'This is what informal caring looks & feels like'
A PHOTO ESSAY
By Vicky Gayle
Unpaid carers — those who provide physical or emotional support for a friend or relative who couldn’t cope without that help — were described as “selfless individuals who put their own needs last” in a recent House of Lords debate.
The following week, Carers UK published its latest State of Caring report, which detailed troubling circumstances for unpaid carers, who are facing difficulties at home, work and in their personal lives. They’re spending more time looking after others and less time working, and struggling with the extra costs of care as a result. Meanwhile, the cost of living continues to rise.
Where carers need the most help is looking after their health and wellbeing — with 68% of the 10,000-plus survey respondents admitting so. Unpaid carers reported feeling lonely, anxious and depressed. Caring has, in some instances, negatively impacted people’s relationships and their ability to socialise or have hobbies, also damaging their self-confidence and sense of identity.
Integrative counsellors, Aga Detlaf and Lisa Morgan, founded Counselling 4 Carers CIC to meet the needs of informal carers, who often have limited access to professional mental health support.
“It’s incredibly important for carers to be able to speak up about their struggles. Too often, their own needs get pushed aside because their focus is on someone else’s wellbeing. But acknowledging and expressing what you’re feeling isn’t selfish — it’s actually an act of strength and sustainability,” Aga said.
“When the person being cared for is physically or mentally fragile, carers may suppress their own emotions — not because they don’t feel them — but because they’re trying to protect someone else. This can leave carers feeling isolated, unseen and emotionally exhausted.”
There are an estimated 5.8 million informal carers in the UK supporting someone due to illness, disability, frailty or addiction, according to the 2021 Census. Of the 5 million informal carers in England and Wales, 1.6 million are aged between 25-49, with 35-49-year-olds being the largest group of the two. Women are more likely to provide unpaid care.
This month MPs will debate the inequalities faced by unpaid carers while they wait for carer’s allowance reform, including compensation for debt caused by overpayments, and to see if caring will eventually become a protected characteristic under the Equality Act.
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​Dinkum Diaries asked five informal carers to describe their experiences, including writer Vicky Gayle, who wants carers to remember that being honest isn’t a betrayal of those they’re caring for.
Vicky's Story
While you sleep, or rather ‘recover’, from multiple seizures, I feel the weight of responsibility. I try to think logically to reach decisions that are all mine. Should I take you to hospital? This isn’t your typical pattern. Google searches lead me to ‘cluster seizures’ and…what?! ‘Status epilepticus’? Surely not, you said you felt fine when you last woke up. Is this an emergency or your body having a bad day?
I watch the time, contemplating if I could make the video shoot I was due at. No, it doesn’t feel right to leave. My intuition guides me well because you have another fit. F*&K.
Thank God I was here when you had them. And thank God you were already laying down. Gratitude leaves my lips in voiced thank you’s.
When you wake up again I consult you on your care – not as a show of respect for your agency – but to relieve some of my burden; to feel less lonely and guilty if it turns out I was wrong not to go to hospital.
I sleep in your bed for the following three nights.
“Budge over for our sleepover,” I joke on night one.
“I’m going to charge you rent!” you clap back.
At 1am, your shaking body wakes me up. Not again. Google: ‘What to do if someone has a seizure in their sleep?’
I return to watching you, choosing the radio for company until I…eventually…drift…off.
Vicky Gayle, 35
(baby photo): Mum and daughter, when Vicky’s mum was 34 years old
Melissa's Story
I support my father who was diagnosed with myeloma, a form of blood cancer, earlier this year after a bad fall. He also suffered from spinal cord compression that left him bedbound for several months. It all happened so suddenly.
Through his recovery, I’ve helped with cooking, cleaning and preparing medication. It’s been a difficult time, but slowly I’ve seen the man I recognise come back into my life as he becomes
more independent. This experience has taught me tomorrow isn’t promised so every day with a loved one is something to be cherished.
