Will try to keep this as brief as possible but it's complicated and I'm stuck in a nightmare. Have name changed as it's very outing but must include details so it makes sense...
I work as a PA for a disabled person (lets call them Sarah) funded by Direct Payments from social care. Sarah has a very severe physical disability. I'm one of a team of 6 who provide personal care, do housework etc. We're all on part time contracts but expected to be potentially available from 7am-11pm, 365 days a year. (Actually, point to note - potential new starters (job has high turnover) are apparently allowed to be unavailable certain days, which doesn't seem to apply to everyone.) I've worked in this job just under two years.
I have autism (diagnosed as an adult) which I disclosed at interview. I don't have problems reading body language or other "obvious" traits but I do struggle. This has been a very difficult year for me in various ways, and unfortunately work has majorly contributed to that.
I ended up having two months off sick in the summer after reaching complete (autistic) burnout - the first couple of weeks I couldn't really hold a conversation or eat properly or anything. I also struggled with suicidal ideation.
I returned to work and had to deal with a harsh/antisocial timetable as well as a very upsetting meeting where I felt overwhelmed and unable to speak up for myself. I managed to continue for a while and thought it was going to be ok but have ended up breaking again and being signed off again.
Obviously the fact that my boss is the same person that I provide care for created a very unusual, and now difficult dynamic. In another job I'd feel more able to stand up for myself or ask for reasonable adjustments that actually help, but I feel I can't say anything and am treated as though it is a personal failing to be off sick or struggle in any way, and directly against my job description to not completely willingly and smilingly serve, or to cause any stress to Sarah. I feel frozen in fear and swing between feeling angry and guilty.
It wasn't like this when I started. Some things are to do with the dynamic and how it feels and some are actual changes to job conditions. I actually worked about 50% more hours last year (I'm now reduced to contracted hours only), but things are so much harder now despite fewer hours.
One big issue is the timetable. Random, at 2-4 weeks notice. This means you can't book anything in advance to avoid working days, yet also more last-minute things end up being missed because you didn't know to book it off work. This has been a real problem for me this year as I've missed chances to be with friends or do nice things that help my mental health. I'm single, regretfully childless, and live alone so this stuff is important to me not to end up hopeless and isolated. (I did try to explain this when asked to explain at returning to work meeting what had led to burnout, and was told by Sarah's relative (there for her support) that "work comes before social life". This comment is haunting me.)
When I started this wasn't so much of a problem as we could ask not to work on specific days/times if we'd something planned, and our hours would be timetabled to avoid these. When short staffed we were encouraged to do this rather than take holiday (which we'd get paid for if not used). We we told this would change when there were enough staff but it's gone too far - on a 16 hour contract (a full days work is 12 hours) I'm expected to take holiday just to ensure a specific afternoon off.
Another issue is expectations that contradict. For example being told we can't book any holiday when short staffed earlier in the year, yet also being told I should have taken time off sooner to avoid burnout. I used to feel valued and that there was give and take, now I feel like a failing servant.
I should say - I was actually good at my job and also at providing last-minute cover, but the conditions are killing me now.
I had an occupational health assessment a week ago (triggered by summer absence) and it has been recommended that I be given a fixed working pattern as a reasonable adjustment. I seriously doubt this will be considered "reasonable" and pretty sure I'm about to be fired. (Another point to note - one staff member is given one regular day on the timetable, but no one else is. This is Sarah's preference.)
I've been summoned to a capability hearing, with six days' notice. This is at work (Sarah's house). I've been told I can take someone with me, but I don't think there is anyone who is actually suitable to accompany me, let alone at such short notice.
I cannot go to this meeting - I have to manage things in my life to avoid meltdown or shutdown, and atm I'm on the edge all the time. I cannot ignore the warning signs of meltdown, I have to keep myself safe. I'm terrified I'm being forced to do something that will make me ill, and that I won't be able to keep myself safe to get home or afterwards. It's been so long since I had a public meltdown and I can't bear the humiliation and pain. I know very few people who could even cope seeing me like that, so can't ask for support.
I don't know what the hell to do.
The awful thing is that is it work that is making me feel so horrendous. Every time I start to feel a bit better or think of a sensible way forward (for example cutting hours to one, regular day of the week, plus continuing to provide short notice cover on occasion) I get another email that makes me feel terrible and too scared to say anything. I had one this week telling me I was compromising her safety* because I hadn't provided a sick note fast enough so she didn't know whether to get cover. This was after keeping her informed how long the note would be for, chasing up the GP, and a delay on the GPs part. And the occupational health report that stated I would need 2-4 weeks more off.
[*This is concerning as she previously mentioned/threatened I could be put on the POVA register (like child protection but for vulnerable adults) for compromising her safety by becoming unwell on shift (she also seemed really displeased with me immediately calling for emergency cover once I realised I couldn't continue).]
Sarah has also previously stated that my emergency contact is insufficient as I don't have someone who can drop everything and collect me from work, and that I should have someone who can help sort sick notes and communicate on my behalf (this was from when I was first off in the summer, and couldn't really think or communicate). I don't have someone who can/will do this.
It's so upsetting and frustrating that I am expected to have some sort of upaid carer always available, whilst Sarah - who has an actual care team, family/husband around who can help is supposedly in grave danger if a member of the team is off.
I feel angry that I am being set up to fail by a meeting I cannot possibly cope with (presumably so I can be fired without notice), and that my job conditions have changed to the point I can't continue, that expectations have pushed me over the edge, that I can't ask for actually helpful reasonable adjustments, and that having a disability and trying to manage it is seen as a personal failing (by another disabled person!), and that expectations are contradictory. I used to feel that the job, and Sarah, were wonderful, now I feel I accidentally joined a cult I'm about to be kicked out of for not being sufficiently devoted.
If it was a company I'd be fighting for my rights (and hoping they would pay me off tbh, it's too toxic to go back) but as it's a disabled individual I feel like a total twat for even typing that.
Sorry this is so long, any advice appreciated.