Hi, I’ve just joined to try to be part of the community - hopefully to give help and support as well as receive it! However, right now, my situation is complex and I’m looking for any insights I can get.
I’m a male in my early 50s, and I’ve been the sole full time carer for my partner (female, late forties) for the past year. She has a suspected brain injury as a side effect of medicine she was given in 2020. She’s been disabled ever since, and her condition worsened after a supposedly routine test at hospital in late 2023.
She can’t speak or communicate or get out of bed around 90% of the time. She has stroke like symptoms, and can’t bear to be touched, can’t bear voices or noises or music, can’t bear bright lights, vibrations or certain smells. She is clearly suffering from depression as well, and, I believe, PTSD from mistreatment of her in hospital (on top of the side effects of the medication). She no longer trusts any doctors at all, as they refuse to acknowledge the symptoms she has were caused by the medication she was given, despite the same symptoms being listed as possible in the manufacturer’s own leaflet. She won’t accept any type of mental health support, because she is convinced the doctors will use it to explain away her symptoms, and ignore the physical damage that was done to her.
Going through an ombudsman and trying a no-win no-fee solicitor got us nowhere. We’re on all the benefits we can get (Universal Credit, Disability benefits, Carer’s Allowance).
It’s a complicated situation with really poor housing (we basically live on an industrial estate next to a rough council estate and busy roads); an eldest child with anxiety disorders who is also trans; poverty; isolation (we have no family or friends near us whatsoever); and all kinds of ill health. (My own health has been really up and down as well, which made caring even more difficult. I’ve had to sleep on a camp bed in what is basically a freezing cold junk room for over 4 years now, which hasn’t helped!)
My partner won’t go back to the doctors, does not want outsiders coming in, does not even want our children involved in her care (2 grown up and 1 young teenager), and is either completely vague about what she does want, or refuses anything I suggest. She wants things she can’t have, like alternative therapies that would require her to leave the house or have someone come visit. Nature is the only thing that really helped her, but she can’t walk far enough to get to any actual nature, and can’t even get in the car any more, as the vibrations make her even worse. And this comes from the 10% of the time when I can talk to her at all, or she to me.
In the last week, she’s now cut off virtually her only form of communication with me by getting rid of her phone, and, when she was last able to talk a week ago, was suddenly and inexplicably abusive and told me she doesn’t want me to check on her any more. But she still manages to go to the toilet on her own, she now gets herself simple meals (she no longer eats with us), and she starting reading books again - so she does not seem suicidal, although she obviously borders on that state a lot of the time… I still check on her twice a day, just not hourly. I don’t know what’s changed for her in the last couple of weeks, and have no way to find out.
Luckily, the children are doing OK, despite their mum just being hidden in a room 90% of the time. The eldest is hopefully moving out and going to university, the middle child is starting university (currently at college), but the youngest needs much more than we have been able to provide for the last year. We’ve home educated all children from birth. Everything was fine (but with ups and downs) until 2020. We had no option to try other educational options during Covid, and then I was ill with post viral fatigue for a year before I became my partner’s full time carer!
So… What with all of the above on top of recent changes, I’ve clearly got to do something differently, and soon. I’m talking to a counsellor and my partner’s GP in the coming week. I guess I might need to get an Adult Carer Support Plan (partner refused it before), but it might be too late for that.
I think she needs to go into some sort of care home with better access to nature. Is that even possible? She would hate it, but we’re running out of time and choices. How can you even care for someone who can’t speak or be touched or listen to voices or music? Who also can’t move and is stubborn and suffering unresolved trauma that they refuse to deal with? I imagine people are dealing with worse than me, but I can’t wrap my head around what to do about it all, except call in other people.
If I get social work involved, is that a downward spiral where my youngest will basically be forced into going to Secondary/High School? If someone else is involved in my partner’s care, I can provide education as we did for our other children. I could maybe even re-start the self-employment I had to abandon to become my partner’s full time carer, especially if she ends up being cared for outside of the house.
But the moment I get social services involved, or doctors, or emergency services, if it comes to that - it’s game over for my partner. She will be furious, most probably suicidal. I doubt she’ll recover if she’s put in a mental institution, and she’d never forgive me or talk to me. I don’t want that, but I can see it going down that road unless I can magic up a doctor that she trusts to give her a fair diagnosis…
Sorry for such a long introductory post! Let me know if it’s too long or if I should move it elsewhere, delete it, etc. I couldn’t work out how to shorten it more, and I’ve missed out a lot!
I can’t reply frequently, but will check back on this post whenever I can. Thank you if you’ve managed to read all of this, and thank you if you’re able to reply.
