Carer stories

One of the most powerful ways for carers to discover how to manage their daily lives is through the stories of others. Learning from the experiences of people in a similar situation can open up opportunities and inspire new ways to find a balance in life.

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Elena’s Story

Elena moved with her mother from Australia to care full time for her Grandfather who has Vascular Dementia. She took on the full responsibility of supporting her Mum to care for her Grandfather, whilst struggling to study and manage her own health problems.

My Grandmother passed away in 2005 and we soon began to get concerned about my Granddad – something was not quite right. We would get confused phone calls and he seemed generally low and disorientated. My family agreed he needed us on hand to care for him, so I travelled back with my Mum to the UK, whilst my Dad, looked after the house back in Australia.

On arrival, we found the situation was worse than we had thought. He clearly hadn’t been eating properly and he was unkempt and not the Dad that Mum remembered growing up with. He had always been full of stories and jokes, was a lover of music, theatre and reading. Now he seemed angry and depressed, a different person.

It was a big change for me, when I wasn’t at college I had to help my Mum to care for my Grandad, as she couldn’t afford to pay for any extra support. On a daily basis I would cook his meals, wash him and help with the chores around the house. And because it was important to me that Mum got some time off too, I gave up nights out with my friends so I could keep him company in the evening and put him to bed.  My friends were fantastic, so supportive, but sometime I just wanted to be a normal teenager; even if they came over for dinner I would still need to feed Grandad his meal at the table too.

Though it wasn’t just about the practical care, I tried my best to support him emotionally too.  My Grandad was born in Italy and moved to the UK in the 50’s, it was really important to my Mum that as part of his care that he didn’t lose his Italian culture and heritage. So when he began to lose his English skills, to keep communications open, I learnt some Italian so I could still talk to him.

When my Mum heard about Carers Gloucestershire things got much easier.  Carers Gloucestershire gave her the advice she needed to get the benefits to help us financially, and support her in finding Grandad the right respite care. More importantly the support groups and forums, meant we were both able to meet up with other Carers and talk about our feelings with other people who understood how difficult caring is.


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Daphne’s Story

I worked for over fifty years as a Chartered Designer in the field of Art and Design, both in the UK and USA. Thirty four years ago I became a Carer. My husband left himself with severe cerebral damage to long & short-term memory after an attempted suicide. I struggled through the next twenty years with no help or support; I just tried to cope. Finally, when my own mental health deteriorated and I was going through a break down, a friend pushed me into action.

I wrote a letter to the Head of Social Services about the lack of support for my husband and the consequences for her as a Carer. A Social Worker took me through a Carer Assessment which explores the Carer’s needs and tries to identify possible support. I was also told about Carers Gloucestershire and began to get advice, respite and space to recover. Above all, I was finally able to talk about my experiences and I went on to put my energy and anger into representing other Carers.

There are some 60,000 Carers in Gloucestershire and they deserve representation by experienced people. I hope I have put my experience to constructive use for a better deal for Carers and I have seen great improvements in Carers Services over the last fifteen years. I’ve can seen change taking place, met other Carers with similar and different problems. I’ve made new friends who understand my situation and met some amazing people.

My message for Carers is, Don’t wait until you’re at the point of crisis, like I did. Even if you don’t need it now, find out what support is available for the day you might need it. And never feel that asking for help is a sign of weakness. In short, every Carer should have an equal opportunity of recognition as a Carer & a right to all the information whatever their circumstances.


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Val’s Story

In the beginning I felt very isolated. I’m the carer for my daughter, who was born with Down’s syndrome. So, my carer ‘journey’ began with finding out which organisations would be involved, which is daunting in a sense.  She was nearly a month old by the time they diagnosed Down’s syndrome. I was shown leaflets and told ‘you can have this’, so you’re just thrown in the deep end. Really you’re given the worst case scenario for your child.

So when you set out on a path with a particular illness and as you go on, it’s a maze – there are so many possible routes. If your child has this illness combined with that particular complication then go this way, if it’s a different ‘cocktail’ of conditions you go another way.

I think It was a health visitor who introduced me to another parent of a child with Down’s syndrome, who helped me with who I should be contacting. Basically, it felt like you were given a huge amount of information and then left to your own devices.

It was like I’d been walking around with my eyes closed – now I had an awareness of my surroundings, of what to expect. And when I was introduced to Carers Gloucestershire a lot more doors were opened.

This was a real relief for me because I could attend training and workshop sessions, get to meetings, things I could actually do. I’m an outgoing person, so being in and isolated isn’t me.


If you need support in your caring role then call our Carer Helpline on 0300 111 9000 or Contact Us.