Hope for My Home #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “starts with ‘ho’”. The first word that came to mind for me was “home”. In less than two weeks, I’ll be at my current care home two years. I remember celebrating the two-year mark in Raalte, almost fully confident that I’d stay there for many more years. In fact, at my care plan review at the end of September (I moved into the care home in Raalte in September too), I said I was 95% sure that I wanted to stay there. “Make it 98%, please,” said my home’s manager. A year later, I had moved to the intensive support home and, as it turned out, the higher-ups in Raalte didn’t want me back.

Another word that came to mind is “hope”. We all could use a little hope, I think. I want to start by saying that, if I celebrate my two-year stay at this home, it doesn’t mean I’ve jinxed (a word I only recently learned of) it and I’ll be voluntarily kicked out of here in less than a year, like in Raalte. I still hope there’s room for improvement in my care and, rather than being shoved around, I’ll finally be able to feel home.

I do admit I have good days. Today, I baked a Biscoff blondie with my staff. That was fun! I just so wish that my life were actually relatively good rather than my having to hope everyday that this day will not suck. Not that a day when I don’t bake sucks, of course. Life is more than Biscoff blondies. But when all I can tell my spouse on the phone that I’ve done today is walk and play dice games, it’s boring. And that’s while my life could be so much less boring if I were able to contribute. And I don’t just mean cooking, baking and crafting. I mean the less interesting tasks of daily life too. I feel accomplished when I’ve helped with some chores around the home. I hope that when, at some point, my new day schedule is created, life’ll be a bit more fulfilling.

Crafting Lately (December 16, 2024)

Posted on by Astrid

Hi everyone. I finally feel as though I’m actually adjusting to life in this care home and feeling like this could maybe, hopefully be my home for a long time. This is a huge positive, as I’ve never felt this way in any place before except maybe for the care facility in Raalte in late 2021. As most of you know, that didn’t last. Please keep your fingers crossed that this feeling of finally belonging won’t be the beginning of the end this time around.

I had a good week last week. I am pretty much over whatever I was sick with all of the week before, probably a mild case of COVID. Since I no longer need to deal with unfamiliar temp workers and most of my staff last week know how to help me with my crafting, I’ve been able to be pretty creative.

I think I mentioned a few weeks ago that I’d been trying to craft a polymer clay unicorn for a new staff who’s as much into unicorns as I am. Unfortunately, one of the wings fell during the curing process and it hung in such a position that I could neither pull it off and craft a new one, nor be content with how it looked.

About a week ago, I was thankfully able to create a new unicorn. No wings this time, but I did use a tiny (5mm) heart cutter to create a little symbol for on the unicorn’s side.

This is my default unicorn in a sitting position. Its body and head are done in Premo white, while its mane, tail, ears and horn are done in Fimo Effect rose quartz. The tiny heart on its side is done in Premo 18k gold.

Then, I created a Christmas tree. This one I did by rolling out a snake then rolling it up into a coil that decreases in size as it goes up, thereby creating the tree effect. I used Fimo leaf green for the tree and Cernit Christmas red and Fimo Effect glitter gold for the baubles. I then added a spark in Fimo Effect glitter gold to the top.

In hindsight, I probably should’ve used Premo forest green and Premo 18k gold rather than the Fimo colors. However, I haven’t opened my Premo forest green yet, because we’re out of labeling tape and hence I cannot yet label the Ziploc bag I’ll put it into once opened. I also want to use an actual star for the top next time, but my star-shaped cutter hadn’t arrived yet.

Lastly, I decided to challenge myself with the unicorn design and create a unicorn-in-a-mug. That is, I’m lazy, so of course there’s no actual unicorn body hiding in that mug. I used Premo white for the mug and Cernit violet for the unicorn head. For the mane and horn, I used Fimo Effect metallic silver.

Originally, my staff had taken the photo of the unicorn from a slight angle, so the mug wasn’t fully visible and the thing looked like a unicorn in a white gown. I decided to ask another staff to take a new picture today.

I really loved being able to craft again. I’m so happy my creative juices are flowing.

Gratitude List (May 6, 2023)

Posted on by Astrid

Hi everyone on this first Saturday of May. I’m joining Ten Things of Thankful (#TToT) for a gratitude post today. Here we go.

1. I am grateful for a trip to buy some new plants for in our care home garden last Saturday. One of the student staff had been planning on us having a vegetable garden here. While that’s not exactly gone to plan, we do have a few flower beds and some space for vegetables too. I loved helping pick out the first few flowers and plants.

