly building up her hours again. This means sometimes she just comes as an extra staff to do fun things with us. Like, on Friday, she helped another resident and me make cards for a staff who just earned her carer diploma. We also played a game using a mallet and nails, in which you have to slam wooden blocks into a piece of cork. Normally the wooden figures are really relatively thin, so I don’t have the coordination to do it properly, but these were actually thick blocks.

If we were having coffee, I would tell you that I had a nice phone conversation with my former support coordinator. She was really nice. Like I said on Friday, I’d half assumed she no longer knew who I was, but she definitely still remembered.

Like I said on Friday, she told me my staff have been thinking of applying for more care for me. This did make me feel a little scared, as last year the application for long-term care was really hard.

Yesterday, I reread the application and indeed, some things are more severe now than my staff thought they were back then. This has me feeling all sorts of things. Isn’t care supposed to help me be more independent? Well, the goal for me is stabilization, not development, but yeah. My inner critic is shouting at me, but I try to shut her up.

If we were having coffee, I would tell you that I’ve been experimenting with my new phone’s camera. I’ve been taking random pictures of my room. I haven’t had a staff check them yet, so not sure they’ll ever go on my blog, but oh well.

If we were having coffee, lastly I’d tell you that I got a Netflix subscription again yesterday. I’ll just try it for a bit and then may unsubscribe again, but I wanted to see the Netflix original Diagnosis. This, like the book by that title I’m currently reading, is based on Lisa Sanders’s New York Times Magazine column on hard-to-diagnose medical conditions. It’s very interesting.

What have you been up to lately?

Gratitude List (June 12, 2020) #TToT

It’s Friday again. I’m still feeling pretty off. I have a lot on my mind, but rather than dwelling on it, I’m going to write a gratitude list. I’m joining in with Ten Things of Thankful (#TToT) again.

1. Bookshare. This is a service that provides accessible eBooks to people with print disabilities. It costs $50 per year and my husband just renewed my subscription. I love it! Not all books are available internationally, but enough are that I enjoy the service.

2. Smoothies. A staff gave me a smoothie maker on Monday. I already had a blender, but this one is a bit smaller and comes with its own screw-on drinking bottles. I have been loving making my own smoothies! Particularly, I loved one with apple, cinnamon, almond milk and oatmeal.

3. Tacos. Or Tortillas or whatever these particular ones are called. We made those at day activities yesterday. We filled them with lettuce, chicken and pesto. My husband commented that pesto isn’t supposed to go on a wrap, but whatever.

4. Crafting a bit. The same staff who brought the smoothie maker, came again today and did some crafting with me and another client. We made some type of cards for a staff who earned her carer diploma recently.

5. Lots of steps again. I reached 10K steps each day this week except for today.

6. My former support coordinator. I texted her yesterday, half assuming she had deleted my contact info and wasn’t sure who I was anymore. Not so though. She offered to call me and we spoke for a bit.

7. My current staff. They are absolutely taking my care needs seriously. One thing I found out through my former support coordinator is that they’re considering applying for a higher care profile for me. This has me feel all sorts of things that I can’t describe on my blog in case someone from the funding authorities reads it. Particularly, I was scared this would mean a whole new long-term care assessmment, which would mean a risk of losing my care. My support staff did reassure me though.

8. My community psychiatric nurse. I tried to call her through the mental health agency’s secretary this afternoon, but the secretary had their automated lunch-break message on long past 1PM. I E-mailed my CPN and thankfully she got from my message that I wanted a call despite my not actually having asked her for one. She helped me process some of my feelings.

This is it for now. What are you grateful for?

Mother As Place of Attachment

It’s already been eighteen months since I last wrote about what I read in The Emotionally Absent Mother. Still, the book hasn’t just sat there. I struggled to move on from Mother As Source. The next section is titled Mother As Place of Attachment. Somehow, this is a really hard section. I don’t really know why. I mean, yes, part of the reason I struggle to move on in writing about this book, is that I do it publicly and what if my parents read this? Then again, I don’t really care. I’m in groups on Facebook for childhood emotional neglect and emotional abuse survivors too. Though the member list of private groups isn’t available to non-members, I’m pretty sure they know somehow. Honestly, regarding this, I care more about my husband’s opinion than my parents’.

