Quality of Life #SoCS

Posted on by Astrid

Hi all. I haven’t written a blog post in nearly two weeks, since I’ve been struggling quite badly. However, I saw the prompt for Stream of Consciousness Saturday, which is “starts with Q”. Immediately, the word “quality” and, derived from that, “quality of life” came to mind.

I regularly write about this concept when discussing myself as a former preemie living with multiple disabilities. That’s not what I mean this time though. This time, I mean real, day-to-day quality of life. I’ve seriously been on a quest for a more meaningful life.

You might remember me talking about the cup of green tea I was allowed to have one evening. I said back then that it’s normal to choose when you want tea, so most people will not be appreciative of it. I was. However, as I spiraled further into depression, this cup of tea became the metaphor for how bleak my life is, actually.

It could be a lot worse. It was, back in the mental hospital, where, though I could grab food whenever I wanted (or at least I did), I spent most of my days lying in bed or surfing the Internet. Most of my fellow residents also have even less autonomy than I do. And yes, I know they’re severely intellectually disabled, but quite frankly that’s not an excuse. Just because you’re used to well-intentioned others making every single decision for you (and they are used to it as well!), doesn’t mean that’s how it’s always supposed to be. Or how it should be. Like I was at the time very grateful for the cup of tea at 9PM, that’s not how it always should be. That is, of course it’d be good if I remained grateful for a cup of tea, but in real life, I should be able to make the decision whether I want a cup of tea myself.

Unfortunately, I have a ton of ideas to improve my quality of life and gain more autonomy, but these don’t get to fruition. The reason is in part the fact that an idea has to be put into practice and executive functioning isn’t my best quality. Another reason is resistance from staff, either overt or covert.

I could write a book on all the ways staff have verbally, physically and in other ways hurt me under the guise of being human and having emotions too. Or conversely under the guise of safety for the group or that being the reality of staff-client relationships. But I won’t.

I’ll end by saying that, at least, on Tuesday I had a good day cooking curry for my side of the home. That’s what I mean by day-to-day quality of life: having the ability to prepare my own food, for example, or choosing what I’ll have for dinner. Of course, the other residents didn’t have a say in my choice to make curry, but they did appreciate it. We’re a long way from people in long-term care actually having meaningful lives, but this felt like a tiny contribution.

Things I Appreciate About My Current Care Home and the Care I Get

Posted on by Astrid

Hi everyone. I tend to lean towards pessimism about life in general and my care is no exception. However, I do feel that there are definitely positives about my current care home and the care I get. This evening, I’m struggling a bit with mistrust. It’s sometimes hard to realize that my staff truly want the best for me, but they do. For this reason, I’m using this post as an opportunity to share the things I appreciate about my care home and the care I receive.

1. My room. When moving here from the intensive support home, I was cautioned that my living space would be much smaller here. It is, but this I see as a positive rather than a negative. I only have one room as opposed to a separate living room and bedroom, but this means I can actually find all my belongings in one place. My room is large enough for all my stuff and this was something I hadn’t expected.

2. The lawn/yard adjacent to my room. I have a little terrace that I have a table and two chairs on, as well as a large lawn. I share it with the resident in the room next door, but she doesn’t use it at all.

3. The fact that I could choose the color for one of my walls. Okay, they didn’t have my favorite color, lilac, but I can’t see it anyway and my spouse, who can, thinks pink is much better.

4. My one-on-one support. It’s not perfect, but it’s as good as can be given the current circumstances. I have enough time for day activities.

5. The fact that staff don’t push me to be more independent than I can be. I had a pretty bad experience with this at the intensive support home. For example, staff would ask me why I was independent enough to climb over my fence during an outburst but not independent enough to tell the shampoo and shower gel apart when showering. As if these two are in any way similar! And even if they were, I’m autistic and struggle massively with executive dysfunction, as well as my energy level varying significantly from day to day.

6. The fact that the female support coordinator makes most decisions for me rather than the male one even though she is actually responsible for the other side of the home. I have had some issues with the male one, who isn’t the most socially adept, and I’m so glad they were able to make a working arrangement.

7. The fact that I get female staff for my personal care all the time. I’ve always made it very clear that I don’t feel comfortable with males helping me with this. However, at the intensive support home, I was often told I either could accept the male staff or figure out a way to do said task independently, even when there were female staff available.

8. The fact that staff have agreed not to assign me unfamiliar temp workers unless absolutely necessary. At least, that’s how most staff have explained it to me. The male support coordinator corrected me when I said I’m happy that as a general rule I won’t get unfamiliar temp workers, so now I’m not sure whether I was too optimistic. It’s still early days too, but I’m trying to be grateful.

9. My two assigned staff. Both are female, one being in her sixties and quite experienced and the other a young student staff who however has a lot of knowledge. They both have my best interest in mind.

