Home Sweet Home

This week, Eugi’s weekly prompt is “Home sweet home”. I’ve never participated in this prompt before, but I thought I’d now.

Two weeks from now, I’ll be living in the care facility one year. It feels closer to home than any of the homes and facilities I’ve lived in before did. That feels weird. My parents’ house felt like home, but that’s just because I knew nothing else. My parents felt as safe as possible, but again that was because I knew nothing else.

Then I went into the training home. That was temporary, as you were supposed to live there for at most two years while training for independent living. That’s what I did eighteen months later. I cried my eyes out the first day, in front of my mother, who got angry with me.

It felt horrible to know that this was it forever. I mean, for at least the duration of my university studies, so four years, I’d live there. Then I’d live in a rented house on my own. It completely overwhelmed me.

As regular readers know, it didn’t last. Three months in, I landed in a mental crisis and was hospitalized. Though I stayed in the psych hospital for 9 1/2 years total and for over four years on one ward, it never felt like home. I knew it was temporary, after all.

And then I got kicked out. I lived with my husband in our rented house in the tiny village for 2 1/2 years. Even though I got by okay, it never felt good.

And now I’m here. I got that overwhelming feeling that this is it forever in the first weeks too, but this time, it was good.

I struggle to believe that this is not yet another temporary living arrangement or one in which I cannot cope. I act in and out a lot, probably to somehow “prove” that I’m not suited to this home. That I’m not suited to any home in the world. That there is no home sweet home for me.

Yet my staff so far say that I can stay here for the rest of my life. That, too, feels kind of overwhelming, but like I said, in a good way.

I also of course have my and my husband’s home in Lobith. That one still feels a bit odd to me. I never really lived in it, since we bought it two days after I moved into the care facility. In fact, I struggle to consider it my house too. When I write about it, I often write that it’s my husband’s house, then correct myself and add “and my”. I want to keep a connection to that house too, but it doesn’t feel like home.

Roles I Want to Play in the Future

A few weeks ago, I wrote a post about the roles I play. This post was inspired by the first prompt in the journaling workbook The Year of You. The second prompt is to write about the roles you would like to play in the future. Here goes.

1. I want to be a student. I don’t mean that I want to go back to college full-time. That place has been passed and I’ll never revisit it. However, I would definitely like to study at the Open University or some other distance-learning college again. I considered signing up for the developmental psychology course at the OU for this fall. I’m not sure I’m ready though.

2. I want to be a writer. Of course, I am a blogger already and I have one piece of mine published in an anthology. However, I really want to publish more. I’m not so sure I’ll ever write my memoir as I was some years ago, but some short pieces should be doable.

3. I want to be a volunteer. I really hope to do some type of community service, ideally putting my knowledge of disability and mental health to use. For example, maybe I’ll do a recovery course again and maybe in the future even lead one.

4. I want to be an advocate. I am already with this blog, but I really want to be more of a voice for the disability community in the Netherlands.

5. I want to be a crafter. That is, I want to be able to find a hobby that I enjoy. I no longer have it as a goal that I’ll be able to do it independently.

6. I want to be a guide dog owner. I really hope to be able to get a guide dog sometime in the future. I’m not sure that is a realistic goal, but I can dream, right? I mean, ideally, I’d have a psychiatric service dog/guide dog combo. That would be awesome!

That’s it so far. Last year, I might’ve added wanting to be a homeowner, but that goal can be crossed off.

What roles would you like to play in the future?

A Year Ago

One of Mama Kat’s writing prompts for this week is to look back at a year ago. Where were you then? What has changed and what hasn’t? Let me share.

A year ago yesterday, I had my intake interview and tour of the care facility in Raalte. We visited the sensory day activities group and snoezelen® room, as well as the home selected for me. At the home at the time was a respite placement for a man I knew from the day center I went to at the time. He greeted me excitedly: “Astrid!” He then went on to babble “respite fun”, “Mommy and Daddy vacation”, etc. I was shown around two rooms, one this man’s room at the time and one another client’s room. I think that client got moved to another room when I came and I now have his room.

