You Won't Believe What 7 Out of 10 UK Carers Face Daily—The Shocking Truth Revealed!

West London, UK – It was a rainy evening, and my mother and I were at home watching a Bollywood comedy when I received a call from the hospital. After months of medical appointments and misdiagnoses, part of me wanted to ignore it. Instead, I went upstairs to answer. The doctor was calling to say my mother’s bone marrow results were back, and we had to go into the hospital the next day.

The call left me anxious, but when I told my mother about the appointment, I tried to be reassuring. “Don’t worry, Mum, it’ll be clear, nothing serious,” I said. The next morning, the hospital waiting area was quiet. No patients. Just the hum of the building. We sat side by side, facing the wall.

When my mother’s name was called, we entered a small room with stark white walls, two chairs, and barely any space to breathe. The doctor calmly explained that the results showed myeloma, a rare blood cancer. Treatment had to start immediately.

I sat there frozen as my mother began asking questions. My mother, then 72, would start with weekly chemotherapy sessions for two months. The doctor handed me a sheet listing the side effects – nausea, fatigue, weakness, and weight loss. Chemotherapy would drain my mother, who was already slight, and she would need to rest.

Sitting in that small room, I realized that life had shifted. My ageing father wouldn’t be able to help much, and my older brother is estranged from us. I would be doing this solo, a single woman with no partner to turn to, caring for the person who had always cared for me. I would no longer be my mother’s child but her carer.

Life Transformed

We left the hospital overwhelmed. When we returned to our terraced house in West London, I sat my father, Rajinder, down in our small living room and told him about the diagnosis. He looked confused and turned to his wife, mumbling, “Pritpal, don’t worry,” and “keep the faith,” before heading upstairs to pray as part of his daily routine.

Later that day, flowers arrived. My mother, suffering from back and chest pain and fatigue, had been on sick leave from her retail assistant job, and her colleagues had sent her a bouquet to cheer her up. She broke down, thinking they knew about her diagnosis. “I don’t want to give up work,” she told me, tears in her eyes.

The days that followed were filled with fear and grief, and I felt sick with worry, imagining life without my mum. Our lives changed instantly after my mother’s first round of chemotherapy in September 2023. My mum became so weak that she would stay in bed all day. She found it hard to eat, and some days vomited. If she used the stairs, she would have to lean on me.

Like many of her generation in our local South Asian community, she saw cancer as something to be ashamed of or that could spread. Because of this taboo, she was adamant that I shouldn’t ask others for help with cooking or other chores. We’d make do with smoothies and soup, she told me. Everything fell on me.

I already lived with my parents, but went from having a full-time job as a broadcast journalist to freelancing and becoming a full-time carer. Very quickly, I didn’t have time for anything other than making sure my mother ate, rested, drank enough water, and didn’t have a temperature. I woke before her to make breakfast, gave her massages, and researched which foods and herbs could help during her treatment. When I could, I’d go to the gurdwara to pray for my mother’s recovery and bring her prashad (blessed food), hoping to make her feel better, even if she didn’t feel like eating.

The only real time I had to myself was when my parents went to bed around 8 p.m. I very quickly felt I’d lost a sense of self, and I couldn’t see things improving anytime soon. I started asking for caring advice on social media and a myeloma support group – it was the only way I could feel connected to the outside world and meet other carers.

About a month after my mother’s treatment started, I wrote a post about the tiredness and isolation that comes with caring. One person commented that caregivers work around the clock looking after a loved one, yet are often looked down on and seen as incapable of doing anything else. It made me think of how invisible we are. My friend Bill Singh also saw the post. I’d known him for five years before I learned he had been caring for his parents full-time for years.

A Shared Burden

On a cold, windy afternoon, my parents and I visited Bill’s home, about a 20-minute drive away. My mother has depression linked to her illness, and getting out of the house helps her feel better. Bill is 64 and has been a carer since his 40s. He first cared for his mother for 15 years as she became increasingly frail with age. As her needs grew, Bill made the difficult decision to give up his job in 2007 as a manager at a freight company so he could be with her full-time. She passed away in 2022. Shortly after, Bill became the main carer for his father, who is now 96 and living with Alzheimer’s and dementia.

