Jono Maryono
It was a rainy evening in West London when the routine comfort of a Bollywood comedy was shattered by a phone call from the hospital. For months, the author and her mother had navigated a labyrinth of medical appointments and disheartening misdiagnoses. This call, however, carried a weight of finality. The doctor’s words confirmed what a growing unease had hinted at: the bone marrow results were back, and immediate hospital admission was required. The diagnosis, delivered in a stark white room that offered little solace, was myeloma, a rare form of blood cancer. This moment marked a seismic shift, transforming the author from a daughter into a primary caregiver, a role that would soon consume her life and redefine her sense of self.
The Onset of a New Reality
The diagnosis of myeloma at age 72 for the author’s mother, Pritpal, initiated an immediate treatment plan of weekly chemotherapy sessions for two months. The accompanying list of potential side effects – nausea, fatigue, weakness, and weight loss – painted a grim picture for a woman already frail. The author, Minreet Kaur, a freelance broadcast journalist, found herself thrust into a solo caregiving role. Her father, Rajinder, though present, was unable to provide substantial support due to his age and confusion, while an estranged older brother offered no assistance. The realization that she would be the sole pillar of support for the person who had always cared for her was profound. This was not merely a change in circumstances; it was a fundamental redefinition of her identity, transitioning from child to carer.
The initial days following the diagnosis were steeped in fear and grief. The author’s father, attempting to offer comfort, echoed his wife’s name, "Pritpal, don’t worry," and urged them to "keep the faith," before retreating into his spiritual routine. A bouquet of flowers from her mother’s colleagues, intended as a gesture of goodwill, inadvertently amplified Pritpal’s distress, leading her to believe her diagnosis was common knowledge. Her plea, "I don’t want to give up work," underscored the deep-seated desire to maintain normalcy and independence in the face of overwhelming adversity.
As chemotherapy commenced in September 2023, Pritpal’s physical decline became stark. Bedridden for most of the day, she struggled with eating and often experienced vomiting. Even simple acts like navigating stairs required the author’s physical support. Compounding these challenges was the cultural stigma surrounding cancer within their South Asian community. Pritpal was adamant that Minreet should not seek external help for household chores, emphasizing a reliance on smoothies and soup. This placed the entire burden of care squarely on Minreet’s shoulders.
The Erosion of Self and the Search for Connection
The transition from a full-time journalist to a full-time carer was swift and all-encompassing. Minreet’s days became a relentless cycle of ensuring her mother’s basic needs were met: meals, rest, hydration, and monitoring for fever. She woke before Pritpal to prepare breakfast, offered massages, and diligently researched foods and herbs that could aid her treatment. Visits to the local gurdwara for prayer and to bring blessed food (prashad) offered a brief respite and a spiritual anchor. Her sole personal time was confined to the evenings, after her parents retired around 8 pm. This stark lack of personal space and the constant demands of caregiving led to a profound sense of lost identity and a bleak outlook on the future.
In her isolation, Minreet turned to social media and a myeloma support group, seeking advice and a lifeline to the outside world. A comment on a post detailing the exhaustion and isolation of caregiving resonated deeply: "caregivers work around the clock looking after a loved one, yet are often looked down on and seen as incapable of doing anything else." This observation highlighted the invisibility of their tireless efforts. It was through these online forums that she reconnected with Bill Singh, a friend she had known for five years, who revealed his own years-long experience as a full-time carer for his parents. His simple message, "I know how you feel. It’s tough," offered a crucial moment of shared understanding.
Bill Singh: A Quarter-Century of Devotion
Bill Singh, a 64-year-old former manager at a freight company, represents a significant segment of the unpaid caregiving workforce in the UK. His caregiving journey began in his 40s, first with his mother for 15 years as her frailty increased with age. In 2007, he made the difficult decision to leave his career to provide full-time care for her. Following her passing in 2022, he immediately assumed the primary caregiving role for his 96-year-old father, who is living with Alzheimer’s and dementia.