Even though I had been invited on a tour of the facility, I didn’t know for at least another month that I had actually been accepted. The reason was that the staff all had to agree they could provide me adequate support and care, given that my needs are in some ways very different from the other clients’. They, after all, all have severe to profound intellectual disability.

Now, a year on, I’m settled nicely into the care facility. I didn’t get to attend day activities at the group they’d shown me. Now though, and for at least another two months, we get day activities at the home.

I think also around a year ago today, my husband had first seen the house in Lobith we ended up buying. I ended up moving to the care facility in the same week we got the keys to our new house. As such, a year ago today, I still lived in the tiny village rental house with my husband.

As I look back, I keep praising God that this whole COVID-19 thing didn’t happen last year. Even though the day center I attended at the time is slowly opening its doors again, community support is still mostly phone-based. I am forever grateful I got my long-term care funding approved last year.

In other news, the weather is drastically different now from last year. Last year, all weather records were broken with temperatures rising to 40°C. Now we’re lucky to reach 20°C and have a few hours of no rain each day.

How is your life different now from last year?

Mama’s Losin’ It

Decisions

This week, V.J.’s weekly challenge is all about decisions. V.J. is facing a decision regarding an opportunity to buy a house.

My husband and I faced a similar decision last summer. I had been approved for long-term care funding on June 4. This would mean higher costs for my care, as the copay for long-term care is several hundreds of euros a month, while the copay for community care is at most €19. This made our search for a house to buy more urgent. After all, mortgages are usually cheaper than is rent on a similarly-priced house. We had inquired about buying the house we were renting at the time, but the housing corporation had refused.

My husband did most of the visits to possible houses by himself, including the one to the house we ended up buying. This house was about the only house within our budget that wasn’t falling apart or being rented out for an undefined time. The latter of which is illegal, but that didn’t help us.

So my husband ended up choosing our house in Lobith. I was hardly involved with the paperwork, except where I had to be because we’re married. I was pretty sure I wasn’t going to live in this house for long anyway.

Similarly, my husband left all decision-making regarding the care facility I was going into up to me. Of course, this is in a way different, in that I’m a legal owner of our house and he’s not legally anything regarding the care facility.

I ended up moving to the care facility in Raalte just two days before we were to sign the contract on our house.

It’s indeed somewhat interesting that my husband and I leave each other so much room for decision-making regarding our own lives. Other married couples probably do much more shared decision-making. I don’t know whether it’s a good thing or not the way we do it. People have encouraged me to get more involved with the financial and legal aspects of the house. I’ve also been told my husband could (should?) be more involved with my care. But as long as we’re both competent adults, it works okay.

I’ve been thinking of making my mother-in-law my official decision-maker should that ever change in my case. I know my nearest relative would be my husband, but I want in any case to prevent my parents or sister from becoming my guardians. After all, I’m not too sure they truly would have my best interest in mind, though obviously they’d think they do.

2019: The Year in Review

Wow, can you believe 2019 is almost over yet? It was truly an eventful year. I want to do a review of the year. I originally intended on waiting till the 31st to do it, but I’m not sure I’ll have time for it then, as I’m celebrating New Year’s at my in-laws.

I had a theory when I was a teen that said life ran in cycles, by which every three years I’d find myself struggling significantly, then the next year would be one of hope, and the third year would be one of disillusionment, by the end of which I’d spiral into despair again. 2001, 2004 and 2007 were all years of despair, whereas 2002, 2005 and 2008 where years of hope. I didn’t continue to be superstitious about this past that point and honestly looking back each year was really a mixed bag. By this logic though, 2019 would have to be a year of despair. It was to begin with, but it ended on a really positive note, whereas by my teenage logic, the fall of the year of despair would be the hardest.

