I feel ashamed about what others think of me, after all I look well don't I, ashamed I reached a point where the simple task of trying to get myself clean and dressed in a daily basis was leaving me so exhausted and broken i couldn't manage anything else and I was beginning to avoid doing it, spiralling down into a cycle of spending days in my jim jams and not going out and my husband having to help me and getting upset as i became more and more distressed. Shame is not a good feeling to have.
That knot of anxiety i try to suppress every time i open my door on care days to see if its a carer I know or yet another stranger - Ive blogged before about it, but i tried to make light of it. I'm a size 22, Im not very body confident and I loathe having to get naked in front of someone that isnt my husband. A cruel voice in my head chips away about what they think of me piling on my shame not only am I disabled but im a fat disabled too. I cover my embarrassment by being chatty and light hearted covering up my fears and frailties - see look im ok really, but im not and the absurdity cannot be ignored.
The decisions made by the care agency, perpetuate the sense that im not important, they rota staff on back to back calls safe in the knowledge they can use the "oh but we are allowed a 30 minute lea way" to cover the fact they allow no travel time between clients, visits timed to the minute with barely time to feel like im cared for, the staff are lovely and do their best but by the time im washed & dressed there is no 5 minute chat with a cuppa - its write in the book and off to the next client who's been waiting 15 minutes already
"Assisted with shower, dried hair, helped to dress had a chat" sums up my care
Poor communication, never knowing who will come or if the times will change or even if they will know my name if I have been added at the last minute - i know my surname is a mouth full but my name is Beth even that would do.
At first it was ok I have to say, I had the same 2 carers week in week out for a few months but recently its begun to change and I have gone from not really wanting it to this a sense of shame that reduces tough as old boots me to a sobbing mess
Having care shines a light on my darkest fears and truths, the things I try so hard to play down despite what others may think my shame is well told story in my life and one I try so hard to re frame, I never asked to get ill and no matter how much i kid myself this is just my new normal its not.
Its all done nicely but scratch the surface just read this blog Lucy in bed blog: SS Review or this one my daft life or this one her name was Gloria I know im not the only one to know the truth Care is not how you might imagine it to be its becomes about process,systems, contracts and decision makers hiding behind their rules and procedures and people like me caught in the Its "My Care my Choice" are left demoralised and just a little bit sadder that we are not truly cared for we are just a name on someone list
If we truly want to change things then we must change the way we view carers, give them better pay, better hours and the recognition they deserve only then will be begin to address the system failure to care.
The next big thing is Integration person centred health and Social Care but how can the system really change when the companies tendering for contracts, commsioners and policy makers continue to say the words but fail to act.
It occured to me after i pressed publish - I also see another side of Social Care - in addition to the agency care paid for directly by my council I also have direct payments. This pays for my fantastic PA - her role is to support me to access the world, she helps with paper work, supports my role as chair of my local Healthwatch, baking and sewing she basically helps me be indpendent and do things i enjoy.
I love that my council has supported this but is also shows in stark contrast my expereince of personal care as outlined above. It was impoissible to find soemone for 1.5 hours of support which means i rely on agency staff.