Saying Goodbye at Day Activities Again

I contemplated for a bit what to title this post. Seriously, I don’t hope next year will see yet another goodbye from day activities. I really hope I will be able to stay at the day center in Raalte much longer than I did at the one I left last year and this one. I know, I didn’t have to leave this center because the team or management no longer wanted me. I’m so glad I left knowing that the reason was mostly down to my own choice and circumstances.

So today I had my leave-taking party at day activities. First, we had French fries with a snack for lunch. I loved them. Most times I’ve gotten a choice of snacks, it was just between the two most commonly-eaten Dutch snacks. I told the staff I wanted a type of spicy snack called “mexicano” and suggested another client, who is non-verbal but about whom we know that she likes spicy food, might like it too. She definitely enjoyed it.

Then when having coffee break in the afternoon, I presented my group with “stroopwafels”, a type of Dutch caramel-filled waffle. I also gave each of the staff a small handmade soap. The staff gave me a large stuffed panda bear.

Then some clients and staff from other groups visited to say goodbye. I got a lovely huge card, the size of a small painting you can hang on the wall, from another group. It had a greeting in wooden tactile letters stuck on it. I also got chocolates. Another group gave me a card and two huge chocolate bars. Now my attempt at losing weight when I go to the care facility will have to be postponed a little

I do not know whether the clients on my own group will notice I’m gone. I guess they will, but most probably don’t have the words to ask about me. People from other groups have definitely been asking about me leaving for a while now and some say they’ll miss me. I will for sure miss them too.

Freewrite on My Transition Into Long-Term Care

Yikes, in less then a week, I’ll be in the care facility in Raalte. It’s exciting, but of course it is also scary. I have been planning on writing more about the transition. In fact, I have Mari L. McCarthy’s 22-day transitions journaling course. I had it already before I moved in with my husband, but never quite used it then. I’m not sure I’ll use every prompt this time either. The day 1 prompt is to freewrite on your hopes and fears and such re the transition. Here goes.

I’m really excited to go into long-term care. I’ve been looking forward to it for almost a year. However, now that it comes close, I’m second guessing myself.

I mean, am I not happy with the situation as it is now? The honest answer is “No”, but does that relate to the situation or to me? As a fellow patient on the locked ward once said, you take you everywhere. As such, I need to be really clear that I’m not just depressed because I suffer with a mental illness. I need to separate what is my depression that just is from what is my unhappiness with living semi-independently.

Besides, am I truly unhappy? My husband said this time in my life was perhaps the happiest for me, judging by his observation, since he first met me in 2007. Then I must counter it’s perhaps the least unhappy time period in my life.

I really hope I’ll be able to have a happier life living in long-term care. I know I often feel very depressed when alone and that’s not a time my husband sees me. The times I have no-one to rely on, will most likely lessen a lot, but having my own room means I’ll still be able to have alone time.

I fear, however, that I’ll be understimulated in long-term care. One of the things the behavior specialist from the blindness agency wrote in her report on me from observing me at day activities, is that the activities are not challenging. I do simple puzzles, construction play and such. If that’s all I’ll be required to do at my new day activities, I’m sure I’ll get bored. Part of me says that we’ll find a way to deal with this and that I need to be content to get the care I need. Another part says that I shouldn’t stop desiring stimulating activities just because I am in long-term care.

I also fear that going into long-term care will be a slippery slope. My father’s voice is in my mind, saying I manipulate the world into giving me care. If he is right, going into long-term care will just make me lose skills, become more dependent and ultimately need a lot of one-on-one support. It may lead to backlash from the care facility, causing me to get kicked out again.

I will, of course, also be missing my husband. I can deal with it, but it’s sad. I’m scared that he’ll grow tired of visiting me every week because of the long drive (nearly 90 minutes one way). I don’t want to lose my husband. I said, when originally falling apart in 2018, that I would choose him over long-term care if I had to. I don’t really need to choose, as we’ll still be seeing each other, but what if I do? Will it be too late to choose him? I hope not.

