It’s My Choice

Posted on by Astrid

Yay, I got accepted into a living facility. The one in Raalte that I visited about six weeks ago. I will hopefully move before I’d otherwise move to the house my husband and I are buying in October.

It is mostly very exciting. I love the place and am really glad that the physician, psychologist and the team all agreed that I’d be a good fit for the place.

But… There is of course a but. I haven’t told my parents yet. I told them I got long-term care funding, but told them it makes it possible for my husband and me to live together wherever we want, not being restricted by our local authority. It could do that too, but that’s not the plan. And I didn’t tell them I’m moving into a care facility.

They will hopefully say that it’s my choice. That’s the best response I can get. Not that they support me, but that it’s my choice and I’m an adult so I’m allowed to make that choice. After all, they still feel I don’t need 24-hour care. They still feel that I’m just blind and extremely intlligent and using my IQ to manipulate the world into providing me care.

Well, so what? Of course, I don’t want to be manipulating everyone into providing me care. I don’t want to be a little attention-seeker who thinks the world owes her a living. I wish I could snap out of my need for care and live a successful life by non-disabled standards.

At the same time, maybe if I didn’t care that I’d have to be sedated to the point of sleeping all day, I could do with less care than I’ll be getting in the living facility. As someone once asked, how can you literally need 24-hour care, since you’re (hopefully) sleeping during the night? This person was by no means trying to suggest that sedation could lessen my care needs, for clarity’s sake, but it could. And I’m making a choice not to sleep the day away. If you think that’s me being manipulativve, fine by me. That’s your choice.

I am writing this post for today’s Daily Addictions. The prompt is “Choice”.

#FOWC: Diet

Posted on by Astrid

Today’s Prompt for #FOWC is diet. I have no experience following any diet. Not even a “No-Diet” diet such as Slimming World. I know, I do need to lose weight. I do need to moderate my food intake. I do know that Slimming World, Weight Watchers and the like can help some stick to a habit of moderation where it comes to food. However, I’m not sure I’m ready to stick to the diet.

I really want to stick to a plan where it comes to food, but I don’t want it to become an obsession. And, honestly, food can quite easily become an obsession, because in my thoughts, it already is.

I think I need to allow others some control over my food intake. It may be best if I take full responsibility, but given how badly my overeating can get, I don’t believe that’s realistic right now.

I hope that, once I move into supported housing, I will have a more structured day where it comes to my meals and snacks. I really hope I’ll subsequently be able to eat less. After all, whichever diet you follow, that’s the real deal.

My husband and I were talking about a care facility that wants me, and he asked whether they have side-by-side bikes. I think they do. They certainly do have a stationary bike. We were discussing getting rid of my elliptical, because there’s not enough room in our new house to put it if I only use it on week-ends. I was thinking of taking it to the care facility. Maybe they can use it at the day center that’s near the living facility. That way, I’ll still be able to go on the elliptical.

I, after all, didn’t say I would never lose weight again. I do want to, but now is not the right time. Then when is, you ask? Well, like I said, I’m genuinely hoping that, once I go to the care facility, I will be able to stick to a diet and exercise plan with the help of my staff.

Where #SoCS

Posted on by Astrid

Where am I going? Where am I even right now? Yes, I am currently at home, writing this blog post. I go to day activities four days a week and spend the rest of the time at home or at my in-laws. I don’t blog nearly as much during the time I’m home as I’d want to.

I know I’m in the process of going into long-term care. It is an incredibly slow-moving process, so I can’t write much about it.

I have developed an interest in reading. I want to be blogging more about books. Not that I want to be a “book blogger”. I still want this blog to remain as eclectic as it has been so far.

But I want to do something with my life other than being in the process of going into long-term care. I don’t mean I want to work a real job or go back to university. Or maybe I do, but I know I can’t. Then at least reading should satisfy that need for doing something with my life.

Maybe I’ll someday pick up crafting again. Soap making or jewelry-making. I tried to make my own melt and pour soap at day activities again last Monday. It went okay. I needed a doable amount of help. Same probably with jewelry-making. At least with making the simple string necklaces I am used to making. They aren’t even bad. But they aren’t something I can blog about.

And as it seems, I’ve dedicated everything I do in life to the purpose of blogging about it. Well, not exactly. Of course I’m not going into long-term care to have a more interesting life to blog about. That seems like something my parents would think, since I did at one point feel like becoming a mother mostly for that purpose.

