It’s Carers Week, and the theme for 2020 is ‘Making Caring Visible’. Carers should be celebrated for the incredibly vital work they do every day for friends and family members. This week we’ll be sharing the stories of a few of our carers, to shine the light on the amazing work carers are doing right now, and to let them know that we are here to offer support and guidance along with practical and emotional support.

Carers of adults with a Mental health issue

Julie* has given up work to become full time carer for her sister who is diagnosed with a mental health condition and needs 24/7 support.

Julie has recently received a grant from our Carers Health and Wellbeing Fund towards a laptop, which has enabled her to feel less isolated and to participate in online peer support. She’s also participated in several mental health partnerships online, meeting as ‘expert by experience’.

“I just wanted to say a quick thank you for hosting the carers zoom call today (yesterday), and for letting me join. It was nice to see a couple of the others and appreciate their struggles…. it’s never going to be easy and we all just have to muddle through the best we can until things get back to normal, whatever “normal” is anymore!”

*name changed

Parents of children with a disability or long-term illness

All too often we hear how carers neglect their own health and wellbeing as they spend most, if not all of their time and energy looking after someone. Elizabeth, a parent/carer, was referred to CSWS by a friend who recognised that Elizabeth needed support. Elizabeth is the main carer for her daughter, Ami, who is 32 years old and has severe learning difficulties and challenging behaviour. Elizabeth explains how taking care of her daughter 27/7 is very stressful.

“Not everyone understands what we as carers go through. Ami is a lovely and kind girl, but sometimes she can get frustrated and take it out on me. But when I registered with CSWS last August, it changed my way of thinking. I felt that I am loved and not alone, and that there are people ready to support me and who appreciate my work as an unpaid carer, which is not easy and full of challenges. Staying at home all the time is not a good thing, as you think too much about everything. When your mind is unsettled, you are not able to think positively and look after yourself.”

Elizabeth called into the Carer Response Line and had a chat with a Wellbeing Support Worker about her caring role and what support services she could access.

As a result she applied for a grant from our The Carer Health and Wellbeing Fund and says she has used it to have her hair and nails done. “I feel more confident in going out and meeting people because I am looking after myself,” she says.

Elizabeth also attended one of our Carer Learning and Wellbeing Programme workshops on understanding more about wills and power of attorney and says: “It was helpful and gave me some things to consider for Ami’s future.”

Having the choice and control to decide when, why and how to access support as a carer is important, but sometimes just having someone there to listen, without the need for a solution, is equally important. “Being part of CSWS has given me self-esteem and made me feel valued. It has helped me fight loneliness by encouraging me to attend various programmes, social events and learning sessions within my local community. It’s good to have someone who will just listen.”

*Name changed

Those who are a Young Adult Carer

Young adult carer Sam* is convinced that without CSWS he could have been just another youth suicide statistic. CSWS was there to support him when Sam hit rock bottom at the age of 18 after 10 years of caring for his mum.

One of our support workers accompanied him to sessions with the mental health charity Mind. That same support worker, together with another from our SHINE team for young adults carers aged 18-25 provided vital one-to-one meetings to help Sam see his way through the most difficult time of his life, building his confidence until he was ready to attend regular support groups. These one-to-one support sessions continue to the present day.

Like many young carers Sam did not see himself as such. Adopted as a baby by his mum, the two coped well, until Sam’s mum was diagnosed with breast cancer.

“I didn’t realise it at the time but I had been caring since I was eight – mum was cured but over the years has had many other complications, conditions and operations,” he explains.

What started as doing the odd errand has grown with Sam, now 22, doing everything from shopping to house work, to picking up medications and ensuring his mother is safe.

His mum needs dialysis three times a week and Sam says toxins can lead to her having nightmares so he needs to keep eye on her, which in turn affects his sleep.

“With all the things I’m trying to do my life has been put on the back burner,” he says. “I haven’t had a normal childhood, the things that others take for granted like going out with friends or going to friends’ houses – spending birthdays on my own or not celebrating them.”

Despite his own health issues Sam struggled on until he was 18, telling himself he was doing what any good son, daughter or friend would do.

But on his first day at a new college his mother collapsed and was rushed to hospital. As a result Sam came into contact with social services and an occupational therapist came to visit his home to prepare for his mum to return.

“She started asking what I did for mum and I was explaining that I go out shopping, run errands getting her medications for her, make sure she got to places safely etc and she said; ‘Do you know that makes you a carer?’ I didn’t realise. I thought I was being a good boy and this is what every other son, daughter or friend would do for another person,” he explains.

Now with CSWS support Sam says he has more hope in the future.  “It’s definitely helped knowing that someone else is going through the exact same thing and they can empathise with you,” he says. “You build a bond with these people and you understand each other because of what you are going through.”

“When you’re a carer everything is impacted – it’s like a stone in a still pond – the ripples affect everything from family relationships to friends to neighbours and the truth is there are a lot of young people even younger than me out there who are carers and who think they are being good boys or girls – caring can drain you physically or mentally or both.”

“CSWS has made such a difference to my life – I was going through depression and having suicidal thoughts due to the stress of everything. It was very bleak at that time – I saw no other options and didn’t see my life would ever improve. CSWS has made a big change to my life. It has been supportive in many different ways – not just supporting me mentally but by helping with information about jobs, link to other services and helping me to build self-belief to allow me to take control of my own life. I am continuing to deal with my depression with the support from support workers in the SHINE team and the future looks more hopeful than I thought it could.”

*name changed

If you feel you are in need of some support, no matter how big or small, around caring for someone, please do get in touch with Carers Support West Sussex today. We are here for you.

Contact us on 0300 028 8888 or email info@carerssupport.org.uk