Well, let me say this year was extremely eventful indeed. At the end of 2018, we had just mailed out the application for long-term care funding. I started the year really hopeful by looking at a living facility and having my long-term care assessment in January. Then in February, I grew cynical. I decided everything wouldn’t be okay till 2021, as that would be the year people with lifelong psychiatric conditions would be allowed access to long-term care. I was right. My funding application got denied.

March, April and May were all largely months of waiting, as we sent out the appeal letter and my appeal was looked at. In late May, my support coordinator told me I would most likely not be granted long-term care funding this time either, but the lawyer in charge of my appeal was going to see if she could find a way to approve me anyway. She did somehow. I feel the long-term care regulations put people with multiple disabilities at a significant disadvantage. I remember writing blog posts explaining the legalities of long-term care back in like 2009 on my very first WordPress blog and I already felt the rigid care packages based on primary disability, were stupid. I don’t know how they managed to grant my appeal and even if I knew, I wouldn’t share it here.

By the time my long-term care funding was approved, my support coordinator had been informed that the care facility in Raalte with her agency had several available rooms. I started the intake process. By late August, just as I was losing hope again, I was told I would be accepted. I moved on September 23.

The past three months have been good. I feel a sense of calm, even though I still experience meltdowns. I had one tonight. Like a fellow patient on the locked unit said once, I can move around all I want, but I still need to look to myself for improving my own mental health.

When I looked at my review of 2018, I saw that my husband had been warming me up to us buying a house in his work city. I thought then that this may not happen if I go into long-term care, and indeed the house we bought isn’t in his work city. However, it’s still a house he likes. It is legally my house too, of course, which is good, in that I can move there if I ever get kicked out of long-term care. I also try to stay involved with renovation plans, but I struggle with this.

I took a look at my hopes for 2019 as I was preparing to write this review. I can be pretty satisfied with how I did on them. The only goal I didn’t meet, was to have a healthier lifestyle and lose weight. I’m doing okay on the healthier eating part, as I haven’t had binges much since coming to the care facility and make sure I don’t indulge into my every food whim. However, I don’t exercise nearly as often as I want to, though I get about as many active minutes as I did when living with my husband.

I did buy a new computer. Two, in fact, as I wasn’t happy with the Mac I bought and sold it to my mother-in-law. I am very happy with my current Windows PC though. Having a working computer again enables me to do so much more with my blog than I could when only using my phone. This helps me keep a regular blogging schedule too. Finally having found a feed reader that works in my browser, also helps. That was my only initial frustration with my current PC, as my Mac had a good feed reader and I struggled to find one for PC.

My last hope for 2019 was to stay mentally stable. I’m pretty sure I have reached this goal, as I’ve not been in serious crises at all. I’m also more than happy with how my staff handle my meltdowns or short crises as they do happen.

Key #SoCS

I have a key to my room on a keychain. I would originally get a key to the particular home I live in in the care facility. I ultimately didn’t end up getting one. This may be because there’s not been a need for it. I mean, I can’t go to day activities or whatever on my own anyway.

Another reason may be the fact that I ran off several times. The unit is semi-locked, in that you need to turn a particular key to be able to open the door to go out of the house. The other clients can’t work this key, so are in a minor way prevented from leaving the home.

I, however, can work the key. I didn’t know I could until one day in late October, I was in a crisis and needed to find staff. There is no-one on my floor from 10:15PM on, but there are call buttons and listen-in systems and such for people to call the night staff, who is responsible for the entire facility. Anyway, I tried to find help that particular time.

Another time, around three weeks ago, I ran off because my flight response kicked in. I worked the key again and let myself out.

After this, it’s been discussed to remove the key from the lock, so that staff need to open the door with their own keys and I won’t be able to elope on my own. So far, that action hasn’t been taken, presumably because the measure would be just for me (since no other client can work the key anyway). They probably think I’m responsible enough (or should be) to handle this freedom. I’m not sure how I feel about it.