In their cozy living room, with a red carpet and family photos lining the walls, Bill brought out some tea and biscuits. He was yawning. “I’m knackered,” he said. I asked him how long he’s been caring for his father. “Too long,” he replied with a cheeky smile. Warm and often cracking jokes, humor helps him cope.

Bill plans his entire day around his father’s waking hours. He gets him up around 8 a.m., makes breakfast, and keeps an eye on him while he showers so he doesn’t slip. He prepares meals, manages medication, cleans, shops, and takes his father to medical appointments. His father doesn’t eat much, so Bill gently encourages him to do so throughout the day. His father is nearly six feet tall and strongly built, and it can be physically exhausting to help him in and out of the car or deal with moments when he refuses to move.

On Thursdays, they attend a senior citizens’ get-together where his dad does gentle seated exercises and has lunch with others. “I don’t want him stuck at home watching TV all day,” Bill said. “It’s important he sees people.”

Bill receives very little formal support. He receives Carer’s Allowance, a weekly payment of £83.30 ($111) from the government, and he and his father survive on this payment, pension money, and savings from when he worked. “Carer’s Allowance is an insult,” he said, adding that it goes quickly with rising bills. “It costs me more in petrol to get to [medical] appointments than I get from Carer’s Allowance,” he said. “Without carers like us, the NHS [National Health Service] would collapse, but no one looks after us.”

Despite the loneliness, exhaustion, and lack of government support, Bill says he does not resent caring for his father. “I want to care for my dad; he cared for us. This is my duty,” he said. “I wouldn’t change caring for my dad for the world. It’s hard being a sole carer, but I get on with it as so many others do.”

Over the past two years, the appointments for my mother’s blood tests and treatment have seemed never-ending. After six months of chemotherapy, my mother entered remission, but she still needs monthly infusions. Although she is tired and suffers from bone and neck pain, she is walking more. I manage all the grocery shopping, household chores, and other errands for my parents. My mother’s brothers help when they can, collecting her from appointments.

My mum encourages me to run, go on dates, and meet friends, but caring leaves me too drained to think about my own needs, and I feel guilty if I take time out for myself. Sometimes, I manage to write articles for newspapers or magazines, or to go for a run to clear my head. But I worry about growing old alone. Caring has diminished my circle of friends and my time to meet a partner, someone with whom to build a family of my own.

In the UK, there are around six million unpaid carers, many of them family members and partners, but only one million receive Carer’s Allowance, the lowest income-replacement benefit of its kind in the country. More than 1.5 million people in England and Wales provide over 50 hours of unpaid care weekly, yet support is limited. Only 55 percent of carers get the help they need, such as breaks, paid care workers, or emotional support, according to a survey by the UK’s largest carers charity, Carers Trust.

“Carers are propping up our failing health and social care system and feel ignored. Many have cut back or left paid work, driving them into poverty,” said Ramzi Suleiman, policy and public affairs manager at Carers Trust. “Local carer organizations face funding cuts, limiting support. Carer’s Allowance is outdated and inadequate.”

The need for caring is immense. In an ageing UK, about two million people have unmet care needs for daily activities such as getting out of bed, bathing, eating, and going to the toilet.

Caring means giving so much of yourself all the time, and I often wish more people would just ask how I’m doing. For now, what keeps me going is my faith, talking to the few close friends who check in, going for runs, and going on walks with my mum. My mother also gives me strength. I am grateful for every moment I have with her because I don’t know how long we have together. I try to prepare food she likes and buy flowers to bring a bit of joy to each day, even though I often feel hopeless and exhausted.

She wants to walk the London Marathon this year. The last time she tried, in 2023, the year she was diagnosed with blood cancer, she had to stop after 17 of the 26.2 miles. But she always promised to return, and I plan to support her across the finish line. Though she feels weak, she wants to do this to help more women like her feel motivated not to give up on life.

As I massage her head and neck, something she used to do for me when I was little, I realize what matters most is the love I give her – it’s what helps her continue her fight to get better.