Confessions of a New Mummy

#WeekendCoffeeShare (September 15, 2019)

Hi everyone, how are you? Let’s catch up over a cup of coffee or once again green tea in my case. I’m joining in with #WeekendCoffeeShare.

If we were having coffee, I’d share that this week was full of ups and some downs, though the downs weren’t as low as I’d expected. As regular readers of this blog know, I will be moving to the care facility in Raalte in eight days. My staff, my husband and I have been doing some preparation in regards to my leaving my current day activities and going to start up in Raalte.

If we were having coffee, I’d share that I finally told my mother I’ll be going to the care facility. I sugarcoated it a little, saying I’d be staying at my care agency in Raalte during the week and going home to my husband on week-ends. As a result, at first she wasn’t sure I’d be actually sleeping at the care facility. After a little “but I thought you were doing so well” and all, she wished me good luck at the place.

I am not 100% sure how to feel about it. In a way, this seemingly supportive attitude contradicts my memories from years before and that is hard to adapt to. However, I’m trying to be gratefulfor her support. I haven’t talked to my father or sister about it yet.

If we were having coffee, I’d share that my sister gave birth to a baby girl, Janneke Sietske, last Tuesday. She is named Janneke after my sister’s and my grandma who died last year and Sietske after one of my brother-in-law’s grandmothers. Janneke had some health issues early on and we haven’t been able to visit yet. We’re planning on visiting her next week though.

If we were having coffee, I’d share that today, my husband and I made some small banana soaps for the staff at day activities. I’ll give them to them on Friday, when I have my leave-taking party.

If we were having coffee, I’d share that my last appoitnment with my nurse practitioner went okay. He has referred me to the mental health agency in Raalte. I haven’t seen the referral letter, but he said he’d written about my trauma but that, for now, here and now work is most appropriate for me. I did try to get it through that ultimately, I do want to process my trauma. I’m not sure that will happen, as most likely I can’t get trauma therapy without at least a C-PTSD diagnosis if not DID/OSDD. Precisely getting my trauma-related issues assessed is a huge trigger for me.

If we were having coffee, lastly I’d share that I finally finished The Fault in Our Stars, which I started reading already three weeks ago. I will hopefully be able to finish at least one more book before the end of the month.

What’s been up with you lately?

Gratitude List (September 7, 2019) #TToT

Hi everyone! I’ve been wanting to write a lot today, but somehow, I once again couldn’t find the words to write a proper blog post. This week was a good one in some major ways, but it was also a very stressful one. To focus my mind on the positives, I’m joining in with Ten Things of Thankful (#TToT).

1. The sensory room at day activities. I have been relaxing in it a lot lately. There’s a guy who uses it often, but he was off this past week, so I took full advantage of the available room.

2. Tranquilizers. On Tuesday, I was very irritable. I am so glad that the staff offered to give me my lorazepam and it worked.

3. Great news from the care facility, of course. I got to speak to the behavior specialist and support coordinator, which was good. It was great to hear that I will most likely be moving by September 23.

4. Hearing more about the house we’re buying. We got a go on the mortgage and are now waiting to get the keys.

5. My husband having been able to change the days he’ll be off work. He would originally have the week of September 16 off, but since I’ll be moving to Raalte on the 23rd and we’ll get the keys to our house most likely on the 25th, that wasn’t ideal. My husband will now have the week of the 23rd and the week of the 30th off.

6. Nice food. To celebbrate the great news about my moving to the care facility, my husband got us pizza and a tompouce (a Dutch pastry) on Tuesday. On Thursday, I was stressed, so I bought myself a lot of snack food. Still, I enjoyed it.

7. Horseback riding again. Yesterday marked my first riding lesson after the summer break. I rode Morritz again. I didn’t ask about Angie, the horse I previously often rode, who was injured some six months ago. As the weather was relatively good, we rode our horses outside.

8. My stuffed bear. I had a lot of nightmares and vivid dreams this past week, so I am all the more grateful for the stuffed bear my mother-in-law won for me at an animal shelter event last year. I have a ton of other soft toys, but this one is the biggest.

I am also grateful for the extra duvet my husband laid over me some nights back when he realized before me that I’d otherwise feel cold.