But there’s something specifically about this section that is hard. I’m not even sure what. Maybe it’s just that I don’t have a lot of early memories of my mother. I attribute this to my father being the homemaker and primary caretaker in our household. But fathers can “mother” too.

The first question asked in the section on your mother as place of attachment, is to rate your sense of connectedness to your mother on a scale of 1 to 10. The next question is how your sense of connectedness evolved over the years.

Well, with my mother, I am generally at a 5. I don’t feel she “gets” me, but we do get along okay. Like I said when discussing mother as source, I don’t feel that I’m made of her, but she isn’t from another planet either. Or maybe she’s from Venus. I mean, we’re not constantly disconnected.

Over the years, my sense of connectedness to my mother has stayed the same. I never quite felt like we had a strong bond, but I didn’t feel totally alienated either.

My father is a different story. We had a strong connection, maybe around 8, when I was a child. Now we’re at a 3 at best. Like I said in my mother as source post, as a child, I saw my father as the embodiment of intelligence, success and well what other positive characteristics are there really? When I got to question his having sole ownership of the truth at around age 15, things started to change. Or did things change earlier on? I’m not sure.

Another question is about bodily contact. This is where I get to question whether the schism occurred earlier than age 15. When I was a young child, my father definitely did give both my sister and me lots of opportunities for bodily contact. I remember when my sister and I were little, my father would wrap us in a towel and drag us to our bedroom. He called this “swordfish” and my sister always asked for “sordsish”.

My mother says that, around age 7 or 8, I stopped wanting to sit in my parents’ lap. From then on, bodily contact like hugging or good-night kisses was very ritualistic. I remember around age 11, being forced to read a certain number of pages in Braille if I wanted a good-night kiss. This at the time felt very distressing. I haven’t studied emotional development except in the context of intellectual disability, so I have really no idea whether it’s normal to still want good-night kisses at that age. I guess not.

As a side note, I did initiate physical contact such as hand-holding with practically every adult until I was at least 12. In my psych eval report from age 11, the ed psych notes that I claim not to need a cane but grab her hand immediately anyway. That first bit was no doubt related to my difficult accepting my blindness, but I don’t think the second bit is fully. Even as an adult, I truly crave physical contact and am a bit indiscriminate in who can give it to me. I mean, I am pretty clear that no male staff can provide me with physical comfort (or help me with personal care). With regards to female staff though (and the entire current staff of my home is female), I do accept physical comfort. I honestly don’t know how my husband feels about this.

PoCoLo
Keep Calm and Carry On Linking Sunday

#WeekendCoffeeShare (April 12, 2020)

Happy Easter Sunday to everyone. I am once again joining in with #WeekendCoffeeShare. I just had some decaf and right after that had the only fizzy drink I like, called “Dubbelfrisss”. It is only slightly fizzy though. Have a drink with me and let’s catch up.

If we were having coffee, I would ask all my fellow #AtoZChallenge participants how you’re doing on the challenge. I am so far doing pretty well. The J and K are always hard letters for me, but as you can tell, I found a word for the letter J. I am almost decided on my letter K post too.

If we were having coffee, I would tell you about all the fun the littles (inner children) have had reading jokes and free stories. We are a member of an E-mail list called Laughing_Place, but rarely even read the E-mails sent out until this past week. We laughed out loud at some of the jokes. As Milou said, the littles also had lots of fun going on a seesaw. We went on it again on Friday.

If we were having coffee, I would tell you that I got a lovely Easter card from a woman who lives at another home in our care facility. We can’t see each other much now that the day center is closed, but I talked to her from across her fence.

If we were having coffee, I would tell you about the blog upgrade I purchased. I have the Premium plan now. As you may be able to tell, I now have my own domain and all WordPress.com ads should be gone. I also got Google Analytics, which I’m having a love/hate relationship with. I’m pretty unsure about all the technical design stuff I can do now, as I’m not tech savvy at all. I’m still not entirely sure this was a wise purchase, but so far I’m not regretting it. I might once the 30-day refund period is over though.

