“I get one bath a week, and I often sleep in my clothes” – Rebecca’s story

Guest post by Rebecca, who has ME and is a wheelchair user. She has lost her entitlement to social care, and now gets no support at all. Here she explains how it has affected her life.

Long hours stretch out in front of me. There’s nothing to fill my time. I cannot get out of the house. I may go many days without seeing anyone.

It’s a struggle even to have a drink; I certainly can’t get to the loo on time. I can only eat things which come straight from a packet.

If I ask for help to do something that isn’t directly about caring for my physical needs, I’m told it’s not possible. No one asks if I’m happy, or if I’d like a social life.

This is the situation I have faced ever since my care package was taken from me.

Losing my social care

I used to receive an hour of care a day where I’d get help with a hot meal, basic housework and a bath.

But when I was reassessed, this care was removed completely. One of the reasons I was given for this was that I was ‘able to use a computer’.

I was told: ‘If we gave help to everyone who just needed a bit of help with their housework, we’d have to give it to everyone.’

But it’s a lot more than just housework. Without social care, I lose the ability to do the things which make me happy, and end up spending all my energy on survival.

Rebecca outside in her wheelchair, holding her dog

How it affects me

I have volunteer carers now who come in to help me when they aren’t working. I get maybe one bath a week, and hot meals four days out of seven.

I often have to sleep in my clothes. I don’t eat properly, which means my medications are disrupted as some must be taken with food.

I was prescribed hydrotherapy about 10 years ago but I have never yet been able to attend, as I have no carer to take me, push my wheelchair, help me undress and dress again.

I’m forced to wipe myself down with baby wipes rather than have a bath, because it’s not safe to bathe myself.

I choose to be happy

I didn’t choose this life, but I still choose to be happy. My cooking and loving and care-giving (which once defined me as a proud and happy wife and mother) have had to be set aside.

But my joys are of lying in my bed looking out at the riot of summer turning to autumn in the countryside I love.

My joys are my warm dog snuggled against me under the blanket, or the total trust and love of the parrot I adopted climbing on my arm, asking for his head to be scratched.

It is not an easy life-lesson to learn that no matter what happens, I can still choose to be happy. I just need more direct care, more stability, less financial uncertainty and a lot less stress.

We’re calling on the government to provide more social care funding for people like Rebecca. Find out more, or tweet us using the hashtag #carecrisis. 

7 thoughts on ““I get one bath a week, and I often sleep in my clothes” – Rebecca’s story”

  1. It’s a sad sad situation that is going on in the world, so many charities asking for money to send to other countries but what about this country? What about the needs who are in this country?

  2. Hi this is abosolutly disgusting what they have done to this lady and in general to other people this shouldn’t be allowed, if I could help in anyway when I’m not working.

    1. It sure is I sympathise with her and would help her if I lived near her Evan though I have medical issues myself if you type. In Google man hit by bus on Kensington I was 44 and suffered from depression the next thing I remember was awaking up with a tube down my throat and I was cathetarized I found out I had been run over by a bus I broke my. Spine and vertices c6 c7 in my neck its 4 years on and I am now in a 2 bedroom flat in supported accomadation. I had a halo fixate on my head for 3 months I am very forgetful now with neurological damage but my way off coping is thinking there’s plenty of ppl worse of than me I already had arthritis in my hip joints and in my legs but at least I can shower myself but I have to have someone in my flat why I shower my brother cooks for me as I forget and burn the pans I wish you all a very happy new year to come anyone want to talk I’m here god bless you all my phone is unlimited talk so if you need to talk I’ll return your call mark

  3. I Too have Carers to help me in the morning, they strip wash me at the kitchen sink, and dress me in the lounge. I am also in a wheelchair and have one bath per week at Douglas House LCD In Brixham. my story is on Twitter and also on YouTube. Stay safe xx Sue Frier

    1. Thinking of you and all with illnesses it is disgusting you would get more money of the govemwnt if your from Romania I thought charity began at home the go enemy don’t care as long as there getting there wages and costs and get 2 houses

  4. The system as it stands now is absolutely wrong and situations for vulnerable people is increasing getting worse. No one knows what goes on behind closed doors in their communities. The more cases that are brought to the publics attention the better. Maybe, just Maybe, the system will be held to random to change. For the Better Not the Worse.
    Please let be very soon.

    Carole. London

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