I do also have a key to my husband’s and my house. The reason for this is more symbolic, as I never go to this house on my own. However, I like it this way.

This post is part of #SoCS, for which the prompt this week is “Key”.

#WeekendCoffeeShare (November 10, 2019)

As with Ten Things of Thankful, I haven’t joined in with #WeekendCoffeeShare in a long while. It’s late Sunday evening here, so my week-end is almost over. Then again, there’s still time to join in, so let me. I just had a drink of Crystal Clear, which is a type of non-carbonated soft drink. I hate carbonated soft drinks except for the very slightly carbonated drink called Dubbelfrisss. I haven’t had coffee since one o’clock in the afternoon, but if those who are in a different timezone (or even those in my timezone, cause who cares?) want a coffee, that’s fine by me.

If we were having coffee, I’d share that this past week has been filled with appointments. On Tuesday, I had a review at the care facility and on Thursday, I had the intake interview for mental health.

If we were having coffee, I’d share that the review went okay’ish. Honestly, I don’t remember that much about it, as the day activities staff seemed to be rattling off a list of changes they want to implement. That had me go “Whatever” only to melt down later in the afternoon when I saw what these changes were doing.

For one thing, the staff got shuffled around a bit so that my group has less staff available. That was a big change that caused me to go into panic.

Fortunately, the staff called for the behavior specialist to talk to me and they together were able to calm me down a bit. I still feel uncomfortable particularly with this specific staff. She’s leaving next week anyway, so oh well.

If we were having coffee, I’d share that my intake interview with the mental health team went pretty well. A staff from my living place went with me. This was comforting. At one point, a little came out, who reached for her hand. This felt good and the staff said that she was totally okay with it.

If we were having coffee, I’d share that tomorrow I have yet another appointment. I will be having an introductory appointment with the intellectual disability physician for my facility. I’m not sure what I expect out of it.

If we were having coffee, I’d share that I went home to my husband this week-end again. We had Chinese takeout this evening, which was good. Since my husband moved to Lobith six weeks ago, we haven’t had Chinese takeaway. It was much better, in my opinion, than the Chinese takeaway in Doesburg (near our old village). There, I’d pick it as a choice sometimes over other food vendors because you got loads of food, so it was essentially a huge binge I’d later pay for with bowel cramps.

If we were having coffee, I’d share that I had a nice walk with my mother-in-law and her dog Bloke this afternoon. We walked for nearly an hour, which was really good. After all, though I manage 30 minutes of activity most days, I’ve not had long walks in a while.

If we were having coffee, lastly I’d share that I’m now enjoying some of the liquorice my husband bought me at my request this afternoon. I’m being careful not to eat it all and trying to be mindful of my wish to actually enjoy the candy rather than stuff it all in at once.

What have you been up to lately?

#WeekendCoffeeShare (September 29, 2019)

Hi everyone, how are you doing? I have had a for me incredible amount of coffee for a Sunday today, so am feeling pretty energized despite it being nearly 9PM here. This evening though, I chose two cups of green tea and two apple and peach flavored soft drinks. Anyway, I’m joining in with #WeekendCoffeeShare again.

If we were having coffee (or green tea or a soft drink), I’d share that my transition into the care facility went relatively smoothly. I moved in on Monday. I do miss my husband, obviously, but am mostly enjoying my time being here. I feel, overall, a lot more relaxed than I did when still living semi-independently.

If we were having coffee, I’d share that the house-buying process was finalized last Wednesday. As I said in my previous post, the paperwork was somewhat stressful as I couldn’t read or sign the agreements due to being blind. That got sorted though thanks to a very accommodating solicitor.

If we were having coffee, I’d share that my husband has been very busy doing odd jobs in the new house. I muted the house-related WhatsApp group because, not being there, I couldn’t conceptualize what all was being done. However, I guess in a few weeks, I’ll like it in the new house. I saw it for the first time on Wednesday before we saw the solicitor and it’s larger than I expected.