I am thinking about starting my blog’s Facebook page back up. This upgrade also comes with cool social sharing options, so I’d bettter make use of them. I want to get a cover photo for my FB page then though and would love a logo for my blog. Any ideas are greatly appreciated.

If we were having coffee, I would share that I reached my daily step goal certainly on both Thursday and Friday and probably on Wednesday too. However, then my Fitbit wouldn’t cooperate, so it says I got 33 steps only. I in fact got nearly 13K steps on Thursday and nearly 12K on Friday.

If we were having coffee, I would tell you that I made a soap for a staff who’s leaving in a week or so. She is a substitute for someone who’s on maternity leave and that other staffer will return on the 21st. The soap is a butterfly that’s been scented with lavender fragrance oil.

If we were having coffee, lastly I would tell you that there’s a new client at my home. I’m struggling a bit with it, but she seems nice.

What have you been up to lately?

A New Client Came to Our Home

Trigger warning: mentions eating disorder behaviors
So a new client came to our care home yesterday. It was completely unexpected also to the staff. They didn’t hear she was coming till Friday evening. She has some form of brain injury, dementia and she broke her hip, which is why she had to come here. She lived independently until this. She seems okay, but due to her dementia she needs a lot of support. This did upset some of us, particularly Rachelle. It completely wrecked with her sense of structure and also the trust she had in the staff.

Today we had an Easter dinner. We had had the choice between pizza or fries. We chose pizza, but weren’t sure about it after all, as everyone else got fries. This further upset us, particularly Agnes. Agnes was feeling off, so she wanted to binge, but the staff prevented her, saying she was full already. This led her to a teenage tantrum.

Then once we talked to her about the importance of sticking to a somewhat healthy diet, she wanted to purge. Thankfully we were able to talk her out of it. Then however Rachelle took over again, with me (Eleanor) being present too. We were able to articulate our feelings to some extent.

Part of the problem is Agnes wants to be independent and make her own choices, including unhealthy ones, but Rachelle really needs more support than we’re currently getting. Thisdispute between them was also triggered by the new client getting pracctically one-on-one support all day, while we were in our room by ourself a lot. There is an extra staffer for the new woman, but we still feel like a burden.

We talked to our assigned staff about maybe making some form of communication cards that don’t require speech, so that Rachelle (and others) can ask for help when we can’t quite talk. We also talked about us getting a more structured daily routine particularly on week-ends.

We’re not sure this will help, but we’ll see.

Eleanor with some others chiming in here and there

Thankful Thursday (March 26, 2020): My Staff’s Approach to a Meltdown

Today I’m having a really hard day. I found out this morning that my husband is not allowed to visit me for the duration of the COVID-19 situation. Only in exceptional cases such as when you’re terminally ill can you have a visitor. Well, I guess I’m grateful I’m not in that situation.

During this time of day activities at the home and the chaotic situation that ensues, I’m struggling a lot with basic mistrust. As I explained to my staff, including the behavior specialist, some weeks ago, I’m finding that I experience a lot of distress due to past trauma. I’m pretty sure I suffer with significant attachment issues and am acting those out towards the staff now that I’m beginning to feel slightly safe. I mean, there’s a part of me who says that if the staff truly know me, they’ll kick me out of here or abandon me in some other way. I guess this part is giving the staff a hard time because they’ll ultimately abandon me anyway so I’d better push them away first.

As such, this afternoon, I had a major meltdown. I was watching a video on the Center for Consultation and Expertise website about a man with mild intellectual disability who had a lot of challenging behavior. The way in which I could relate to him, triggered me. I tried to tell my staff, but couldn’t and then I threw a glass to the ground.

Now here comes the reason I prefixed this post with Thankful Thursday: my staff were amazing about it!

My assigned support worker, who happened to work on my side of the home today, called another home for a staff to come over. This was a staff who had also worked in my home previously. She hugged me and took me to my room to talk while my assigned staff cleaned the mess.

This did further trigger me, but it was a good trigger. I mean, in the psychiatric hospital I would’ve been secluded or kicked off the unit and basically abandoned. I had tears of gratitude and sadness at the same time because of how lovely my staff handled this situation. My assigned staff even said maybe we should watch the video together sometime so that I could point out in which ways I relate.