2. I am thankful for new duvet covers. My husband last week told me he needed new ones for our bed in Lobith. Too bad twin bed duvet covers don’t come in cute colors, but those for my single bed do. I got one with rainbows on it and one with butterflies on it.

3. I am grateful for sleep. I have been able to sleep reasonably well over the past couple of days.

4. I am grateful for some success with physical therapy. The physical therapist came by on Wednesday to try to do some yoga exercises with me in order to help me loosen up my muscles. It was hard but rewarding. I am grateful my assigned staff said I can have a staff member with me during physical therapy even when it’s not during my allocated activity time.

5. I am grateful for nice weather on Thursday. We hit 20°C for the first time this year that day.

6. I am grateful for no thunderstorms that I was aware of yesterday. A lot of rain, hail and thunder had been predicted, but thankfully I was indoors when it rained and, insofar as we got any thunder at all, it was far enough away not to make me startle.

7. I am thankful for a lot of compliments on my skirt and shirt that I wore on Thursday. These aren’t really suited to the colder months (unless I find panties or leggings that will go with the skirt, but I only have black panties now). Most clients really liked my outfit. I bought both the skirt and shirt relatively recently.

8. I am grateful for ice cream. On Thursday, two staff took me and another resident to Deventer, the nearest city, to get ice cream. We originally intended to go to a place that’s supposedly really good, but couldn’t find a space to park near there, so decided to go to Talamini, an ice cream chain that’s good too. I had caramel and Kinder Bueno, a candy bar flavor, on a cone. Unfortunately, I did get the ice cream all over my skirt, shirt and into my hair.

9. I am grateful to have been supported by my assigned staff more than usual lately. She also makes it clear that it isn’t like she’d been avoiding me, but that, with all the chaos and crises among other clients and her being a regular employee here, it just isn’t always possible for her to support me regularly.

10. I am thankful I haven’t lost all hope yet. Sometimes, it feels like it, but I am glad I can still appreciate the little things in life.

The Wednesday HodgePodge (April 5, 2023)

Posted on by Astrid

Hi everyone. It’s time for the Wednesday HodgePodge once again and I’m giving it a try. Last week, I was scared away by the challenge of writing a limerick. I hope my participating in the hodgepodge today doesn’t mean I won’t have energy left for my #AtoZChallenge post later this evening. We’ll just see.

1. What would you say is the most difficult task when it comes to spring cleaning? Have you completed that task this year? Any plans to get it done?
Uhm, I don’t do spring cleaning or most cleaning at all for that matter, but when I still did my own cleaning back in the independence training home in 2006-2007, I thought windows were the hardest. I tried them exactly once in the 18 months I lived there and the staff agreed it’d be best to hire someone to do those for me. Another task I hated was cleaning out kitchen cupboards. I don’t have those here, but I seriously need to give the cupboards and closets I do have a good wipe down.

2. Your favorite pastel color? Favorite thing you own in a pastel shade?
My favorite pastel color is probably lilac, although I love all pastel colors really. I don’t own any pastels in my clothing as far as I’m aware, but I do own several pastel shades of polymer clay. The one I use most often is pastel aqua Fimo.

3. Do you like ham? Do you fix ham year round or is it mostly just a “holiday food”? Baked ham-ham and eggs-ham and cheese sandwich-scalloped potatoes and ham-Hawaiian pizza….what’s your pleasure?
I don’t really like ham, but it isn’t like I dislike it either. It’s not specifically a holiday food here. My favorite food that includes ham would be a Hawaiian pizza.

4. Do you celebrate Easter? What did Easter look like when you were a kid? What are your plans for Easter this year?
I don’t celebrate Easter. I mean, we might have some treats here at the care home and I’ve heard the living room was decorated for it, but it’s not like I go to church. Never been, in fact. I grew up atheist, so while we’d paint eggs and go on an Easter egg hunt, the story of Jesus’ resurrection wasn’t really familiar to me.

5. Something that makes you feel hopeful amidst all the chaos and confusion this world brings?
I am not sure how to answer this question, as I realize most hodgepodge’ers are Christians and I am not. I am not even sure what I do believe in. I mean, I am certainly not an atheist, but I have let go of my belief in the God of the Bible. Now is not the time for me to go into my reasons why, as I don’t want to offend my Christian fellow hodgepodge’ers.

