Unpaid and unappreciated: The true cost of caregiving

Debbie McEwan, 59, from Stockport, has been married for 32 years. She’s a mother to two sons, a full-time manager of cabin crew, a previous part-time nurse in A&E and loves to sing in her spare time.

But that’s just what people see from the outside. What people don’t know is that Debbie is one of around 9% of people in the UK according to Carers UK, that also has another full-time job alongside everything else. One that most people don’t fully understand.

“Maeve, please, it’s me! It’s Deb! You know me!” Deb sobbed as she stared across the room at her mother-in-law.

But it was hopeless, Maeve stared at her with utter hatred. Her Alzheimer’s had robbed her of the ability to recognise those she loved.

Debbie had gone to her in-laws to complete her usual care routine, before her mother-in-law had flown at her, screaming in her face over something menial. Despite the daily visits, Maeve still didn’t know who she was.

She spat vile words at her daughter-in-law, hands flailing as she screamed abuse in the face of what she knew to be a stranger in her home. Debbie fell apart. It was all just too much.

Debbie is a full-time unpaid carer for her in-laws, Maeve, who has advanced Alzheimer’s and Tom, who suffers with early vascular dementia, Parkinson’s and leg ulcers.

“Maeve terrifies me,” she says. “She’s really scary because she can just turn and be really angry because of her condition.”

“We go in four times a day to care for them, make lunches, wash them and clean up. I get no days off at all, but because of my conscience I have to do that otherwise I’ll feel guilt.”

This is the reality for millions of people around the UK who care for family and friends, many with conditions which are very difficult to care for.

The life of an unpaid carer is that but a glamorous one. Social care has become one of the most troubling issues in the country with most people not realising the true struggles unpaid carers face on a daily basis.

Many people, like Debbie, care for family merely because they have no other choice. They cannot bear to see a loved one struggle and so, they step up to be a carer out of love.

“I have to do it because I couldn’t live with myself if I didn’t,” she says.

Caring can have a huge mental impact, with a report from St George’s, University of London showing that unpaid carers providing over 20 hours of care are 96% more likely to report poor mental health than their peers.

Another woman who understands these hardships is 68-year-old, retired business owner, Barbara Medcalfe. She has been a carer three times in her life, looking after her mother-in-law, her husband and her mother all on separate occasions up until their deaths.

“I didn’t think there was any other choice. I can’t walk away and leave someone,” she says.

A report from Carers UK found that 73% of carers with bad mental health, who felt as though they were at breaking point, continued to care. This shows that many, like Barbara, felt there was no other option.

Barbara became a carer when she was newly married, taking care of her mother-in-law, Cora, who had dementia, pneumonia and suffered mini-strokes.

“I wasn’t sure how to live with it on a day-to-day basis,” Barbara says, “I didn’t really know what to expect because I didn’t know how the illness would progress. It’s not that I loved her any less, I still wanted to care for her but I felt quite sad most of the time. It does take over your life being a carer.

“I had to be six steps ahead all the time, you couldn’t wait for an incident to happen. We also had very little free time, you’d have to drop everything because there’s no-one else to do that.”

As well as taking up huge amounts of time, being a carer also has a huge physical impact.

For Debbie, she’s experienced pains in her shoulder, which make it harder to care for Tom’s leg ulcers. She also has high blood pressure and needs to take medication for that, which has resulted in her having an abscess on her teeth due to side effects. Not only that, but the stress has also resulted in her finding a benign breast lump.

All symptoms that she says: “I know are a direct effect.”

“You don’t eat very well and the lack of sleep is a huge problem,” Barbara says, finding the physical impact of caring to be difficult, “That was one of the hardest things.”

But sometimes it’s worse than that.

“I have said to my husband on more than one occasion that I’ll be dead before one of them the way it’s going,” Debbie says, “and I’m sure that if you speak to other people that they’ll say similar, because it’s the stress.

“If we began to have to stay the night then we’d be starting something that would result in one of us dying before them, you know, it’s that bad.”

And experts agree. We spoke to Richard Meade, Director of Carers Scotland.

“Caring can have a profound effect on every aspect of life and wellbeing, from mental and physical health. Many carers are struggling,” he says.

For Barbara, she and her husband Terry had moved to Spain before he became ill, leaving her alone in a foreign country with no help whatsoever to care for her husband.

“I was totally on my own and I began to feel very isolated, even though I had lots of friends, I couldn’t have anyone round to the house and I couldn’t go out with friends,” she says. “Socially it was very difficult, you couldn’t organise anything at weekends. I didn’t resent it very much but obviously your patience is tried many, many times.”

Debbie has also found the impact on her social life tremendously difficult

“I have lovely friends, a great job and a lovely life but all of it is impacted because I have to cancel things,” she says. “There’s a huge social impact, and those are the things I need for my mental health to be in a good state but I have to cancel them. I feel resentful that I don’t get to see my friends as much and I don’t get to do the things I want to do.”

Unpaid carers contribute the equivalent of £162 billion to our economy each year as stated in research by Petrillo and Bennett in 2023, and yet, are left feeling helpless. So, how can we tackle this issue?

“Unless someone has actually been in that situation and looked after someone on a day-to-day basis, over a period of time and actually done it on their own, people have no idea what it’s like. Absolutely no idea what it’s like. They need to get some systems put in place to help carers, to come and talk to families,” says Barbara.

“Social care should be provided, resources are so limited and there’s not enough money,” says Debbie. “When you need care, where do you go? Who do you go to? We don’t know. Even Alzheimer’s society haven’t helped us, they haven’t done anything, which has been a let down and a disappointment. There’s absolutely nothing. Government money might be going into a different pot but this pot needs to be filled from somewhere,”

The role of unpaid carers is often misunderstood, with many overlooking what they do on a daily basis, or simply not understanding the situations that many people are in.

They’re not given help due to a lack of resources, so they’re forced to care because no-one else will.

But this isn’t right. With our current ageing population, millions of people around the country need full-time care and this is only increasing. We need to start appreciating the unsung heroes who sacrifice their personal lives to care for those in need, often getting absolutely nothing in return.

Caregivers shouldn’t have to fear dying first.