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Carer’s plea to Make Caring Visible

June 11, 2020

Action for M.E. is paying tribute to the men, women and children who play a vital role in caring for a loved one.

People like Clare Jewkes who juggles her full-time job in the NHS with looking after her husband Stuart who has M.E.

Clare became a carer 10 years ago when Stuart first became ill. Since then his symptoms have become more severe, leaving Clare to take on the lion’s share of running their home.

Clare, 36, said:

“No one expects that their loved one will become so ill they disappear from life. I've had to become a more independent person in some ways in order to care for myself, to keep me well.”

Clare is sharing her story for Carers Week 2020 (June 8-14), an annual campaign to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK.

“At first it was little things like making dinner a few extra times a week, doing a bit more cleaning,” said Clare. “Now it's more like prepare all meals, do all housework, manage food shopping, bills and medical appointments, make phone calls, support with medication, organise and help my husband to plan things. I also work full time for the NHS so managing a full-time job and full-time caring role is a challenge.”

Clare, of Swinton in Salford, said M.E. has completely changed their lives:

“My husband was very independent and went out many evenings during the week. We were active people, we went out for dinner, drinks, met friends. Just normal things! Life before M.E. seems a long time ago, nothing is ever spontaneous everything is planned. That's probably the biggest challenge, you can't just decide to go to the pub for tea, can't go away for a weekend. Petty things make me sad or annoyed like having done the washing up every day for five years or getting jealous when friends go on mega holidays. These aren't possible for us... Then you feel dreadful because you're upset about these things!"

The theme of this year’s Carers’ Week is Make Caring Visible – and never has caring been as important as during the Covid-19 pandemic. According to new figures released for Carers’ Week there are an estimated 4.5 million additional people who became unpaid carers in a matter of weeks due to the pandemic – this is on top of the 9.1 million unpaid carers who existed before the coronavirus outbreak.

Although caring wasn’t a new role to Clare, the outbreak has still had its challenges:

“It's been hard as I have been working from home and it's made a negative impact on my husband. His symptoms are worse and it's horrible to think that my presence has caused this to happen. We aren't on a shielding list and weren't able to get our usual online delivery for two months. I had to self-isolate for seven days, which was hard. When you're used to coping alone even asking friends for help is difficult. You feel like a failure.”

In some ways, lockdown has helped Clare provide more support:

“I've enjoyed being at home during the day, I can help my husband to prepare drinks and food. I can adjust my hours to support him without having to come home late.”

Clare misses her friends and family and the things she usually does to keep well, such as having time to do the things she loves such as going to the cinema and visiting National Trust sites. For the past few years Clare has been attending aerial arts classes at her local gym, finding it offers both physical and mental benefits.

Clare said:

“Mostly I train for enjoyment, the sense of community and because it's time I can spend just on me. An hour to achieve something just for myself, where I'm not a NHS worker or a carer or a wife or sister or daughter - just me, working hard and feeling strong. My husband is amazing and supports me to have time alone to keep me well. I'm very lucky.”

Clare believes more should be done to support carers and promote understanding of the vital role they play: “Caring is not only about looking after children or elderly parents. The lack of support for carers and their partners is unbelievable.”

Anyone caring for, or living with, someone with M.E. can contact Action for M.E.’s Crisis, Support and Advocacy Service by emailing or calling 0117 927 9551.