However, to answer the question, I do believe that, ultimately, things will work out. I sometimes cynically joke that things will work out in 2034, referring in a kind of twisted way to the book by that title that claims World War III will start then. Seriously though, I do believe in some higher power, which I’m not sure yet what to call, by which everything is connected and will ultimately fall into place as it should be.

Other than that, the small joys I experience each day remind me that there’s still hope in the world.

6. Insert your own random thought here.
I’ve been in my current care home for exactly six months today and am hopeful it won’t be much longer, as there have been a lot of crises lately. Today, however, so far, is a pretty good day. Let me focus on that!

Some Glimmers of Hope

Posted on by Astrid

Hi everyone. It’s once again been a week and a half since I last posted. This week and a half hasn’t been boring at all. In fact, it’s been filled with events that triggered all kinds of emotions in me.

Last week Saturday and again on Monday, I had some very difficult conversations with my assigned staff. She turned out not to mean things too badly, but just got very frustrated with my trouble understanding non-literal speech. We also once again ran in circles about this home being very different from the home I come from and my being used to the old home and never getting it like that here. I know, I don’t expect things to go precisely the same as they went there, but there’s something between the way I was treated at my old home and the very harsh way I’m treated here.

These conversations got me so frustrated that I started thinking I may need to get an independent client supporter to help me find another home. After all, moving to another home within my current care agency, isn’t an option.

Then on Wednesday, a staff told me about her plans for getting day activities rolled out at this home. I’m not sure I can participate in all of them, but some I can take part in. This staff also assured me that my assigned staff is completely on my side.

This also became clear when I had the meeting with the mediator, my assigned staff, the behavior specialist and my mother-in-law yesterday. My assigned staff admitted that some (most, in my experience) of her coworkers treat me just like they treat everyone else at this home. Apparently the harsh approach is what the others need, but I don’t (unless I for instance insult a staff member, which only happens during a severe meltdown, 99% of which can be prevented with the right support). We agreed that my signaling plan (for preventing and averting crises) will be revised, but the behavior specialist assured me that for the most part it can stay the same. After all, she said I haven’t become a different person since moving here. That felt validating.

I positively told the people attending that, since implementing my new day schedule, things have significantly improved. I also told them I realized this may be all I can expect of the staff, so I am (trying to be) all happy when it goes smoothly. However, when it doesn’t go smoothly – for example, when the staff are frequently late for my assigned support times or leave me alone beyond my assigned alone times more than occasionally -, I’m not happy. It gets worse when the staff justify their tardiness or leaving me alone beyond my assigned alone times with some comment about my not having (full-time) one-on-one. Their reasoning is that, since my one-on-one isn’t full-time, I essentially don’t have one-on-one at all and can just expect staff to pop in whenever they please. Their terminology is a bit screwed (I think I explained it in a previous post) and it irks me beyond belief. I know I don’t have full-time one-on-one and I don’t expect it, but I do have the day schedule for a reason.

Both the behavior specialist and my assigned staff validated my need for the day schedule and for staff to stick to it. I said I understand that a severely challenging situation among my fellow clients could be a factor preventing this, but the behavior specialist said this shouldn’t happen more than a few times a week. Currently, it’s usually at least once a day (and I obviously don’t mean the times my staff is running like five to ten minutes late for my support). My assigned staff actually went so far as to say the extra staff is there primarily for me. She is going to clarify this and some other things in a basic info sheet on me that all staff can read when starting their shift with me.

Altogether, the meeting gave me some glimmers of hope. It remains to be seen whether the staff actually do something with what came out of it. I do still have my worries about my support coordinator overriding all this once she returns from her time off. Then again, I am pretty sure that, if the behavior specialist actually means what she said, my support coordinator can’t really do that.

Joy in October and November

Posted on by Astrid

Hi everyone. I didn’t post an update on my word of the year last month, so I’m doing one now. My word is “JOY”. As usual, I’m linking up with the #WOTY Linky as well as Lisa’s One Word Linky. Here goes.

I honestly can’t remember the joy I was looking forward to experiencing next month at the end of September. I just had a look at the post I wrote then and I said then that I was hoping to enjoy real food, as the staff at my new care home cook. I wasn’t as high with anticipation as I now looking back thought I was, realistically saying I’d have a lot to get used to so was just hoping to enjoy some everyday pleasures. I didn’t specify what these included.