Now here’s hoping my behavior won’t escalate further. After all, then I may in fact be abandoned. My inner critic still says that I’m making up all the factors behind my challenging behavior and it’s all just attention-seeking and abandonment is exactly what I deserve. Regardless, I’m so extremely grateful for my staff!

Gratitude List (February 8, 2020) #TToT

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)

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?

Worrying: Will I Be Kicked Out of the Care Facility?

I have had a lot of dreams in which I was kicked out of the care facility lately. They’re no fun. I don’t know why I have these dreams. I mean, yes, a new client may come to my home, but I didn’t find out about that until today. Besides, my staff say it doesn’t mean I’ll have to leave. After all, there’s still an available room in my home.

Still, it scares me. I worry that, if this other client needs a lot of support, I will not get my needs met. I mean, not because of this other client, but because staff will be busier. Oh my, this sounds incredibly attention-seeking. I don’t want to need more support than I can get.

And what if this other client is very noisy? He’ll most likely be assigned to the other communal room than the one I’m assigned to. However, I think he’ll attend my group at day activities, which is already very crowded and noisy as it is. I was told they had many more clients before I came, but well, then this place wouldn’t have been suitable to me.

I talked about my worries to my former support coordinator on the phone. She told me these are just my thoughts and there’s no reason I’ll have to leave because of this other client. Then again, I didn’t get to elaborate on my worries.

I don’t want to be seen as needing too much. I was often seen as needing too much. Either needing too much or claiming to need more than I got. The two are different. The people at the first day activities I attended with this agency, truly thought I needed one-on-one support most of the time, which isn’t even what I was asking for. The staff on my last psychiatric unit thought I needed little care but was just demanding a lot out of some feeling of inadequacy that was apparently unfounded. Either way, I was asked to leave the place. With the psych ward, things were a little nastier than with the day center, but the result was the same.

I saw the behavior specialist who worked for that first day center today. That fueled my worries even more. I mean, she was extremely supportive, but didn’t really know how to handle my issues either. Then again, she never got to talk to me beyond the one time when she made sure I got transferred from the industrial activities group to the sensory group. That was a good move, but when it didn’t fully work out, I guess the manager stepped in and said he’d been accommodating enough and I would have to leave. That’s what I think will happen here too. I mean, my staff are very accommodating, but what if it isn’t enough? Will we find other solutions? Will I get even more accommodations? Or will I at some point just be kicked out? I’m very unsure and that worries me.

Another Crisis

As those who’ve been following along with my writing will know, I was in a bit of a crisis on Monday. Tuesday and yesterday were better, but today was bad again.

It started out with a horrible nightmare last night. I still can’t shake the thought that I’ll be kicked out of the care facility sooner or later and that was what the nightmare was about. I woke up all sweaty and fearful. I called the night staff to calm me down.

Then by mid-morning, I felt rather insecure. My day activities group is divided into two subgroups. There are three full-day staff for these two subgroups combined, plus one staff who has the short 10AM-2PM shift. Today, one of the three staff who would otherwise stay the entire day, had the short shift too. I didn’t mind as much, as still each subgroup would have one staff for the full day. Then one of the regular staff, who would stay the full day, had to attend to a client one-on-one. The would-be third full shift was a sub, so she needed help doing lunch. So at the end, my full-day staff ended up helping her in the other room and the short-shift staff was attending to my subgroup on her own. She had to help people get around, to the bathroom, etc., too, so I was feeling rather left out. Everything went a little chaotic and that led me to enter the orange phase of crisis prevention.

There are three or four phases: green for adequate coping, yellow for mild distress (this one is sometimes left out), orange for serious distress and red for crisis. I was eventually able to go back to yellow as lunch was served and I ate.

Then I wanted to go into the snoezelen® room to further calm down. However, the music, though it was my favorite calming record, was way too loud. After some time, I ended up having a severe meltdown. I wasn’t able to calm down once back at my group.

In the end, I decided to take a PRN lorazepam and go back to the home to lie on my bed. I slept for two hours straight. Now I’m back to green again.

I’m joining in with #FOWC, for which the prompt today is “Crisis”. The prompt couldn’t have come at a more appropriate time.