Progress in Finding Long-Term Care

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 appoitnment 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)

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)

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)

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?

#WeekendCoffeeShare (June 30, 2019)

Hi all and welcome to another post in the #WeekendCoffeeShare. This week has been mostly good. I just had a cup of green tea once again, so have a cup with me and let’s catch up.

If we were having coffee or green tea, I’d share that this past Thursday was my birthday. I turned 33. I usually look forward to my birthdays, even though my wishlist is usually rather useless to my family. I love the gifts they give me anyway.

I had almost a full birthday week really, as I had visitors each day from Thursday up till today.

On Thursday, my parents visited and we had dinner at a restaurant called Paddy’s. I expected Irish traditionals, but the music that was played was 1980s Dutch pop. I liked the food though. I had a burger. My father had a lamb’s stew and my mother and husband had fish.

On Friday, I celebrated my birthday at day activities and my parents-in-law visited. I got a lovely sensory soft toy. It can, like the sensory cat I got from my sister two years ago, be warmed in the microwave and then smells of lavender.

Yesterday, my sister and brother-in-law visited. My sister is 30 weeks pregnant tomorrow, so I just had to feel the bump. They gave me new sandals.

Today, my two sisters-in-law visited. They brought me lovely smelling body care supplies. One of them had also made a cheesecake, which was yummy!

If we were having coffee, I’d also share that all the visitors have been looking at the information for the houses we might be offering to buy. Other than the one we saw last week, we visited another house and two apartments this past week. We’re still undecided as to which to place an offer to, if any, and of course, this is none of my blog readers’ business.

If we were having coffee, I’d also share that I met with a care consultant for Visio, one of the two blindness agencies, last Wednesday. This did lead to a little argument with my husband, as he thought I may want to live in their facility that’s nearly two hours away. I did decide then that, even though my husband wants the best for me, being close enough that he can visit each week-end, is more important to me than finding a good placement.

If we were having coffee, lastly I’d share that the oak processionary is no joke. When I first heard of it in the late 1990s, I didn’t worry. Neither did I earlier this summer when I heard it was in my area. I thought people were overreacting to it. Well, now that I have a terribly itchy rash all over my body, I can say it’s serious.

What’s beeen up with you lately?

Four #SoCS

My husband and I like the number four. The reason is that the Dutch word for four, “vier”, is also the Dutch word for “celebrate”. One day when my then boyfriend and I were walking in a forest near his home, we went up a hill and he proposed we celebrate getting on top of the hill with a kiss. A little later, we saw the number four written on the path or something and he said four means to celebrate with a kiss. This is how we ended up making up the word “fouring” for kissing.

We played a lot of card games back then. This was in 2008, when I was still inpatient on the locked psych ward. We didn’t really know what else to do. So everytime a four came up in our card games, one of us would say that meant we had to kiss.

We got married on the day we knew each other four years exactly. Actually, the wedding ceremony was at 3PM. That had been the time of our first date too. It wasn’t because we selected the time, but it was quite cool anyway.

I like to remind myself of these beautiful moments. My husband gave me this little bride and groom that had been on top of our wedding cake. He dug it up from the attic the day after we had a little argument last week about me thinking I might go into supported housing nearly two hours from him. I liked the reminder. I love my husband! I don’t want to ever leave him. I don’t want to live too far from him. My marriage trumps my need for good care.

This post was written for Stream of Consciousness Saturday.

The Summer After High School

It is still incredibly hot here. That is, it should be a lot cooler than it was yesterday. I’m not feeling it though. Probably my room, which is at the front of the house, keeps the heat.

I want to write, but I don’t know what about. For this reason, I looked up writing prompts for the month of June on Google. A prompt I liked is to share about the summer after you graduated high school.

This was in 2005. Man, can you believe it’s already been fourteen years? I remember finding these odd lists of things that mean you live in 2005, such as “You have lost touch with old friends simply because they don’t have an E-mail address”. E-mail is way outdated now. However, I think WordPress already existed, though I didn’t have an account. But I digress.

I graduated from high school on June 24, 2005. Two weeks prior, I had finished the assessment week at the country’s residential rehabilitation center for the blind and had been advised to attend their basic training program. It was expected that I couldn’t start until October.

However, in early August, I received a phone call telling me I could start on August 22. So that’s where I spent the last few weeks of the summer holiday and the rest of the year.