As regular readers of my blog will know, I indeed did and still do have a lot of getting used to do. In fact, I’m pretty sure I won’t ever truly adjust to the chaos that is the new care home. As a result, I didn’t experience much everyday joy over the past few months. I did for the most part enjoy the real food, but not as much as I’d have liked, as I wasn’t involved at all. I’m hoping to be able to contribute to thinking up the menu soon, but the staff usually receive ideas from the clients while they are in the communal room and the staff are in the adjacent office. Since I hardly ever join the other clients in the communal room and there’s no set time for the staff to think up the week’s menu so that I could then, it may be hard for me to participate, but I at least voiced my wish to do so once again.

Over the month of November, I did finally try my hand at crafting semi-regularly again. During October, I tried to as well, but there hardly was any time for the staff to help me so I struggled to find the opportunity. I managed to finish two polymer clay pieces during November, the latter of which unfortunately didn’t cure properly so it broke.

I also enjoyed two hour-long walks during October. During November, my mobility wasn’t as great, so I struggled even with 30-minute walks. I did eventually manage to take a couple of pictures during my walks though.

I also looked forward to enjoying visits from family in October. Indeed, my sister did visit me. So did my husband and mother-in-law, both regularly during the past two months. These visits are a welcome excuse to leave the care home.

Honestly, I am not sure whether, at the end of September, I somehow knew that the new care home wasn’t going to be what it was cracked up to be and that was the reason I didn’t specify the everyday pleasures I hoped to enjoy. Even if I knew then, the adjustment honestly is far more intense than I expected it to be. In truth, I’ve been pushed far beyond my limits and the experience has been mostly a nightmare.

Now, at the end of November, I am noticing some tiny glimmers of hope on the horizon that might mean the new care home could actually become less than nightmarish for me eventually. I am not sure these will mean anything in the coming month yet, so I will continue to focus on small joys. For example, I am hoping to enjoy crafting even if I can’t enjoy it nearly at the level I used to. I am also hoping to enjoy some walking, weather permitting, as well as continued regular visits from my husband and mother-in-law.

Hope and Faith

Posted on by Astrid

Today, Sadje’s Sunday Poser is about your rock in the storm. Who or what keeps you going when the times are tough?

For now, I could – should, maybe – easily say it’s my faith. I became a Christian last year and feel very much comforted knowing that, in the end, it’ll be okay. Not in this life, mind you. Jesus never promised us that there would not be any obstacles in this earthly life for us. Quite the opposite, in fact. We will still physically die and the Bible doesn’t promise Christians any easier end to their earthly life than non-believers. But in the end, in the Kingdom of God, it will be okay.

However, like I said, I didn’t become a believer until last year. I did kind of believe in “something” for many years, but that didn’t quite amount to much. So what kept me going until I started following Christ?

I guess the answer is as simple as the one above, and somewhat related too: hope. I always kept hope alive that, in the end, things would be okay. Even in the darkest depths of my suicidal crisis in 2007, there must’ve been a reason I in fact called my support worker to say goodbye rather than just killing myself without informing anyone. I felt, deep down, that there was still a way out of my darkness, even if I didn’t know what it was right at that moment.

At the time, my rescuers were the crisis service people in my parents’ city, who proposed I get admitted to the mental hospital.

That being said, I’ve never really felt that specific people are my rock in the storm. I mean, of course I appreciate my husband supporting me through everything. However, as unlikely as it is, I always have at the back of my mind the possibility that I’ll lose him at some point. That’s a residual effect of my having had very little stability in my life.

However, hope has always kept me going. It is interesting in this respect that most people who superficially know me, see me as a pessimist. I might look at things from a negative angle most of the time, but when it ultimately comes to it, I always have hope.

I Am Not a Calculation Mistake

Posted on by Astrid

Like I mentioned last week, I have been doing a Bible study plan on YouVersion called Hope Heals in the Midst of Suffering. I finished it yesterday and it was awesome. It was written by Katherine, a woman who survived a severe stroke shortly after becoming a mother, as well as her husband.

The plan follows Joseph’s story, the part of Genesis I had gotten stuck on in my Bible in a Year plan. I was glad to read it now.

At one point, Katherine shares that, about a year after her stroke, she is still unable to perform many basic functions. She is still in adult diapers, unable to eat, unable to even lift up her head. Her family is having Thanksgiving dinner with her son, then a toddler. As the family are playing with her son, she wonders if there was a mistake. Should she have died from her stroke?

It was at this point that a lightbulb went off in my head. I, too, have often wondered whether my life is a mistake. A calculation mistake, to be exact.

