Does anybody here have a caregiver?

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Have you ever had one?

I was institutionalised in secure units for a while because I went insane with the intensity of the adulthood abuse I got after a whole childhood of severe physical/sexual/etc abuse and severe psychological/emotional neglect. That was one part which I could barely call "care" but technically I did have responsibilities dramatically reduced. I was put in mental health council supported housing (not autism as the criteria here are mega strict and barely anyone gets in unless they need like constant monitoring etc which I would have fought against). My adult mental health team retrospectively (obviously not officially but they said basically that's what happened) diagnosed me with reactive attachment disorder (which is a childhood diagnosis, if you don't know what "reactive attachment disorder" is I suggest you Google it, also in the ICD-10 you can be diagnosed with it when your diagnosis is "childhood autism/autistic disorder", which is my diagnosis, which is what I have and not autism spectrum disorder or Asperger's, I think that's weird but anyway) and oppositional-defiant disorder (also a childhood diagnosis here at least). This is a terrible combination for being put in any care situation (if it has the word "care" in it, I'm out of it with a violent explosion, I hate being cared for, love of any kind is terrifying and not to be trusted, and this day as I type this I have finally reached a year of social services leaving me alone and me being left entirely to my own devices and the authorities finally not caring that 5x this year the police wind up to my mental health crises calls, at least no tasers drawn this time, I'm in the UK just to let you know, I just want to be left alone, not given attention, and I'll run a mile if you say you love me or want to care for me).

Anyway I was in mental health supported housing for all of 6 years before they kicked me out, they have a high bar for kicking people out but they had enough of me melting down and freaking the f*** out because I wanted to be left alone, but I didn't have enough independent living skills to do so, so it was a huge self-battle. I was then dumped in my dad's unoccupied property that he was going to sell later. It was the steepest learning curve ever and I used my self-motivation to be left alone to learn fast how to live alone. They tried support workers on me a few times, but then they cottoned on to my history of locking support workers out of my flat, screaming "leave me the f*** alone" and then calling the care company and removing myself off their list behind my social worker's back.

I moved to another borough and social services got really interested in me (oops my bad given that the police kept getting called to my flat or me in public when I kept losing my s*** - I have severe mental illness and tbh I'll be honest I'm glad I am in the UK in this situation given what could have happened) and I had to use my intellectual abilities to make social services lose interest in me. It is now 2023 winter and I have had no social worker for over a year, and my GP (family doctor) is an excellent GP who works WITH me and not against me, and doesn't report my flat having no central heating for 18 months (14 Celsius is fine for a flat personally, I am cold resistant) because multiple reasons of me refusing engineers in here for 9 hours in one go and not wanting to pay gas (natural gas) bills so don't generate gas utility bills, my flat being, erm, severely customised by me drawing and writing all over my walls, my technical self-neglect (I actually do look after myself, I just choose to shirk certain things), the fact that I have 1-3h face to face human contact a week (I chose that!), and the whole concern that I'm refusing medical investigations repeatedly and staying away from doctors (I think you can gather, my GP and the private psych I am usually owing money to because I subsist on government benefits and small eBay sales) are the only two doctors that don't want me gone from their list, and I give them the satisfaction and my mental health, by avoiding medical investigations and me having any attention drawn to me) etc etc. Social services called me recently after I had another crazy incident when I was not medicated for a bit, and I actually tested it out, I told social services about all of that list, but then said "human contact makes me feel violent" (it does, just stay away from me, I don't need you anyway kind of stuff) and they ended the call with "no action". Hell yes!

So my case is very bizarre and I suggest you read up on reactive attachment disorder if this is confusing, and also consider what happens when a kid's only "socialisation" is a severely drunk mother who drink drives her to school until I was 7 and went to school 10 miles away by public transport (permanently excluded from state school, go figure) because of that, and she abused the s*** out of me daily, including sometimes getting the empty wine bottle out to bottle me (smash a bottle on my body) and my dad was pretty much absent from my life due to business, but we are actually pretty good these days, he is the reason I live here, and he knows also to only involve with me if I ask him to, and I don't ask him for anything really, I am fiercely independent despite having extra brain damage now as well as the congenital stuff as a child.