The summer of 2005 was also the summer I had a ton of health worries. Most of them were just health anxiety, but one of these scares did get me sent to a neurologist for suspected shunt malfunction. That was when I first learned about the possible impact of my hydrocephalus on my life. I never had a shunt malfunction *knock on wood*.

The summer of 2005, essentially, was the time I left my parental home and entered the care system. Even though I was supposed to get independence training, my father predicted I would never leave the care system. He was right, but so what?

Today, I had a meeting with the blindness agency which the rehabilitation center is part of to see if I can live with them. I won’t, because their living facilities are all over an hour’s drive from my husband. This meeting did remind me of how I entered the care system fourteen years ago with the aim of doing training for a year (at the center and an independence training home) and then leaving for Nijmegen to live completely independently. It didn’t work out. The disparity between this overly-normal, independent self, the one who is married now and doesn’t need help, and the multiply-disabled self, is still hard to deal with.

#WeekendCoffeeShare (June 23, 2019)

A lot has been floating through my mind today, but until I decided to participate in #WeekendCoffeeShare again, I had no idea how I was going to convey my thoughts into a blog post.

Like last week, I’m having a cup of green tea as we catch up. I love green tea, more so than coffee. I must say though that I’ma bit addicted to coffee. I drink it more to get energized or out of habit than because I truly like it.

If we were having coffee (or green tea), I’d share how I’ve been doing with respect to finding a living facility. On Tuesday, I had an appt with the care consultant for a facility with my current care agency. Because he isn’t in a position to decide whether I’m a good fit, I’ll have to wait for him to discuss my case with the behavioral specialist and manager. He said he’d call my support coordinator next Tuesday, but wasn’t sure whether he’d have any news by then yet.

Because I wanted to remain active, my support coordinator has been contacting some other agencies. We started with the two national blindness agencies. Bartiméus has living facilities about an hour’s drive from my current home. Visio’s living facilities are all at least 90 minutes away. Visio was the first to return my support coordinator’s call and I have a meeting with them next week.

My husband was a little sad, as he thought I want to live in Visio’s facility that’s nearly a two-hour drive away. Of course, I want to be as close to my husband as possible, but I didn’t know how to go about finding a suitable living facility. My support coordinator is going to contact other agencies closer to my current home next week. These are not for the blind, but oh well.

If we were having coffee, I’d also share about our house-hunting experience. The visit to the house on Tuesday was okay, but after reading some reports on it, we decided not to go for it after all.

If we were having coffee, I’d share that my husband and I had lunch at a pancake restaurant today. I had a pancake with blueberries, while my husband had one with raisins and bacon as always.

If we were having coffee, I’d also share that the screen reader company finally called to let me know I could get a new version of JAWS, my screen reader for Windows, covered by health insurance. It is also about time for a new Braille display, he said, and they could let health insurance pay for both in one go. This means that after an eighteen-months-long wait, I may finally be able to get a PC with Windows 10 and the screen reader I love. Of course, I already have a Mac and hence I told the company rep I had to think of it.

My husband was critical at first. He asked which I’d get rid of if I had to choose one: my Mac or a PC with Windows 10 and JAWS. I said I’d get rid of my Mac. I mean, I’ve had it for nearly half a year and still struggle to use it. Other blind people say that’s normal, but I really don’t want to spend that long getting used to a computer. I mean, that’s how long it took me to get used to my very first PC! So my husband offered to get me a laptop with Windows 10 and all if he can have my Mac.

I have been thinking it over and the only thing I can do with my Mac that was a pain on PC was using a good feed reader. Then again, I can’t get used to the way Safari works on Mac, so if I want to actually interact with feeds, I’ll still prefer my iPhone. I no longer use my PC, because it has two broken keys and its Windows 8.1 won’t properly update.

Anyway, I’m going to call the company rep to let him know I’ll go for getting the Braille package as it’s called tomorrow.

If we were having coffee, I’d also share that it’s incredibly hot outside. In the coming week, it’s forecasted to get to 35 degrees Celsius or more. That’s no fun, as we don’t have air conditioning at home or at day activities.

The coming week should be exciting. Tomorrow, the day activities staff are taking some fellow clients and me to a local park and having lunch at a restaurant there.

Next Thursday is my birthday. I love it each year. We are going to eat at an Irish pub with my parents then. My sister and her husband are coming over for a visit on Saturday.

How have you been?