A visit to Bill’s home revealed the intricate, day-to-day reality of his commitment. His entire schedule is dictated by his father’s waking hours, starting with assisting him with waking, breakfast, and showering to prevent falls. He manages meals, medication, household chores, shopping, and medical appointments. Encouraging his father to eat, despite a diminished appetite, is a constant effort. Physically demanding tasks, such as assisting his father in and out of the car, are further complicated by moments of refusal to move. Thursdays are dedicated to a senior citizens’ group, providing his father with social interaction and gentle exercise, a deliberate effort to prevent isolation.
As the only single sibling among five, the responsibility fell solely to Bill. While his siblings offer some support through meals and invitations, the bulk of the daily care remains his. Humor, he admits, is a crucial coping mechanism, allowing him to navigate the repetitive nature of conversations and the constant need for reminders. "I feel like a broken record," he confessed, a sentiment echoed by many in similar situations. The emotional toll is significant, marked by moments of shouting or annoyance followed by guilt. Nights are often disrupted by his father’s confusion, believing it is time to attend the temple and attempting to leave the house, requiring Bill to gently guide him back to bed. The relentless nature of Alzheimer’s, a "deadly, silent disease," as Bill describes it, creeps up insidiously. The social isolation is profound; years of not seeing friends and the inability to leave his father alone have narrowed his world. Even simple tasks, like replacing a broken kettle, remain undone due to a lack of time and mental capacity.
Bill receives a Carer’s Allowance of £83.30 per week, a sum he describes as an "insult," barely covering the rising costs of living and exceeding the cost of petrol for medical appointments. He highlights the critical, yet often unacknowledged, role of unpaid carers in supporting the National Health Service, stating, "Without carers like us, the NHS would collapse, but no one looks after us." Despite the immense challenges, Bill expresses no resentment. "I want to care for my dad; he cared for us. This is my duty," he affirms, finding fulfillment in his role, even as his father’s health deteriorates, necessitating constant vigilance and sleep deprivation.
Linda: Three Decades of Unwavering Care
Just a short distance away, 79-year-old Linda has dedicated nearly three decades to caring for her husband, John. A diagnosis of multiple sclerosis in 1998 marked the beginning of her journey as a full-time carer. John, who was a driving instructor, had to cease working approximately 28 years ago, prompting Linda to leave her career working with special needs children.
Her commitment transformed their home into a space adapted to John’s increasing needs. Initially, he could walk short distances with assistance, but by 2008, his mobility had significantly declined, requiring Linda to convert the living room into his bedroom. She managed all aspects of his personal care, including cooking, feeding, bathing, and toileting, without external help. Despite discovering potential entitlements, Linda never claimed Carer’s Allowance, finding the application process "overwhelming."
Linda’s own health has been affected by age and fatigue, compounded by her own MS diagnosis in 1994. However, she remains physically resilient. Her daughter, in her 40s, provides crucial support, accompanying her to physiotherapy and insisting on regular breaks to see grandchildren or friends. While John now resides in a nursing home under palliative care, funded by the NHS, and has been there for three years, Linda continues to visit daily, bringing homemade meals and sharing jokes. "He never gives up. And that gives me strength, too," she states. The recent possibility of John returning home has stirred considerable anxiety in Linda, who worries about her current health limitations and her ability to cope with the demands of full-time care once more.
The Unseen Workforce: Data and Statistics
The experiences of Minreet, Bill, and Linda are emblematic of the millions of unpaid carers in the UK. Approximately six million individuals provide unpaid care, a figure that includes family members and partners. However, only one million receive Carer’s Allowance, which is recognized as the lowest income-replacement benefit of its kind in the country. A staggering 1.5 million people in England and Wales dedicate more than 50 hours weekly to unpaid care, yet support remains insufficient. A survey by Carers Trust, the UK’s largest carers charity, revealed that only 55% of unpaid carers receive the necessary assistance, such as respite breaks, paid care workers, or emotional support.
The impact on carers’ health is significant, with half reporting adverse effects including stress, fatigue, and poor sleep. They are 1.4 times more likely to experience poorer health compared to non-carers. Financial hardship is a pervasive issue, with 28% of informal carers living in poverty, a stark contrast to the 20% of non-carers. Carers Trust emphasizes that many carers remain unidentified, preventing them from accessing vital support. The charity advocates for a robust social security system for intensive carers, specialized employment support, and crisis intervention. The demand for care continues to escalate, with an estimated two million older people in the UK having unmet needs for daily activities.