I can have a much more interesting life if I just live. And if I find joy in what I do. That way, I can help spread positivity. And I hope that by sharing where I’m going with a positive attitude, I can have an influence on the world, or at least the WordPress community. I don’t need to be an “influencer” – such an overused word – to be of influence. I just need to be me.

I am writing this post for Stream of Consciousness Saturday. The prompt this week is “Where”.

I Was Taught to Believe…

Posted on by Astrid

That, if I didn’t have my parents’ support, I had no-one’s and I would never get anyone’s support. “You are socially inept,” my mother said, “and you got it from us.”

This exchange happened in late April of 2006, when I had just been kicked out of my parents’ house. Not that I still lived with them, and not that I was ever planning on doing so again, but my parents made it very clear that they would no longer support me. I don’t even mean financially, but practically and emotionally.

What had I done to deserve this? I had told them I was delaying going to university one more year. I wasn’t giving up on it. I was still going to meet their expectations of me that I become a university student, grad student, Ph.D., professor, you name it.

And then I didn’t. In the fall of 2007, while attending the university I had originally been meant to go to in 2006, I gradually fell apart and was ultimately admitted to the psychiatric hospital. Though I was discharged in 2017, I never went back to university.

Though my parents and I are still in limited contact, I know I don’t genuinely have their support. Not emotionally. I mean, I see them twice a year, talk to them on the phone about once a month and get €1000 at the end of the year to spend on new technology mostly. I don’t know whether this will remain the same when I go into long-term care (or when they find out about it). And I’m not sure whether I care. They aren’t the type to stop talking to me at funerals or the like and I don’t really need their money or birthday presents or phone chatter, though they’re nice. I won’t go no contact, but if they decide to abandon me, that’s their choice.

Because, though I was taught that without my parents, I had no-one, this isn’t true. I met my husband in the fall of 2007. You know, the fall that was supposed to be the start of my academic career and ended up being the catalyst to my getting a life of my own. My husband supported me through the psychiatric hospital years. He supports me through the years we live together. I trust that he’ll support me through the coming years when I’m in long-term care. I may be socially inept, but that doesn’t mean no-one will support me. Love me even.

This post was written for V’J.’s Weekly Challenge. V.J. challenges us to think about the untrue things we were led to believe as children or in other dysfunctional relationships.

Candy Cake

Posted on by Astrid

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!

Losing Myself and Finding Myself (Reena’s Exploration Challenge #96)

Posted on by Astrid

I remember when and where I lost myself. My old self, that is. It was November 2, 2007 at 8:01PM when I stepped onto the bus at Balustrade bus stop in Apeldoorn. I had decided this was it.

I phoned my old support coordinator at the training home. I’d just been told to leave the home’s premises, because according to the on duty staff, I was making them take unwarranted responsibility for me. I had come there in distress and a housemate had offered for me to spend the night with her, so that we had time to find me a new place to stay in the morning.

I wasn’t homeless. That is, I had a roof over my head. In the Netherlands, the word that translates to “homeless” also refers to people who are wasting away in their residence. And I was.

At 8:01PM November 2, I phoned my old support coordinator to tell her I was going to kill myself. I was on the bus and the bus driver and fellow passengers heard me. They called the police and, after a long wait at the police station, I was admitted to the psychiatric hospital in the middle of the night.

At that point, my old self went away. I lost the self that went to college, had plans for working and lived independently.

I’m still not 100% sure who will replace her. When and where I’ll find myself. My new self, that is. I know my old self is gone. Even though I live semi-independently now, I do not have anything close to a “normal” life, whatever that may be. But that’s okay. I know I will ultimately find a new eqwuilibrium, when I’m in a living facility that suits me.

In September of 2006, I wrote a post in my online diary about the two different images I had of myself. One was “white”. This image represented a “normal” life. Living independently, going to university, finding a job, marrying, getting children and whatnot. The other image, the “black” one, represented my need for support. It wasn’t that I needed 24-hour care, but that I needed more than just the once-a-week visit from a support worker to read me my mail that’s normal for people who are just blind.

By April of 2007, I knew the “black” image was coming true, but I was seeing the colors in it. I eventually did live independently and go to college, but I would get sixteen hours of home support a week.

