‘Older carers: invisible but invaluable’ by Antony Smith

  • There are 2.8 million people aged 50 and over providing unpaid care in the UK, including 5% of people aged 85 and over.
  • A quarter of all carers aged 75 and over provide 50 or more hours of informal care each week.
  • Carers save the UK economy an estimated £87 billion a year.

At Age UK we hear from many people in later life who are caring for a spouse, partner, relative or friend. Although many find caring rewarding and an expression of their relationship, carers also tell us that they feel invisible and undervalued. Many are stressed and exhausted. Here is an excerpt from one of those personal stories.

Jenny and James

“James and myself were both looking forward to spending our retirement together, but four months after I retired, James became ill and was diagnosed with memory loss caused by depression. Five months later he became ill again, almost overnight, and was hospitalised. He was 71.

“Eventually I was told, because James had Lewy Body dementia, I’d never be able to look after him and that he had to go into residential care. With a nursing background, I thought I could care for James at our home and believed this would be better for his mental wellbeing, but no one listened.

“Once a social worker was assigned to our case, he said he would try and enable a care package where James could live at home with me. However once our financial assessment was done, and we weren’t eligible for funding support, we were left to get on with things ourselves. I set about arranging a care package, but it was a complicated task to do with no guidance. Luckily, I’m able to use the internet, but I dread to think how I would have sorted anything without it.

“After nearly three months in hospital, James finally came home in Feb 2011.

“Being a carer is exhausting – from the moment James wakes up he needs help with everything from moving and getting dressed to washing and going to the toilet. When I don’t have night cover I’m up about four times a night and can’t sleep during the day as James needs someone with him all the time. Because we hired support workers independently we have the same ones nearly every time. I think that’s really beneficial to James, as changing faces can be particularly disorientating for someone with dementia and they perform very personal tasks.

“I take James to a day centre twice a week and this is welcome relief for me. Unfortunately we’ve just been informed that because of local authority funding cuts the centre will close next year. There are about 20 of us who use the centre, and James really enjoys his time there.

“Every six weeks I also put James in respite care for a week, to give me a complete break. Unfortunately on his most recent trip when I went to collect him he had no shoes on, his glasses were missing and he was wearing someone else’s clothes. I could tell he was frightened and he had bruises on his body. When I got him home I discovered he’d lost 8lbs in seven days. I’ve made a formal complaint and am waiting to discover the outcome, but things like that shouldn’t be acceptable and obviously I haven’t felt like I could put him in that respite home since.

“I feel I have managed to come to terms with my feelings of loss and bereavement concerning James, which were overwhelming at the start, and I just have to get on with things. I try not to think about the future. James is getting weaker, and I’m getting older so I don’t know how long I’ll be able to manage and I don’t know what will happen when our money runs out.”

Age UK Is calling for more support for older carers – from government, local authorities and health professionals – such as a Carer’s Allowance for pensioners, a choice of appropriate services and regular carers’ health checks. You can find out more about our work to highlight the support older carers need, as well as the recognition they richly deserve, on Age UK’s website.

Antony Smith is Development Officer for Equalities and Human Rights at Age UK Antony.Smith@ageuk.org.uk

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