I'm back?

[jaala]

Due to the deleterious effects of algorithmic social media and the enshittification of Facebook, Twitter, Reddit and Tumblr, I've been trying out Mastodon... and maybe considering returning here? Hello, Dreamwidth world!

To reintroduce myself: I used to work backstage in opera and theatre, had to stop due to COVID, then crashed hard when I tried returning to it in spring 2022. I'm a part-time caregiver for my mother, and still figuring out how to eventually regain some of my own independent life.

Comments

[the_siobhan]

I'm a part-time caregiver for my mother, and still figuring out how to eventually regain some of my own independent life.

It's not easy, is it? I'm doing something similar for my step-father and it really sucks up all the extra time and energy.

Also, hello!

[jaala]

Hello, fellow Torontonian!

Yes, it absolutely eats up everything. I've started to carve out some time away each week, but then I can't sleep at night or focus while awake. Here's hoping things will improve; it's at least nice to have other caregivers to talk to.

[jaala]

P.S. Looking at your blog, I note some other similarities between us. Let me express fellow feeling about that too. My sister also lives in the US but can't move. Luckily (?), I have no step-relatives or other surviving parent and my uncles' health crises are being handled by other family members. I don't know how I'd cope with another person.

I just finished moving my mother from the family house to a two-bedroom condo unit in the midst of her third major surgery this year, so yeah ... house stuff ... medical deadlines, urgh.

Is your step-father in a seniors residence? How do you find that? My mother's condo isn't specifically for seniors but has a lot of them. I'm trying to persuade her to attend their social and exercise activities.

[the_siobhan]

The residence has it's pluses and minuses - if I knew then what I know now I would have insisted on a publicly funded one. He chose a private org and they nickle and dime him for every single thing. Plus since they are profit-driven they are very concerned with their image and they are more concerned about it looks to have certain "kinds" of residents than I think is acceptable. (He came back from a lengthy hospital stay with a catheter and they really didn't want to let him move back in in spite of the fact that their staff would zero to do with dealing with it - I had to show my teeth a couple of times.)

Having said that, many of the front-line staff are genuinely lovely. Most of his day to day help comes from provincially funded Personal Support Workers since he uses a wheelchair and they are absolutely awesome.

I'm always encouraging him to do social events as well, but he's so resistant. I think part of the problem is that he comes very strongly from a background that men and women can't be friends and it's almost all women in the residence.

[jaala]

Mum had a respite stay in a for-profit residence after her knee surgery, and I hear you on the nickel and diming. They kept the fee details vague until actually charging them, and apparently forgot we had already requested internet, laundry, and food delivered to her room as a COVID precaution.

When I moved her out after 28 days--because I already knew they'd try something--I had to wait hours in the lobby to demand they remove charges for "the second month". Then had to come back a month later to pick up the new invoice "because our accountant can't do anything until then".

A few of the staff were sweet and caring; many appeared overwhelmed and stressed. I wonder if those are the places Doug Ford likes to crow about building?

Mum would qualify for PSW help with bathing, but absolutely refuses even to have someone just check in at bedtime. It's mostly women in her condo too.

[kitarella_imagines]

Hello. I am new on Dreamwidth, I put Our Flag Means Death in the Interest box, and your name came up.

Then I saw your post about the enshittification of those social media sites and how you are trying out Mastodon. I hope you like it there, I really love it on Mastodon.

I am also trying to care for my mother but at a distance, it is a complicated situation, so I have an idea how you are feeling.

I hope it is okay to reply to your comment, I don't know many people on DW yet.

[jaala]

Hello, fellow probably-autistic person! It's absolutely fine to reply--sorry it took me so long to respond in turn.

I haven't posted much on Mastodon and don't follow many people or tags there yet. But I tend to enjoy the time I spend there. Sometimes I feel a moment of frustration when it's so easy to catch up on missed toots, but then I remind myself: hey, isn't it *good* I don't have a perpetually scrolling feed?

Thanks for the empathy about caregiving, and I send my solidarity for your complicated situation with your mother. I do a bit of long-distance when I'm at my own apartment rather than visiting her. Usually it takes the form of walking through some computer or phone tasks over Zoom. How is it for you, if I may ask?