I’ve also been supporting my uncle, who is disabled with cerebral palsy, since 18 years old. Although he’s under the care of the local council, I assist with refining his care plans, menu and activities. Supporting someone who’s unable to eat, walk or communicate is immensely challenging.
I’ve also struggled with accepting the level of care provided to this particular group of vulnerable people in our society. There isn’t a day I don’t worry about if the people looking after him are doing their jobs properly and unfortunately, I’ve found this to be the case on several occasions.
My uncle has a wonderful personality. Despite his challenges, he’s an engaging, happy and cheeky person. Spending time with him is what encourages me to keep going and fighting on his behalf for better care.
Melissa Campbell, 28 (Real Voice, Alias name)
An empty box of chocolates first stored Melissa’s dad’s medication when the pharmacy wouldn’t give him a pill organiser
Michelle's Story
Being a carer is something I never saw coming. Not in the way I’m having to care for my darling six-year-old daughter.
I never expected to be still changing nappies. I wasn’t prepared to not hear her beautiful voice at the age most children start to speak. I never expected to have a child who would need the support of a wheelchair to keep her safe from all life’s dangers due to her lack of understanding. I never expected to see my other children become young carers for their sister.
I can’t and I won’t sugarcoat it: life as a carer is hard! For myself and my husband, it’s like having a newborn all over again. Not just because of her personal care but the constant high alert we stay on to ensure her safety.
We’re so thankful for the amazing school she attends where she gets all the care and support she needs.
The day our daughter went out of sight in the safety of our home for all of two minutes will never be forgotten. She found the stored paint and the rest is history. Her brother’s bedroom floor was covered in white paint and I was horrified. My husband was at work and wasn’t ready for my frantic video call. He was in shock at the sight.
It’s safe to say, the paint is now stored in a different part of the house.
Michelle Clarke, 44
The aftermath of paint-gate in the Clarke house in September 2023
Kyshia's Story
Over the past few months l've found myself by my grandmother's side a lot more, helping with small, everyday tasks that were once routine for her.
Her memory loss means she often asks the same question twice or misplaces items in odd places, and I can see the frustration on her face when she realises she’s forgotten something. It’s awkward for me when she mentions something from earlier in the day but won’t always recall doing it. This sometimes makes her frustrated, quiet and unsure.
Most of the time I remind her of what we talked about; help label cupboards or draft a list of things to do. These things used to come naturally to her, but I’ve realised adjusting to the changes in her life helps us both communicate better, no matter the circumstances — even though it weighs on me at times.
I sometimes hope this is just short-term memory loss, but I know they’re signs of something more serious like dementia. I always find myself wanting to protect her independence while feeling the need to keep her safe as she did for me growing up. My grandmother is my best friend, and I’ll always feel protective of her as the moments I have with her now I cherish the most.
Kyshia Newell, 37
Kyshia with her grandmother, Drucilla, now age 90
Neil's Story
I’ve recently been able to have a few days on my own after seven years of caring for my dad, age 65, and brother, who’s 42. My dad has various health issues, including vascular dementia, and my brother has learning difficulties.
I’d been nominated for an award for my community work with the charity Forward Carers, so I spent two days in London. I felt lost, not knowing where to start with being on my own. I struggled at first, but as soon as I got on that train, I knew it was my time — and they’d been telling me I needed a break.
On the train journey I kept thinking I needed to make appointments or get prepared for another appointment, while also saying to myself to stop thinking and enjoy my time.
As a carer, it’s important to grab time for yourself when you can because we never know when the next outing will be. It’s important to remind yourself to sometimes put you first.
For me that’s spending time with friends one night a month.
Neil Joesbury, 46
Big Ben serves as a reminder for Neil to cherish this time away in London
For Support Where You Are, Visit:
Carers UK - https://www.carersuk.org/
Carers Trust - https://carers.org/ Counselling 4
Carers CIC - https://www.counselling4carerscic.co.uk/
The Black, African and Asian Therapy Network (BAATN) - https://www.baatn.org.uk/
Black Minds Matter UK - https://www.blackmindsmatteruk.com/