The Supporting Act

Jellihead · May 2019

Welcome to the carer community. We all have our own way of coping. I like to indulge myself in a little "MeTime" corny as it sounds. Having a bath to ease away the aches and pains, I now have osteoarthritis so my daughter, who has Downs syndrome, has become my carer. Just walking to get a paper everyday gives me half an hour to clear my head.

My nightmare's are the form filling! Also the total disregard of Local Authorities care and support plans for carers, as now laid out in the Care Act 2014. It is truly a disgrace. But worse than that you become more depressed, anxious almost to the point of neurosis. The world really does feel as if it is against you. Friends become enemies and you distrust those around you and their motives. My main concern is always the health and safety of my daughter, while LA's seem to think they can implement changes without any risk assessments or provide any reassurance that my daughter will be safe? So why even try to change routines, social activities and educational and health options when they are working to those that may or may not.

Independence is an amazing thing, but most of us care for someone who is extremely vulnerable. The worry of them falling into the wrong mindset or befriending those that can do them either or both mental and physical harm is a constant worry which affects us all.

We all must take as much care as possible by allowing those we do trust to do their bit. Help is there and it is hard to accept it, but we, as carers, need the space to breath and smell the roses too!

odessa · May 2019

Hi everyone ,

That tricky question being a carer .. I’m carer for an. 22 yrs old who has recently diagnosed asd and learning difficulties .. she was born wid learning difficulties and she being maintained in mainstream.. ( I have been a carer for 22 years) .. it being hard struggle and setbacks have been awful . .
As my daughther doesn’t fix criteria in my area - we have never had respite or social worker .. the effect of being a carer without support has been very damaging .. at times it has been overwhelming to be a parent .

I live in outreach area and no services will come in my area . I volunteer to support carers in borough .. I volunteer on carers forum/ panel and struggle on carers allowence only ... it been difficult ...lots ups and downs .

. I’m artist and I find it’s getting hard to enjoy the things I love ..... I volunteer and work on projects to help others but sometimes I think I do too much.

the difficulty I have - that I sometimes think parents who care for children/ young adults are sometimes ignored.. i know in my area it is get slightly getting better as there more involvement with professionals ,,, agency but there still seems to me that I am not heard ..

i constantly worry as my daughter is vulnerable .. I maybe waffling but I think that people who surround me can sometimes not understand where I am coming from ..

Chloe_Scope · May 2019

Hi @odessa and welcome to the community and thank you for taking the time to share this with us all. Don't worry you weren't waffling! I'm sorry you haven't qualified for respite, that must become very difficult. What kind of art do you like to do?

I'm sorry you feel ignored, I hope the community will be able to help with this. We have a parents and carers board that you may find helpful. Please do let us know if there is anything else we can do to support you

foxuk · May 2019

Hi,

At 64 with a lifetimes experience of Caring I am very tired. I started when I could 'go fetch for daddy' and have been a Carer ever since. I now care for 'just' my wife, in the past caring for mum, dad and wife. I am disabled myself having had my benefits upgraded to the enhanced rates of PIP for both Care and Mobility, on transfer from DLA last year.

Carers are ignored and abused by the 'professionals' who interact with us. This has not changed and may never change.

We have no power to object to the worst actions of those who we rely on. How can we take action that has any effect?

We receive no help whatsoever from Social Services who are supposed to contact us every year. The last contact was about two years ago when they were doing a 'heavy' sales pitch on their shopping service, a burglar alarm salesman couldn't have pressed more stress buttons. Of course we would have had to pay through the nose for this.

We contact 'charities' and professionals who seem to think that every sentence is supposed to start with 'All YOU have to do....', and then spouting some twaddle that has already been tried to no effect. Gawds, if I was able to get stuff done why the hell would I be contacting them? There are rare exceptions.

The nearest comparison to a Carer's plight is that of the junior doctors who were on duty for 72 hours before public opinion forced change. I count my 'on duty' time with life or death responsibility in decades not hours as do many other carers.

We were offered 'respite care' about ten years ago. This was after waiting two weeks for a social worker to contact us, following a dislocation of my knee (after the A&E visit I had to cook lunch within an hour). This was NOT a respite for me, it was made very clear that it was so that I could clear my parent's possessions from the house, which they were 'cluttering' in the 'Social Worker's opinion.

I could go on but it's time for lunch..........

foxuk · May 2019

I must add a small addition to the above.

The one thing I find that takes time and is really difficult for me is laundry. This has been treated as a deplorably sexist 'joke' by every female social worker I have spoken to as if it's a 'man thing'. I hasten to add that I am Welsh and come from a line of powerful women matriarchs and was taught to sew, cook and even knit as a child.

I have been asking for over 30 years a simple question. 'Where can I get laundry done at a price that doesn't cost more than buying new (cheap) basic clothes?' Every time I have spoken to a social worker I have asked the same question and never had the courtesy of a return phone call.

And people wonder why I am a cynic.......

The Supporting Act

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