Hurray for "Our Flag Means Death"! Despite my annoyance at the curtailed budget and episode count (which I blame on HBO/Warner), I really enjoyed the second season/series and dearly hope it returns. After being introduced to the wonderful and strange world of NZ comedy by "Taskmaster NZ" a few years ago, it was a treat to see those folks showing up in OFMD and especially S2. I follow some fandom activity on Tumblr and Twitter, but was scared off somewhat by the turmoil after the S2 finale.

I see you're a fanfic writer--cool! I'm not a big fanfic reader but indulge occasionally, especially for OFMD.

[kitarella_imagines]

Oh hello! I was diagnosed in the pandemic over Zoom so I'm still not 100% sure I'm autistic. How can they diagnose me over a video screen? They didn't even meet me in person. But I definitely have autistic traits.

I like Mastodon because there is no algorithm and I have to look and find what I like to read. I think it's good for my brain not to be spoonfed. I've got a nice lot of friends on there now. There are A LOT of autistic and other ND people on Mastodon.

You're welcome 😊 My mum has dementia, but she is extremely independent and won't accept help, so I'm mainly just talking to her about daily things on the phone. I'm not good at driving so I can't go to her anyway. So I'm mainly dealing with social workers, banks, lawyers- all the admin side of things. All of those people are so inefficient and slow, it's a nightmare.

Yes I really enjoyed OFMD, although I was so sad at the finale of S2. I'd like to see how S3 goes if they make one.

I don't know how I'd live without writing fanfic, I can't not write. I escape into those worlds when things are difficult, as they often are these days. I have written a few OFMD fics of various rating levels. I mainly go from fandom to fandom, depending what I've watched. I'm not a dedicated fan of any one fandom really.

[jaala]

I'll DM you my Mastodon details. It's my full legal name, which may be a mistake?

* * *

Diagnosis over Zoom is intriguing. I hope the diagnosis such as it is gives you some helpful understanding and resources.

Out of curiosity, if you're comfortable answering, were you able to access it through the NHS? While I'm thankful for publicly funded health care here in Canada, during a working holiday in the UK I found that the NHS covered considerably more breadth. There's some subsidized psychological and psychiatric care here, but it's scant and highly in demand.

My confusing diagnoses:

• "Not quite gifted enough for this public school program" c. 1991. Because I didn't finish the test, ha! Mum, bless her, told me years later how annoyed she was at the tester.
  
• "Non-hyperactive" ADD, math learning disability, anxiety c. 1996. My high school paperwork said "G/LD" (gifted and learning disabled). Teachers didn't know what to make of it.
  
• Nonverbal learning disability (NLD/NVLD) with depression and anxiety c. 2000. This guy was certain I never had AD(H)D.
  
• I suspect a 2010s-2020s diagnostician might have drifted to Asperger's or ASD rather than NVLD, but that's just my personal theory.
  
• After two hours with a psychologist through a COVID-era counselling program, he in turn was certain that I never had NVLD or depression, just mistreated ADHD. But I would have had to follow up privately and couldn't afford it. (And I didn't much like his manner anyhow.)

TL;DR Who even knows? Several AuDHD traits anyhow.

* * *

Oof, I hear you on the refusal of assistance and the ineffiency of service providers. I don't drive at all but there are trains I can take to get to her place in about two hours. I'm doing the same sort of admin--banks, insurance, social workers, GP, pharmacy, various medical specialists. We're woefully behind on lawyer matters following my dad's death... eep, need to get on that now that house-moving and medical emergencies appear to have slowed down.

* * *

I was of course very sad about the OFMD finale, but not in a way that made me want to give up the show. Not everyone feels that way, as is their right. I too drift between fandoms, although generally lurking in my case. Drifting back into "Doctor Who" at the moment...

[kitarella_imagines]

No, I think you'll be okay on Mastodon with your full name. Well so far anyway, it hasn't turned into Twitter yet.

Yes I got my diagnosis through the NHS, but the government here is running down the NHS and trying to move everyone over to private, insurance based healthcare. That is a big mistake IMO but the government just want our money, they don't care about us.

That is indeed a confusing list of diagnoses! I wouldn't know what to make of all that.

Sorry your dad died, it's so sad to lose them and life isn't easy with just the one parent is it. My dad died when I was a teenager so my mum has been on her own for a very long time, I think that's why she's so independent.

Yes there was lots of anger and criticism from fans after the OFMD final, but I thought it was too much. It's what the writers wanted to write, and it's not their fault or the actors' fault. Season 3 will be interesting if it gets made.

I tend to like small, old, unpopular fandoms that hardly anyone else does 😂 So my list of fics is quite strange.