Yes and no
Technically my mother is my caregiver, she makes sure I take my meds and keep up with appointments.
In 2018, I hyperfixated on something untill I needed to be hospitalised because I wasn't looking after myself properly. It was my mother who intervened and suggested that I come stay with her for a while, I'm still with her, and govermnet records list her as my carer.
But, she also has arthritis, so it kind of works out. I can help her mow the lawns and such while she helps me be sane.

I don't know what I would do when she's gone, I've looked into group homes, but the stories I've heard from people in this accommodation have put me off.

I used to have one when I broke my ankle. I’m trying to get another caregiver.

my spouse is my un-official care giver. He provides structure and predictability in my life, I can't create it for myself. He takes care of finances and supports me in so many ways, my diagnosis at age 68 said I am autism 1 level, but without him, I would have died in a gutter somewhere long ago. I expect without him I am probably level 2. It has taken me a long time to understand how deeply disabled my autism makes me, in so many ways. It has been a relief to finally understand "what is wrong with me" and I am so grateful I have him in my life.

I wish I had a caregiver. My life would be so much easier. I keep fighting through life doing things for myself and I end up taking 3 hour naps in the afternoon. It would be nice to have someone to help me clean my place, pay my bills, do my laundry. Other people need one more than me according to the system.

Technically, no.

Yet, I will have plenty relatives available should the need ever arises.
They're either experienced caregivers or nurses or at least are involved in the medical field one way or another. And in some cases, more.


Preferably, I don't want to.

I don't need that much of a help.
I just need a direction or a set of instructions of how to go or do whatever, and I'll do it myself. Else, I'd rather do stuff alone.

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I've never needed one in England, but to some extent I suppose my wife is some kind of a caregiver to me when I'm with her in the USA. Things are different in the USA - e.g. the tax system for foreign nationals such as myself is way too complicated for me to understand. Until we moved to a place where it's possible to walk to Walmart, I couldn't even buy food without getting her to drive me there. Apparently there's also some kind of a legal requirement coming up that will force me to buy into health insurance, and I've no idea how that works either. My wife's health insurance is horribly complicated, with bits of this and bits of that, and there's even something about if she stays more than a certain number of days in hospital then either she discharges herself for a day and then goes back, or starts having to pay thousands per day out of her own pocket. I'm just not used to that kind of thing and my brain balks at the idea of ever being able to fathom it. But the assistance thing between me and my wife is fairly reciprocal, because I put a lot of money into the collective pot.

Meanwhile, when I'm back in the UK, I'm still completely independent. Taxes take care of themselves, healthcare is free if you can get it at all, and as I live in a city it's easy to walk to the shops or get a bus or a taxi to wherever I want to go. I've got pensions coming in that are still enough to pay for everything I need.

Independence and dependence is a funny thing. It can turn on a hair. Everybody is interdependent really. If a service provider stops providing, it can create a terrible mess for those who might never have even noticed that they were depending on it for very important things. For years I used to get my groceries from a supermarket in town. I used to walk or cycle there and back until it closed down and left me with the task of finding an alternative and working out how to get a bus there. I suppose the only true independence is when you're living off the grid in the forest as a hunter-gatherer or something. And even that comes unstuck when you're too old and infirm to keep it all together.

Still, for the time being I seem to be able to care for myself with regard to most of the generally-accepted things that are the hallmarks of what we call independent living. But it looks rather brittle and precarious to me.

No, I have never had one and don't want to.

To find a qualified reliable medical care provider is super hard, but I imagine it can be done. My spouse is my "caregiver", albeit it's mutual. I could not have sustained the lifestyle I have (job and children) without an actively supportive partner. He is executive function support 100%: He is the first responder to avoid or manage my meltdowns and he does the grocery shopping, cooking and laundry, etc. I have a friend who hired a virtual assistant who she has only every worked with online and that person is her trusted executive function support. Have you had one or are considering one?

No. I'd likely qualify for one but they're about $200 / hour.

I used to have an official paid carer, until that was reviewed to be ended and the council started to focus on children and younger adults with the same complex needs.