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Stories of loneliness

At Carers UK we know just how isolating caring can be.

For many of us, loneliness can stem from feeling unable to talk about our caring responsibilities or share our frustrations and fears – we just try to keep going.

It can stem from feeling disregarded – we may look after someone day and night, yet still feel that we're not listened to and have to fight against a system which seems stacked against us.

Loneliness can also stem from dedicating ourselves to meeting the needs of someone else, and putting our own needs to one side. Caring takes up so much time and energy that there’s little left over. Friends can drift away and we just don’t have the opportunity to pursue them.

Right now, too many carers don’t know where to turn for help. And too many are struggling alone because there just isn’t adequate financial and practical support available. Our latest research report shows that 8 out of 10 carers have felt lonely or socially isolated as a result of their caring role.

Darren's Story

Photo of Darren

Darren and Lesley have four daughters – Gabrielle, 19, Olivia, 17, Fleur, 10 and Amélie, 9 who has CHARGE syndrome, a rare condition resulting in multiple and profound disabilities.

When Lesley became pregnant with Amélie both she and Darren were in full-time employment.

Alongside coming to terms with Amélie’s disabilities, they had to make difficult decisions about how they could cope financially, especially when Darren was made redundant.

Lesley works full time and takes on extra shifts, but still the costs of care associated with Amélie’s health are so high that the family has accrued massive debts.

Unable to find adequate practical or financial support, Darren and Lesley feel very alone in a system which seems utterly oblivious to their situation.

Darren said:

"Amélie is absolutely fantastic, she’s an absolute joy. But stress levels are through the roof.

Amélie needs care 24 hours a day, every day and because of her medical needs and the lack of professionals who also have the sign language skills to communicate with Amélie it is almost impossible to get respite care.

We have battled to get Direct Payments from the council to buy in care support and have been given the equivalent of 16 hours at £7.20 an hour. If we could find the right care services, I very much doubt it would be available at that rate.

But if I could change anything it would be the financial burden. Even if everything in the house is going well, there is still that financial worry hanging over us.

I think people assume that there are loads of benefits supporting families like us. But that’s not the case at all. Now Lesley works full time with extra shifts and I receive a Carers Allowance. I’d love to work, but show me the job I could do alongside the care Amélie needs.

We used to have a good social life. I played rugby for my local club and made some great friends there, many of whom are still very supportive. But now buying clothes and socialising are no longer a priority or affordable for either of us."


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A story from a young carer

KDC has been registered with the Hillingdon Young Carer’s project since 2006 when he was just five years old, he is currently 16 years old. He cares for his mother who has severe mental and physical health problems, he is the only child left at home. His mum worries about him constantly and found it hard to allow him any freedom to live his life, and for the first few years, the project was unable to get him to engage.

The project has worked with KDC and his mum over the years offering him respite through clubs, trips, one-to-one sessions and short residential breaks. It has been hard for mum to allow him to take part, but with the help and support of the young carers team, she has been able to let him attend the various events.

Recently we had the opportunity through the London Borough of Hillingdon to send some of our young carers on a week-long exchange trip to Germany, we provided KDC with a passport and worked with his mum so would allow him to participate, enabling him to make new friends from different parts of the world.

A few years ago we introduced KDC to the world of amateur dramatics, giving him the opportunity to do a week with a drama group culminating in a stage show. He enjoyed this enormously, and with the help of a bursary continues to attend the drama school, with his mum's blessing. He has gone on to perform in quite a few shows, taking the lead role in many of the performances.

He has, over time with young carers, developed some good friendships both from our project and outside through his drama interests. KDC has gone from being quite isolated to having a wide range of friends, and is a very popular member of the young carers project. He is currently in year 11 at school studying for his GCSE’s and his future looks a lot brighter.

KDC tells us that when he was younger he felt quite lonely, but since being part of the young carers project he has made a number of new friends and has a healthy social life.


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Pete's Story

Pete and his wife

"As a carer you get used to putting on a brave face. I certainly did, especially at the beginning. I didn’t know what had hit me – I suddenly found myself stuck indoors 24/7 with a woman who looked like my wife, but felt like a stranger.

I lost my business of 40 years and was going bankrupt as I couldn’t work anymore as a painter and decorator, the job I loved and had done for 50 years.

Being at home all day drove me nuts. I needed something to occupy my mind, so I bought my first computer. I didn’t have a clue how to use it. It took me about two years learning bits and pieces off different people.

One day ‘Carers UK’ came into my mind out of the blue – I must have read about them somewhere. That’s how I found the Carers UK online forum.

It took several months before I dared post, but once I took the plunge the response I got from other carers was amazing. These kind, wonderful people knew what it’s like to feel as though you’ve lost your own identity because of caring. It was such a relief to talk to people who cared about what I was going through and understood how I felt.

They did more to help me than they will ever know."


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Caryl's story

caryl_website.jpg

“At night I still reach over even though Tom’s no longer there.

Tom and I have been married for more than 50 years, we have five children together. Tom retired early and for around a decade we enjoyed that stage of our lives. It’s hard to pinpoint exactly when Tom became unwell but it slowly became clear that something was wrong. He would get lost whilst driving as his spatial awareness suffered.

Tom was eventually diagnosed with Alzheimer’s and vascular dementia. He never discussed his diagnosis or what might happen – that was just his way. He was then diagnosed with Apraxia and sometimes needs help to stand. I was struggling to support him in such a physical way, but it was still a shock when a consultant said he should go into a temporary nursing home. I had never thought about care homes.  

I still had hope that Tom would recover enough to be able to live with me. I moved and made adaptations to a new flat, but he was never well enough. I had to put his welfare first and accept what I could and couldn’t manage. I now have a lot of pain in my arms from trying to lift him.

Now he’s settled, I know Tom is happy. He still enjoys listening to music and watching cricket. He often asks me who I am, but I know something in him recognises me. The other day he asked me who I was and I told him I was his wife and he said, ‘Oh, I don’t need one of those!’

I do have a bit more time for me now and I’ve got back into singing, which I enjoyed before. It feels strange to be able to go out to the shops without thinking. I still organise my days around caring for Tom, which hasn’t changed.

At times I do feel lonely. You never get used to going home to an empty flat, after having a big family. At very sad moments I feel like a widow. My husband is there but he’s lost to me - he doesn’t laugh with me anymore.

Support from my family, especially my children and sisters has really kept me going. Organisations like Carers UK have also been so valuable – the online forum has allowed me to get in touch with other carers and share tips and support."


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