“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. 

My experience as a grandparent of a disabled child

Vicky Harris is Face 2 Face Co-ordinator for our befriending service at Liverpool’s Alder Hey Children’s Hospital. She believes that grandparents of disabled children, as well as parents, need access to emotional support. Here Vicky shares a very personal experience of disability in her family.  

I have been blessed in my life to have three children and three grandchildren, but I feel there may be more grandchildren to come in time! My eldest child, who’s nearly 30 was born with a very rare physical disability which at times has been emotionally challenging. She has grown into a beautiful adult who I’m very proud of.

Nearly eight years ago my second grandchild Jack was born to my daughter Sammie who was 20 at the time. I remember being so
excited as I had a granddaughter who was two years old, and I was now lucky to have a grandson too. The first time I saw him, he looked so beautiful but I knew something was wrong. Within a wBaby Jack asleep in a blue cardigan and hateek we received the news that Jack had catastrophic brain damage. I have to say I felt devastated. Devastated for my daughter and her partner, and devastated for Jack.

I loved him so much, part of me hoped the doctors had made a mistake but I knew they were right. I was trying to find light in what was a very dark time. We spoke to the consultant and then came crashing down again when we were told he might not live beyond eight years old. He would be completely reliant on my daughter for all his needs. My daughter hurt so much, I wanted to take her pain away and make her feel better but I knew I couldn’t.

As a family, we rallied round. I remember Jack started drinking from the bottle, which the professionals had feared he may not do. This offered us hope, but sadly it didn’t last and he had to be peg fed to help him thrive. We were always looking for hope, then hopes were dashed along the way. Picking ourselves up, loving each other, caring, scared the day we were dreading would come.

As a grandparent I felt almost useless, sitting back and watching the journey unfold, knowing the outcome one day would be having to say goodbye to Jack. I know my daughter hurt, she was a wonderful mother to him. I know she loved him with all her heart, and I wondered if she’d be able to let him go when that time came.

I wanted to fix the situation, change it, make it better. Watching Jack have many fits, hospital visits, but also trying to live this normal life. Enjoying every day, loving him every day, always mindful of how precious his life was. As a family we’d already experienced disability. We knew in the grand scheme of life that disability is not the end of the world. Yes, it can seem a different world at times, but none the less a good life can be lived. With Jack it seemed so final, and we just hopeJack at three years old strapped into his pushchair, wearing a shirt and smart waistcoatd he would stay strong for as long as possible.

My granddaughter Jess loved him so much, she would pretend she was reading him a book and then poke crayons in his ears! She seemed to understand he was special, her bond with him was so beautiful to see.

Sadly, the day we had dreaded arrived all too soon. Jack had pneumonia and was on life support for 10 days when it was agreed it should be withdrawn. My heart broke watching my daughter be so brave in letting him go. When we said goodbye, Jack was only three years old.

I have such immense pride in my daughter, I wanted to spare her the pain, spare her the hurt but no one could have loved him more than she did. We were all blessed to have Jack in our lives, and we’ll never forget him.

Vicky will be starting a grandparents drop-in group in Liverpool next year. Would any of you grandparents of disabled children be interested in attending something like this, where you can meet other grandparents, talk about your experiences, and gain support? Please let us know. 

We are fortunate to have Grandparents Plus on our online community this week, talking about some of the issues Vicky has raised here, and answering your questions.