Ramzi Suleiman, policy and public affairs manager at Carers Trust, articulates the critical situation: "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. Local carer organisations face funding cuts, limiting support. Carer’s Allowance is outdated and inadequate."
Chloe’s Resilience and a Mother’s Unconditional Love
In contrast to the challenges faced by those caring for aging parents, the experience of Catherine Ann Reid, 62, highlights the lifelong commitment of caring for a child with complex needs. Catherine Ann’s daughter, Chloe, 23, lives with Cohen syndrome, a rare genetic condition characterized by severe learning disabilities, autism, a degenerative eye condition, chronic neutropenia, and significant motor skill challenges. Catherine Ann, a former sales director, adapted her career to freelance and fractional work to manage Chloe’s escalating needs. Chloe’s journey has been marked by multiple surgeries, including extensive orthopaedic procedures and spinal fusion, requiring her to relearn to walk three times.
"Nothing prepares you to be a carer," Catherine Ann reflects. "I’m doing today what I’ve done for Chloe every day of her life. It’s exhausting, but she’s my child." The emotional burden of "who will look after our children when we’re gone?" is a constant fear for SEND parents. Despite the exhaustion and lack of comprehensive support, Catherine Ann finds profound meaning in her role. "Chloe has taught me so much," she states. "Through her, I have become a better person, I am more resilient, I see people for who they are, my values are stronger. She has learned to walk three times. If she can do that… I can do anything." Her own business, a life admin platform, is a strategic move to ensure financial security for Chloe’s future care.
Satnam Kaur: Breaking the Silence in the Sikh Community
Minreet Kaur’s journey has also intersected with Satnam Kaur, 47, a fellow Sikh and single mother of three, who provides full-time care for her daughter, Gurpreet, 23. Gurpreet lives with a rare chromosome disorder that results in severe physical and learning disabilities and complex health conditions, necessitating one-to-one care since birth. Satnam describes caregiving as the "greatest responsibility and privilege of her life," but acknowledges its relentless and isolating nature. "Your world becomes very small. You lose friendships, social connections and even parts of yourself because everything revolves around the person you care for."
Within the Sikh community, where caregiving is often viewed as a duty and rarely discussed, Satnam and Minreet are working to foster greater openness and support. They are collaborating on a podcast to raise awareness about the challenges faced by carers, seeking to create a space for individuals to connect, seek advice, and advocate for better support. The need for practical, financial, and mental health support is paramount, they argue, to alleviate the silent suffering of countless carers who form the backbone of families and communities.
The Daily Grind and a Mother’s Unwavering Spirit
Minreet’s own days are a testament to the unyielding demands of caregiving. Mornings begin at 6 am with preparing breakfast and cleaning. The long days are spent largely at home, managing errands, cooking, cleaning, and accompanying her mother to appointments and monthly treatments. Even moments of respite, like enjoying a cup of chai, are fleeting, often interrupted by follow-up calls from the doctor. The exhaustion is pervasive, and the guilt of taking time for herself, even for a run or a brief social outing, is a constant companion. The prospect of growing old alone weighs heavily, as her social circle has diminished and opportunities for personal relationships have been curtailed.
Despite the immense physical and emotional toll, Minreet finds strength in her faith, the support of a few close friends, and her mother’s resilience. She is grateful for every moment with her mother, cherishing their time together. Her mother’s determination to walk the London Marathon, a goal she set after being diagnosed with blood cancer, serves as a powerful inspiration. Minreet is committed to supporting her mother across the finish line, a symbol of her mother’s fight not to give up on life.
The physical pain her mother endures is a constant reminder of the challenges ahead. The simple act of massaging her mother’s head and neck, a reversal of childhood roles, offers a moment of comfort and connection. In these intimate moments, the profound depth of love and mutual dependence becomes evident. "I wish I could do more for you," her mother confides, expressing her reliance on Minreet. It is in these exchanges that the true essence of caregiving is revealed: a profound act of love that sustains both the carer and the cared-for through the most arduous of journeys. The unseen labour of unpaid carers, while often overlooked and under-resourced, forms an indispensable pillar of the UK’s social fabric, propping up a system under immense strain.