And then that image too died, on November 2. It was hard. I grieved. But I didn’t give up. Gradually, I started to see how colorful a life I can have if I accept care.

The care facilities I’m looking at moving into, couldn’t be closer to the “black” image of myself. They are 24-hour intensive support facilities. Yet I don’t see that life as bad. I see it was exactly as colorful and rich as, or even more so than the “normal” life I envisioned for myself.

I am joining in with Reena’s Exploration Challenge #96.

Progress in Finding Long-Term Care

Posted on by Astrid

It’s been exactly six weeks since I got approved for long-term care, so that we could finally start finding me a supported housing facility. Things are moving slowly but steadily. Today, let me share how we’re doing.

Immediately after we heard I was approved for long-term care funding, my support coordinator contacted the care consultant for my current care agency. She made sure to get the paperwork in order so that, while we’re waiting for supported housing, I can retain my current support. After all, community support through the local authority was immediately stopped. My support coordinator also contacted the care consultant for the living facility in Raalte, which is with my current care agency too.

When it turned out the process with that living facility would be slow-moving, I proposed to contact the two blindness agencies to explore the possibility of my living there. One of them responded immediately with an appointment for an intake interview. This is, unfortunately, the one with the facilities in the far north and south and west of the country. Of course, we are talking the Netherlands, not America. However, my husband isn’t happy to travel up to two hours each week to visit me. We agreed on a maximum distance of one hour. This agency has nothing within an hour’s driving distance. We did however request that they help us by recommending accommodations a future living facility could make for my blindness. They will come by to observe me at day activities next week.

The other blindness agency has my file, but they haven’t yet scheduled an appointment to meet me.

I went to have a look at the facility in Raalte last week. It was great. The staff/client ratio is 1:6 to even at times 1:4 during the day and there is an awake night staff. They also have tons of sensory supplies, including a sensory room, rocking lounger and a bathroom with a tub. I will hear more about whether the psychologist and physician for this facility find me a good fit soon.

Then today I heard about another facility. It is with a countrywide Christian care agency. It is in the city of Ede, which is about a 45-minute drive from my current home. The facility primarily serves elderly people with intellectual disabilities. I don’t know whether that would be a problem. It might be, as the other clients are probably a lot less mobile than I am. Clients only have a bedroom to themselves, but I don’t mind. The care consultant would send my file to the psychologist for this facility too and then I may come for a tour.

It all makes me feel a bit confused but overall excited too. I mean, I still feel off applying to live in intensive support living facilities, being that I now live semi-independently. Of course, my husband does all of the housework, but still. It’s hard to believe that people suddenly aren’t rejecting me, saying I misuse care and leaving me to my own resources.

#WeekendCoffeeShare (July 14, 2019)

Posted on by Astrid

Yay, it’s Sunday! I am once again joining in with the #WeekendCoffeeShare fun. It’s relatively early for me to write this post, so the most recent drink I had was actually coffee. I usually drink only one cup of coffee at breakfast )or lunch, as it was nearly afternoon), but my husband made me a second cup saying it’s good for the heart. I don’t know whether that’s true, but oh well.

If we were having coffee, I’d share that my husband picked up my new Windows laptop on Monday and installed it on Tuesday. The adaptive tech guy came by on Wednesday to bring me a new Braille display and install the JAWS screen reader on my computer, so that I could actually use it. I have been playing with my computer ever since. I hope the tech company will get me training on the screen reader and Windows 10, but even without training, I like this computer much better than my Mac. Right now, my husband is resetting my Mac, so that my mother-in-law can have it. I think I just closed the tab with instructions on it from my iPhone.

My mother-in-law offered to pay more for the Mac than the Windows laptop had cost, but we refused. I don’t want to get extra money from switching computers.

If we were having coffee, I’d also share that I visited the living facility in Raalte that’s with my current care agency on Wednesday. It was great. There’s tons of sensory equipment in both the house and day center. The staff are also really nice. The house they felt was the most suitable for me, has twelve clients living there. There are two staff during the day and an extra staff during times the clients get showered and such. The manager and care consultant were a bit vague about the waiting list to move in, but I hope to hear more about that soon.