10. My signaling plan. A signaling plan is a plan that details the various phases of alertness or emotional stability in order for everyone to help the client prevent emotional outbursts or other states of over- or under-alertness. My support coordinator at the intensive support home had herself changed mine without my knowledge or consent. Thankfully, I was able to retrieve the one I had in Raalte and we were able to build a new plan based off that.

11. The fact that, if I have concerns, I can E-mail my assigned staff and support coordinator and they’ll take my concerns seriously.

12. The fact that my fellow clients are a lot less disruptive than the ones at the intensive support home. I still experience overload from the sounds my fellow residents make at times, but it’s manageable.

13. The fact that I won’t be kicked out of here. I’m not entirely convinced of this yet – no, scratch that, I’m not convinced of it at all -, but at least so far my staff are saying they’re happy I’m here.

I’m linking this post up with Thursday Thirteen.

Appreciating the Five Senses

Posted on by Astrid

In Journaling with Lisa Shea, Lisa asks in one of her journaling prompts on gratitude to name our favorite sense and describe in detail what we appreciate about it. I couldn’t possibly pick one sense, so instead, I’m going to describe what I appreciate about each of my five senses. Yes, five, since I am including sight. Here goes.

Sight

First of all, I obviously appreciate the fact that I could once see colors. I am no longer able to see those, but thanks to my sight and my imagination, I am still able to perceive them synesthetically in my mind’s eye.

I also still appreciate the tiny bit of light perception I still have left. Thanks to it, I can see the sunshine, though I can no longer perceive the beauty of a sunrise or sunset.

Hearing

I appreciate my sense of hearing, because it allows me to listen to music. I love all kinds of music, from upbeat songs to dance to, to quiet instrumentals.

My hearing also allows me to hear the sounds of nature, both in real life and as soundscapes on my phone. I particularly love water sounds, such as streams and waves (not rain!), as well as birdsong.

Touch

I’ve covered most of the reasons I appreciate my sense of touch when I wrote about my hands. However, other than my hands, I also love the sense of touch on the rest of my body. I am a true lover of deep pressure, which is why I have a weighted blanket.

I realize now I should’ve included a separate heading for the vestibular sense. However, it is mostly the sense of touch I appreciate about it when I am on a swing or waterbed or the like.

Smell

Well, do I really need to explain? I’m going to mention essential oils of course! When another blogger asked us which sense we’d let go of if we had to choose one, after taste (which I’ll get to in a bit), most people said smell, but I said hearing. After all, I really can’t imagine having to let go of my beloved essential oil scents.

Taste

The reason most people chose taste to let go of first, is that in essence what we perceive as taste is mostly smell. However, for the sake of this post, I am going to assume that my food tasting is an actual sense of its own. I really appreciate it, though to be fair I’m more of a food texture lover. In terms of both taste and texture, I am undersensitive, in that I need a lot of stimulation to feel satisfied. This is one reason I can’t stand mash. But I love tasting good, spicy food.

What do you appreciate most about your senses?

Linking up with #LifeThisWeek.

The Most Important People in My Life #Write31Days

Posted on by Astrid

Welcome to day 13 in #Write31Days. It’s getting harder and harder to keep up with the challenge, but I was reminded by my husband not to give up now that I have nearly two weeks’ worth of effort put into it.

Today, I’m making a list of the most important people in my life. I’ll also explain why these people are so important to me. I tend not to come across very appreciative of wht people mean to me. I mean, the people in my life right now are mostly very supportive, and yet I don’t tell them so that often.

1. My husband. Do I really need to explain? I first met him in 2007, when I was struggling to hold on living independently. He supported me throughout my 9 1/2 years in the mental hospital and through the nearly eighteen months we’ve been living together now. He also fully supports my choice of trying to get into supported housing, even if it means we can only see each other on week-ends. He’s also just the most loving person around. Hubby, I love you!

2. My in-laws. As regular readers know, I am in low contact with my own parents. For this reason, I’m all the more thankful to have my in-laws. My mother-in-law particularly helps me with important meetings and with other decisions I need to make.

3. My home support staff. I first met my support coordinator in August of last year, when I finally got approved for home support. At first, she mostly just monitored my care with my old support worker, but eventually, she had to step up more. She now sees me usually once a week. My new support worker – the old one was moved to a team in another area – sees me twice a week. They’re both very supportive and skilled and especially my support coordinator goes out of her way to help me.

4. My day activities staff. My assigned support worker is one of the nicest staff working at that group. Not that the other staff aren’t nice, but she is the one who most truly gets me. The other staff truly try too. I am so glad to be here. Now I must say my old day activities staff were nice too, but they weren’t equipped with the information to properly support me. Besides, the manager was probably more stacked against my “psychiatric” needs.

Who are the most important people in your life?