Unpaid Carers Hub Team raise awareness during Carers Week

Who is a Carer?

A carer is someone who provides unpaid care and support to a family member or friend who has a disability, illness, mental health condition, addiction, or who needs extra help as they grow older. It isn’t someone who volunteers or is employed to provide support.

Juggling employment and care has been a constant struggle for many working carers. With most carers taking on their responsibilities at the peak of their career, aged 45-60, the UK economy depends on employers retaining their staff. A lack of understanding about the pressures of caring means many are struggling to balance their competing responsibilities with the ‘no choice but to care’ report finding 48% of carers have to give up or reduce work. Nearly 2.5million people in employment are providing unpaid care in England and Wales. 

Lizzie's Story

Lizzie shares her experience of caring for her father who had Lewy Body Dementia.

"Roald Dahl’s Danny the Champion of the World, which Dad used to read to me, says “What I’ve been trying so hard to tell you all is simply that my father…was the most marvellous and exciting father...” 

"Danny, mine too and despite the best efforts of Lewy Body Dementia (LBD), it’ll never take away his greatness. Caring for him was one of the greatest privileges of my life and one of the toughest. 

"I moved back in with Mum to help take care of Dad and confess I had no idea about what caring for someone involved.  It’s A LOT.  

"Meal times were now a task; we prepared one ‘softer meal’ for Dad and one for us. Mum, the real hero of the story, gave him his breakfast, his medication, prepared lunch and dinner, all of which took time. 

"Body clocks were out of sync - I called it ‘Daddy time’. When we winding down for the evening Daddy was awake. When we didn’t want to get up at 3am, Daddy could be calling out. He was often asleep when grandchildren arrived, sorry to have missed them. 

"Dad suffered from hallucinations which can be part of LBD - we hid from bullies, pretended to ring the fire brigade and fought in WW2. I tried dismissing them, being there with him, and reassuring him. “Hello Daddy’”, “hello little one” he replied before scrunching up the bedsheet and stopping a chimney falling down. The mind is a powerful thing. 

"Also no one tells you about the amount of stuff. Strange equipment became a logistical challenge. Prescriptions had to be ordered, medicines selected, pads counted, bags dated, fluid charts completed - it was a constant rhythm. 

"I’d work remotely next door to Dad and would get up sometimes to hold his hand whilst he was having a vision, returning to my zoom call often trying not to cry. 

"There were lighter moments of course: 

• Dad humming The Dambusters whilst being hoisted across the room  
• “Bed-bound catch” was fun. We’d both start laughing, my face being the perfect target at the foot of the bed 
• “Dad make sure you’re moving your fingers” – waggling them with vigour, he turned Raynauds into Beethoven. 

"As mentioned, I didn’t know much about caring but I want to say to any fellow carer, you’re doing a fantastic job - please remember that.

"I’m sorry to say we lost Dad a few months ago so please allow me to end with a tribute to him. Daddy, I hated seeing what this horrible illness stole from you but you were so dignified, kind, gentle and selfless until the very end, it is a lesson. I feel lucky that I could spend precious time with you, holding your hand like you have always held mine. Just because we can’t see you now, doesn’t mean that you’re not with us."

With thanks to Lizzie and The Lewy Body Society for sharing this story.

Mark’s Story

Mark has cared for Michael, his adult son, for his whole life. Here he shares how the impact of the pandemic and the cost of living crisis has made his unpaid caring role even more challenging.

“I’m a carer in Caerphilly and I care for my 43 year old son Michael, who has complex needs and needs round the clock care. I have cared for him all his life, and know how important it is that carers are recognised and know how to get support.

“Being recognised as a carer would mean being acknowledged as someone who needs specific support and information in order to make the right decisions for my son.

"I care for my son with my wife, both alongside paid employment. This means that support services are critical in allowing us to be able to care. However, we just do not have the support that we need or that used to be in place. Before the pandemic my son could attend day services for thirty hours a week, now it is only six. This is a huge reduction and puts more obligation on myself and on other unpaid carers in my area.

"In addition, my son cannot regulate his own temperature and is incontinent. This means that we have to keep the house at a consistent temperature, no matter the weather. We also have to use the washing machine two or three times a day, as well as the tumble drier in the winter. As a result, our heating bills have risen substantially over the last year. This a substantial extra cost that we have no way of cutting down. We need to keep my son healthy and safe, but it is essential that we receive proper support to do so.

"It is vital that carers like me know where to turn for support, and that an adequate level of services are provided for those of need of them. This includes proper signposting, and making sure that carers know what they are eligible to claim and how to access it.

"Caring can be stressful and all-encompassing, so it is essential that councils and local organisations recognise the challenges."

With thanks to Mark and Carers UK for sharing this story.

Zoe’s Story

Zoe met Mike on Channel 4’s First Dates in early 2020, where they hit it off but decided to be friends. After continuing to talk daily throughout lockdown, they realised they had feelings for each other. At the same time, Mike was diagnosed with MND. Their relationship blossomed after lockdown lifted, and in August 2022 they got married.  

Zoe self-identified as a carer early on in their relationship. She said: “I did a lot of research in the early stages of our relationship, as Mike was diagnosed with MND just before we became a couple. I remember reading some MND Association information which said that, while carers may not identify themselves as such, it’s a term that the government recognises and it laid out some of the things that carers do. I read that and thought ‘that’s me’. 

“As a carer, I’ve been able to access support from the MND Association, such as money towards driving lessons so that I could pass my test and take over the driving from Mike. I still work full-time so I don’t access Carer’s Allowance or any other benefits. Since identifying myself as a carer at work I’ve found out that a few colleagues are also carers, so we now have a bit of emotional support and visibility between us, and I’m now able to work from home most of the time.  

“When I wake up, I get Mike out of bed and wash and dress him. I give him his medication, flush his feeding tube and then we have breakfast before I start work. While I’m working, I get anything for Mike that he needs as he can’t use his arms to reach things, I scratch his nose if he has an itch. If he needs the toilet, I will move him to the toilet or commode. On my lunchbreak I prepare his lunch and give that to him, along with more medication. Then I go back to work, making up any time I’ve lost through helping Mike. After work, I’ll make us dinner, get Mike changed again and do any creams or medication, clean his teeth and get him into bed. Overnight, I am on call to help Mike with whatever he needs, like repositioning. That is just a regular day with no appointments, phone calls or journeys outside.  

“It’s so important that the government recognises carers. Without unpaid carers there’d be an even bigger strain on services and a lot more care workers would be needed. Carers do what they do because they love the person they care for, but it is really hard. They don’t want millions of pounds or a pat on the back, but they do want people to understand what caring is like and put accommodations in place for them to get by. Something has to give at some point, and Carer’s Allowance is not enough to live on.”

With thanks to Zoe and the Motor Neurone Disease Association for sharing this story.