9. Painkillers. I’ve been having a toothache lately and had a headache yesterday. They may or may not be related. And yes, my father-in-law is a dentist, but this makes me more wary of going to the dentist (him) with this. Thankfully, paracetamol has been working.

10. My amazing fellow clients at day activities. A new girl started yesterday. She’s nice. So are the others. Most don’t understand that I’ll be moving, so I haven’t told them yet. I’ll be missing them.

What have you been grateful for lately?

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.

#WeekendCoffeeShare (August 18, 2019)

It’s Sunday. This usually means I’m joining in with #WeekendCoffeeShare. I didn’t last week, because I couldn’t find the time amidst reading and writing other posts. Today though, I’m joining in again.

I am full from all the French fries and snacks I had this evening. I don’t think I can manage to drink a cup of coffee or even green tea right now, but if you’d like one, grab a cup and let’s catch up.

If we were having coffee, I’d ask you how your week has been. Mine has been a truly mixed bag. I felt rather stressed out at day activities a lot of the time, particularly on Tuesday and Wednesday. On Tuesday, a staff who would’ve been in charge of one group by herself was off sick. For this reason, the clients of that group had to be divided between the other groups. Besides, the staff who was sick, ran the kitchen group, so we had to do our own dishwashing and all. This was all a bit chaotic and I felt very off most of the day.

Then on Wednesday, we had an argument with one of the staff. She was trying to make me go to a rather useless fitness course. I had been dreading going to the course for weeks. I don’t think it’s a bad idea to have a fitness course at day activities, but it involved meditation and information about nutrition and health. No problem, but all my fellow clients are severely intellectually disabled. I don’t think that they have no right to benefit from this class if they feel it’s worth it, but I felt it didn’t fit me.

Thankfully Friday was better and we had a lot of fun.

If we were having coffee, I’d share that yesterday, my husband drove all the way to Schiphol airport to find a bank that was open on Saturday past 2PM, so that we could make the final arrangements for our mortgage on the house we settled on. This merely involved showing our IDs so the bank knew we were who we said we are. Then only the people at Schiphol were too busy to help us. It’s understandable that banks need you to physically show up with your ID before they serve you, but then it sucks that this can only happen during office hours. Officially we’d even have to show up together, but my husband found a way around that. Now my husband is going to try to drive by the bank in one of the cities he has to go to with his truck tomorrow and I’m going to the nearest bank with my mother-in-law on Wednesday.

If we were having coffee, I’d share that we had fries each day of the week-end. We always get ourselves fries on Friday. Then yesterday on the way back from Schiphol, we found ourselves a nice restaurant to eat at. I had a huge burger there. Then today, my father-in-law is visiting us (he’s watching TV with my husband right now) and he brought fries too.

If we were having coffee, lastly I’d share that I’m not as inspired or creative anymore as I was last week. Then I spent all the time actually doing sort-of-useful activities, including reading, blogging and such. Now I’m still not totally passive, but I”m feeling a slightly lower mood coming on.

How have you been?

Gratitude List (August 16, 2019) #TToT

Yay, it’s Friday! I’ll have to get up relatively early tomorrow for an appointment at the bank in relation to the house-buying process. However, I’m still happy to have the week-end in front of me! Today, I’m joining in with Ten Things of Thankful (#TToT) for this week.

1. A long walk with my mother-in-law and her dog on Sunday. We walked for nearly an hour. Then we had another 25-minute walk yesterday.

2. A tidy closet. My husband helped me tidy up my closet last Sunday and it’s a lot more manageable now.

3. Hamburgers. Sunday night, I had been awakening my husband several times by talking in my sleep. Something about buttons I really, really had to press. Don’t ask me where I got that. Anyway, it led my husband to suffer lack of rest and he didn’t like to cook the next day, so he cooked up some hamburgers.

4. Ice cream. On Tuesday as the ParaTransit bus driver drove us home from day activities, we came across an ice cream truck that was handing out ice cream to all clients at the institution for people with intellectual disabilities where several of us had to get off. The staff said the driver could get himself and us remaining people on the bus an ice cream too. It was totally yummy!