If we were having coffee, I’d share that yesterday, my husband had the yearly driver’s day at his work. He is a truck driver for a large transporting company and the driver’s day is sort-of-mandatory. I spent the day at my in-laws. Well, my father-in-law had just left for vacation, so I was alone with my mother-in-law. We went for a walk with her dog. Wow, it was hot and humid! My husband came to my in-laws’ house after a few hours when he’d had enough of the event at work. My mother-in-law cooked us dinner, although she was interrupted to pick up a kitten from the animal shelter. She volunteers to bottle-feed kittns that are too young to be kept at the shelter. The kitten was lovely!

How was your week?

#WeekendCoffeeShare (July 7, 2019)

Posted on by Astrid

Ugh, I’m feeling so off. I want to write so bad. Words are spinning through my mind, but somehow I cannot put them down onto the keyboard.

I am once again joining in with #WeekendCoffeeShare. I had a delicious little apple pie with my cup of green tea this evening. Grab a cuppa and let’s catch up.

If we were having coffee, I’d share that we decided to let go of one of the houses we were looking at this past week. It’s the house built in 1880 that my parents are totally in awe of, but we’d take a huge risk if we bought this. Inspecting the foundation for problems cost like 5000 euros and there is indeed a high risk that the foundation will be unstable. That amount of money is not something we want to invest before buying the house, yet we don’t want to risk finding out about it once it’s ours. I didn’t like the house to begin with, but my husband loved its appearance.

If we were having coffee, I’d share that next Wednesday, I am invited to go check out the living facility with my current care agency. It’s in Raalte, which is a little over an hour’s drive from my current home. My support coordinator was told not to get me too excited, so I predict the place has already almost certainly been taken, but oh well. We’ll see.

If we were having coffee, I’d share that I bought some books on Amazon today. One is a collection of journaling prompts (yes, again!), which cost only 99 cents, but it’s still disappointing. It has a ton of typeos and characters VoiceOver makes out to be Chinese or Japanese in it. The other is Angels in Our Hearts by Casey Watson and Rosie Lewis. It’s a collection of previously published eShorts by these two foster carer writers. It sounds good.

If we were having coffee, lastly I’d share that my husband ordered a new Windows computer for me today. My mother-in-law will pay for it, as she’ll get my Macbook. The computer he ordered is an HP Pavillion, which I’ve heard is quite a sturdy model. It doesn’t have a solid state drive like my Macbook, but it does have some type of thing attached to the hard drive that keeps stuff you use often in a sort of ready-access memory. The hard drive has 1tB of space, which is awesome. I no longer need to worry about getting it full and I can even copy all of my CDs to my PC now. I have a ton of CDs with music that’s hard to come by on streaming services, so that’s cool.

I think my husband will go collect the computer at the pick-up point near his work tomorrow. On Wednesday, the adaptive tech company is coming by to install JAWS, the screen reader, onto it. I called the company to let them know they’ll need to schedule the visit with me in the morning, as I’ll be off to Raalte at 2PM.

What’s been happening in your life lately?

Currently (July 2019)

Posted on by Astrid

I have known about the Currently link-up for years, but rarely joined in and never did on this blog yet. Since the start of the linky coincides with the Insecure Writer’s Support Group day, I have until now found it hard to find time to join in. But now here I am.

Reading

Blog posts, mostly. I haven’t really been reading a book in months, but I really want to.

I did get a few free Kindle books on Amazon and did renew my Bookshare membership last month, so really I should have plenty to read.

Enjoying

Firstly, cooler weather. It was really hot here last week, but this week, it’s about 20 to 25 degrees Celsius, which is nice. I even managed to exercise on the elliptical again yesterday, despite my room being the hottest in the house.

Secondly, I enjoyed my birthday gifts. Last week was my 33rd birthday and I got some lovely presents.

Finding

Myself a living facility soon, hopefully. I will be finding out more about the living facility with my current care agency next week, as I will be visiting there then for an orientation meeting.

Saving

Money. Or at least, trying to. I found out last week that, now that I fall under long-term care rather than community support, my copay for the exact same care will be 140 euros a month rather than nothing. It will be 330 euros once I go into a living facility. Ugh. Since my husband and I may be buying a house too (for him to live in full-time and me on week-ends), this may help us reduce the monthly cost for living there. Mortgages are usually cheaper than rent, after all. Still, it doesn’t hurt to save some money.

Tasting

Lentils. And I actually liked them. My husband made a rice dish with them in it on Saturday. I don’t usually (think I) like lentils, but in this meal, they were good.

What have you been up to lately?