Years ago, I worked for the local Social Work department, as a clerical/admin/departmental secretary. When I worked in Social Work I didn't understand why anyone would refuse the help the SW could provide, or refuse to provide the information requested by SW to do their jobs. And, during my time of transcribing reports and action plans, I learned the buzz words.
Now, over a decade later, I once again realise why I'd rather not be involved with SW if at all possible. When I first organised for homecare for mum, after I'd torn ligaments and muscles in my shoulder and chest and my sis had done had back in, it was almost a relief to get help, to have someone else around who could do the helping to wash/shower/toilet and dress (but not lift if Mum fell, oh no, that was still on me/us). They provided us with a proper bed for Mum, proper aids and helped with adapting the bathroom so it was more "mother" friendly. But I also had to fight. It was inferred that because Mum was 80, at the time (she's now 83) it was a waste of SW resources to do much of anything except provide a profile bed. I know they're not allowed to say such things, or to imply it - that's ageism. So I used what I knew and I managed to argue for the things Mum needed.
Free Personal Care is only available in Scotland, it's not means tested. It is funded by the Scottish government through local authorities. So, to access it, one has to go through the local authority.
In April this year we had our first "review". Three years after care started. I thought it had gone quite well but then we got the paperwork through and, oh my, the emotive language and statements. And, the presumption that I would provide to Social Work, simply for their records and no other reason, full disclosure of our household finances. Nosey buggers is the politest response. The paperwork is horrendous. The "support plan" is ridiculous - no one from Social Work contacts me to find out how I'm managing as primary carer. No one from Social Work offers me the slightest bit of useful help and yet, according to their action plan I am fully supported.... Yes, I could contact SW myself but, with no named worker, I'd have to explain again and again and again and again the situation and what I needed. Have you ever tried condensing 15 years of issues into 3 or 4 sentences without leaving out a vital piece of information? It's like when Mum, or dad, gets admitted to hospital. You explain 3 or 4 times to different people (all of whom write it down) what's wrong. It gets to feel as though they're trying to trip you up, make you admit something or reveal something which would all them to refuse treatment. It's an absolutely awful set of circumstances and yet you're not permitted to express anger or frustration because "they're only doing their jobs" - aye right! Yer no readin' the notes, so are ye really daeing yer job?!!
Now, 6 months after the initial review, we get through the amended copy. It does read a lot better. I have refused, point blank, to deal with their financial assessment - Free Personal Care is still free, the charge for equipment has been paused (& no one knows how long for), and was to be a flat fee, not means tested - so there is no reason for anyone in SW to know our finances. Makes me sound like I'm hiding something, lol. I'm not. I just refuse to do the work because someone is being curious.
Being a carer is hard, demanding, emotionally and physically draining. Having to deal with officialdom adds a whole new oppressive layer to it.
When I reach the stage of not being able to care for myself I'll have no one to do it for me, no one to fight my corner and stand up to medics/dentists/opticians/social workers. When I reach the stage of not being able to care for myself, I don't think I'll linger. Better step off the bridge and find the next adventure to go on rather than stay here and dwindle into a moldering heap.
It's my tale and I'll decide it, I'm pretty good at making stories up as I go along.
Quite depressing really, but I'll always be a unicorn farting rainbows.
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