If we were having coffee, I’d share that I’m excited for my husband to come over here on Thursday. He originally said he’d come by either MOnday or Friday, so since I hadn’t heard a thing yet, I assumed he was coming on Friday. Today he said though that, after the final inspection and handing in the keys to our old house, he’d travel my way. He said we could have lunch at an Australian restaurant that’s in a nearby town.

If we were having coffee, I’d share that I am totally in love with all the sensory equipment at both the day center and the care home. At the day center, there’s a snoezelen® room. I spent some time on Thursday lying next to the bubble unit and on Friday lying on the waterbed. At the home, there’s a room with a rocking lounger. The staff also retrieved a kind of teeter board from another client’s room. That client has a swinging chair that’s hers but I was allowed to sit in it in her room for a bit.

If we were having coffee, I’d share that the care facility food is pretty good. I got mashed potatoes twice this week, which is one of only a few things I truly can’t stand, but they were able to swap my meal with someone else who didn’t mind mashed potatoes. My husband would say I’m a pretty picky eater, as I also had instant noodles one day when we actually got spaghetti carbonara. I think I can make myself eat that though and I won’t put it on my dislike list unless it’s very easy to do so.

If we were having coffee, lastly I’d share that I did have a relatively good amount of physical activity this past week. I don’t have my elliptical yet, as my husband will be delivering it on Thursday, but I did go for some walks. I don’t use my Fitbit right now, as I can’t find its charger and I don’t want to be discouraged by it, but I do feel pretty good about my activity level. I am eating pretty well. Now I guess I do still get too many calories for the amount of exercise I get, but I will hopefully soon find ways around that. At least I haven’t really craved binge food much. Finally, I also made time to do mindfulness meditations most days.

How was your week?

First Few Days in the Care Facility

So I haven’t written in nearly a week. I wanted to, but on Monday, was still adjusting to being in the care facility. On Tuesday, I felt really off. Then yesterday my husband and I traveled to our new house, the house we bought, and to the solicitor to sign the paperwork. That was somewhat of a hassle, as I cannot make a signature that looks remotely like the one on my passport. So for this reason, the solicitor had two coworkers sign in my place. Thankfully though, the thing is now finalized and we’re officially homeowners!

My adjustment to living in the care facility has been harder than I imagined. On Monday, I did pretty well. Tuesday I started day activities. It was a good day weather-wise, so I was able to enjoy some time outside.

Then tuesday night I suddenly was overcome with shame about my care needs. It all makes me so confused, since if I truly function emotionally at a 16-month-old level, I probbably shouldn’t be able to feel shame. And yet I do. My father’s voice is in my mind like all the freakin’ time. So is my former psychologist’s.

Yesterday, my husband came to pick me up for the official stuff at 11AM. We returned to the care facility at around 6:30. I did okay other than obviously missing my husband. I rationalized that away though. He told me he was a little disappointed in how far the journey is from our new house to here. There will no doubt be a solution, for example me traveling to our house by train and ParaTransit taxi. Still, the conversation did upset me.

I’m constantly facing this bit of cognitive dissonance between the parts of me that are severely disabled and truly function at a young child’s level and the parts that can be married and have a normal life. I can’t and don’t want to disown either, but it’s a huge challenge finding the middle ground.

Besides, even if I wanted to, I can’t go back to my life before moving here. The old day center has a pretty long waiting list and they’ve most likely filled up my place by now. I don’t have a room to myself in the new house. I can’t go back to community support funding from long-term care. Now of course if I truly could disown the severely disabled parts of myself, I might’ve been able to find a solution to at least the last of these problems. Long-term care funding is available to those who live at home too, after all. Maybe I just need to admit that I’m too darn selfish to actually choose my husband over proper care.

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?