Gratitude List (June 22, 2019) #TToT

I am feeling okay. Not bad, not good. I am however rather uninspired as to what to write. For this reason, and to hopefully lift up my mood just a little, I’m going to participate in Ten Things of Thankful (#TToT). Here is my gratitude list for the past week. Man, it’s been forever since I did those.

1. Eating rice. My husband bought a rice cooker last week. I love rice, but my husband doesn’t like it when he cooks it the regular way. He does like it when cooked in the rice cooker though. We had rice or risotto several times this past week.

2. Lunch out with my husband. On Tuesday, my husband and I went for a visit at a house we might want to buy. It didn’t work out in the end, but the lunch beforehand was good.

3. My husband preparing my breakfast a few times. My husband is off work this week and next week, which means he’s still in the house when I get up at 7:20AM. Normally he leaves the house at between 5:00 and 6:00AM. He prepared my breakfast a few times this week, making me a cup of coffee. I’m normally too lazy and in a rush to make coffee for myself on week days, so this was extra lovely.

4. Nice weather. It’s been pretty good all week. For next week, the temperature is supposed to rise to 35 degrees Celsius, which isn’t what I like. But I’m thankful to be able to wear summer clothes.

5. Being productive in finding me a living facility. We had a meeting with the care consultant for a facility with my current care agency on Tuesday. The outcome was vague, as this person wasn’t in a position to decide whether I’d be a good fit. However, my support coordinator has been trying to contact several other care agencies.

6. Some nice walks with my support coordinator. On Wednesday and Thursday, when we finished the work we were doing for finding me a living facility, we went for a walk. It was fun.

7. Getting free candy. At the marketplace near my day activities, there is a candy, nuts and dried fruits vendor I regularly buy candy at when we visit the marketplace each Friday. This past Friday, he gave the staff some free candy to give us during coffee breaks.

8. Trying out some new workouts. I’m currently trying squats and such, which are incredibly hard. I also reached my five-day exercise goal, but cheated a little, as walks of 15 minutes or more do count and I didn’t go on the elliptical.

9. Curly fries again, yay! I hadn’t had them in a really long time, but my husband ordered them for me yesterday.

10. Leftovers from a fellow client’s celebrating 25 years working at my day activities. I didn’t attend the celebration itself, as it was on Tuesday afternoon, when we were visiting the house on sale. However, we had lots of leftovers on Wednesday.

Oh my, I’m really obsessing about food as I write this list. Can you tell I love eating? Well yeah, I do. Now going to try to exercise some.

#WeekendCoffeeShare (June 16, 2019)

I have a ton I want to write about, but I’m not sure I can dedicate a full post to any one of these things. For this reason, I’m joining in with #WeekendCoffeeShare. I should really make this a regular habit, but for whatever reason, I cannot seem to make anything a regular habit where it comes to my blog. Anyway, grab a cup of coffee, while I grab a cup of green tea. Let’s catch up.

If we were having coffee, I’d like to share that this week has been pretty exciting. Not that anything much has happened, but we have a ton of plans layed out for the coming while.

For example, my husband decided he wants to go have a look at a house that’s for sale. It’s in his work city, which would mean a lot of time and money saved on commute. It’s a really old house, but my father said modernizing it should be relatively easy. My husband and I are going to have a formal visit on Tuesday.

My husband did ask whether, if I move there with him, I’ll retain my care. I said yes. The last time I participated in the weekend coffee share linky, I was awaiting news about my long-term care appeal. Well, I won! On June 4, I got approved for long-term care.

This also means I can start looking for a living facility. However, if my husband and I decide to buy the house and move before I’ve found a suitable facility, I will retain my current home support and day activities even though that city isn’t in our local authority. That’s as much as my parents know about long-term care. I haven’t told them I’m probably moving into a care facility.

Speaking of living facilities, I’ll meet with the care consultant for a living facility next Tuesday. This facility is about an hour’s drive from my current home, but it is with my current care agency and seems more suitable than the facility I toured in January. I cannot be sure of that, of course, as I have yet to be fully informed. So on Tuesday morning, I’ll meet with the care consultant and then in the afternoon, I’ll accompany my husband to the house visit.

If we were having coffee, I’d also share that my husband bought a rice cooker. He doesn’t like rice the way he usually cooks it, so was trying whether a rice cooker would help. I liked it. I really love the smell of rice!