You see, I was born over three months premature. Officially, I was born at 26 weeks 4 days gestation. However, it is quite probable given the circumstances of my conception that my mother really wasn’t yet 26 weeks along. At the time, 26 weeks gestation was the cutoff for active, life-saving treatment in the NICU.

My parents weren’t even sure I should be treated actively. At one point, when I’d suffered a brain bleed, my father asked the neonatologist what he was doing with regards to my treatment. “We’re just keeping her alive,” he said. He (or his nurse) added that my father shouldn’t interfere in my treatment or he’d lose custody of me.

In 2004, when I was eighteen, this same doctor was quoted in a newspaper as saying that he sometimes meets preemies he’s kept alive back in his early days as a doctor, about whom he wonders: “What have we done?!” I at the time tried to reassure myself that he wouldn’t have meant me. Or would he? I, after all, am multiply-disabled and in long-term care.

The devotional in the Bible plan I was reading continued. Katherine at this point heard God clearly speak: “I am God. I do not make mistakes.”

This was what I needed to hear! I have tried to find my neonatologist on Google several times since that newspaper article. However, I don’t need his opinion. I have talked to my father about his views on my quality of life several times, but it hasn’t helped. I don’t need my father’s opinion either. God chose for me to be kept alive and that’s what matters.

Grace and Truth

Also joining Friendship Friday this week.

No Shame in Hope

Posted on by Astrid

I have been wanting to share more faith-based posts for a while, but didn’t quite know where to start. Today, I read the second weekly meditation in Hearing God Speak, an enneagram-based book of devotionals by Eve Annunziato. It is a meditation on suffering and the everlasting presence of God through it all.

“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” (Romans 5:3-5 NIV)

I have known this passage for several years, even before I became a Christian. I have probably written about it before. After all, the fact that suffering produces perseverance, really resonates with me. As Annunziato points out, enneagram type fours like me feel most alive when we dwell on our feelings of pain and suffering.

As such, Annunziato challenges us to move towards praising God and seeing His presence in a new way. As such, the line about character and hope is more important to us Fours than the line about suffering producing perseverance.

I don’t think I’ve ever even seen Romans 5:5 and that verse in particular speaks to me now. I, after all, often fear joy and, by extension, hope. I am not yet sure what it is about joy I fear, but it might be a feeling of being less alive if I’m not suffering.

God’s love, however, has been poured out into my heart through the Holy Spirit. This is something to rejoice over, not to be ashamed of.

Indeed, it is interesting that Paul uses the word “shame” in this verse. I had no idea it is this emotion I often feel when I’m hopeful or optimistic, but it is.

I mean, even when I’m doing pretty well, I still say I’m doing “okay”. I remember a fellow patient in the mental hospital did the same and he did this so the staff wouldn’t think he was well enough to be discharged. I didn’t consciously do this, but on a subconscious level, I probably did. And still do, despite the fact that there’s no reason I’ll ever be kicked out of long-term care.

Honestly, there is nothing wrong with feeling hopeful, joyful and optimistic. In fact, it is what God is wanting for us in His honor. For this reason, Annunziato encourages us to praise Him even in the midst of our suffering! Because suffering produces perseverance; perseverance, character; and character, hope. And hope is nothing to be ashamed of, because through the Holy Spirit, God’s love has been poured out over us.

Linking up with Scripture Blessing, Let’s Have Coffee and Recharge Wednesday.

A Bottle of Hope

Posted on by Astrid

Today, I feel stuck in the twilight zone between good and bad. I’m not feeling as hopeless as I was two weeks ago, but I can’t quite say I’m feeling happy either. I really feel numb. This seems to be the story of my life anyhow. I’ve rarely felt truly happy. Sometimes, I feel dysregulated, desperate, out of control. Some other times, I feel a glimmer of joy. That rarely lasts long. This afternoon, I experienced such a glimmer of joy when making a necklace. Then this evening, I was in a small crisis again.

Still, I have this instinct to survive, to go on. I still keep this bottle of hope that I know at some level will always be available to me. Even at times when I’m most dysregulated, I haven’t intentionally taken steps that would really end my life. I still, deep down, have this will to continue.

Now if only I could put the energy I’m putting into merely keeping hope alive, into actually practising contentment. If only I could pick up that bottle of hope from the shelf, instead of letting it sit there until I (someday, probably never) find the perfect life circumstances. Keeping hope alive is one thing, but living a life of joy and contentment, is quite a bit further up there.

This post was written for Eugi’s Weekly Prompt and Michelle’s July 1 writing prompt