5. Singing “Happy birthday”. As of last month, I attend day activities for the whole day on Wednesday rather than just the mornings. In the afternoon, we usually get music therapy, but the therapist had been on vacation until last week. I so far love love LOVE music therapy. Because this week, one of my fellow clients had a birthday, we sang birthday songs. I sang “Happy birthday” in English by myself for him.

6. No rain when my support coordinator and I went for our walk yesterday. It was supposed to rain all day, but thankfully it didn’t then.

7. Reaching my step goal yesterday. I’ve not had a great week as far as activity goes, but at least yesterday I did make it to 10,000 steps.

8. The staff taking me on a short walk today. This particular staff member had been on the receiving end of an aggressive outburst of mine (thankfully I wasn’t physically aggressive towards her) because I had been confused about being told I had to attend some boring health and fitness course rather than going for a walk on Wednesday. She somehow remembered having promised me a walk later in the day and then forgot. She hadn’t promised it, but this makes me all the more grateful that she did take me on a walk to make up for it today.

9. WordPress still being there. I got some scares recently about people abandoning WP en masse over the Tygpress thing and going to Facebook or whatever. I tried to create an FB page for my blog today, but seem to be failing miserably. I’m so glad for this reason that most bloggers are still on WP.

10. Lovely comments on my blog. I’ve had a lot of blog visitors and engagement with my blog posts this past week. It is awesome!

What have you been grateful for lately?

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!

Gratitude List (July 27, 2019) #TToT

I haven’t participated in #TToT in forever. Today, I’m wanting to join in once again. I recently joined their Facebook group too and I promised to be active then. So here are the things I’ve been grateful for lately.

1. A lovely walk on Monday. We got a heatwave here, so for most of the week, it’s been impossible to exercise or go outside much at all. It’s summer break, so the intern who normally takes me on the weekly walk, isn’t there. Thankfully, the staff decided they can have me join in the walk anyway.

2. My computer behaving as it’s supposed to. I got a new PC a few weeks ago and sold my Mac and overall, I’m so happy I did. It took a little getting used to trying to figure out E-mail, feed readers and such, during which time I spent $36 on a feed reader that wasn’t ideal. Then I finally decided that if I just accept that I’ll need to use both Google Chrome and Firefox regularly, I’ll do fine with my old friend (no pun intended) The Old Reader. It after all works fine in Google Chrome, but Facebook doesn’t. Now I’m just so delighted I have a Windows PC again.

3. Having been able to save more money than I expected. I will probably soon get a bill for €140 a month or more in copay for my long-term care. My husband offered to contribute more to our monthly bills so that I do not have to be responsible for cutting the full amount of money, but I’ll still need to save some. As such, I’m so delighted that I saved over €100 more than I’d expected during the month of July.

4. My husband and I probably buying a house soon. We placed an offer on it last week and, after some negotiation, reached an agreement on the price. We’ll soon sign the draft agreement and hopefully be house owners by late September or early October.

5. Having gotten through the worst of the heatwave. It was boring at day activities, because I couldn’t go outside. Then again, I made it through and did okay. I made sure to drink enough water. As a side note, my autistic perseveration side does love the weather records that were broken.

6. Peaches. I bought some with my support worker on Thursday. I love summer fruits, but blueberries are too expensive for my budget now.

7. One-on-one time with a support staff at day activities on Friday. She had to return a walker to another day center that they’d been trying out for another client. She offered to take me, so we drove to the other day center, then to a hotel to have a drink at its restaurant. She told me to have something to eat too, so I chose tiramisu. My husband’s tiramisu is better, but still it was a great treat.

8. The weather being slightly cooler now. Like I said, all heat records were broken on Wednesday and Thursday and, though it’s still pretty hot, I’m enjoying the slightly less extreme temperatures now. Mind you, it’s still supposed to have gotten to 30 degrees Celsius today, but it feels almost cold now that my husband just opened my window. (I can’t open or close my window because I can’t reach that far.) Phew!

As you can see, I didn’t get to ten things to be thankful for. I blame this on the heat and my brain melting away. I hope you’ve all been grateful lately.

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.