ROLE REVERSAL
Millions of women in the UK are caring for a parent, but at what emotional toll?
My 91-year-old mum is divesting. Sixty-two years after leaving Cyprus and a good job with the British Army for England, she’s preparing for her final journey. Over the past few years, she’s been discarding things she won’t need in the next life. She started by giving her material goods to charity; her clothes found a new place to rest, hanging limply from rails next to dusty shelves where her carefully chosen ornament collection languished. She cast aside writing, reading and knitting; her favourite TV programmes. Most recently, she shed decision-making. She has no desire – or perhaps it’s that she has no capacity – to choose between cereal or toast, between going somewhere or nowhere. She’s approaching non-existence, her mind leading the way. My mother is once again becoming a child. She is becoming my child.
My mum’s dementia is technically classified as mild, yet looking after her is physically and mentally exhausting. The sense of isolation I feel is intense; ironic, given millions of UK women are in a similar position. In 2019, the charity Carers UK estimated that there were between 9 million and 11.5 million unpaid carers in the UK, 58% of them women. It also found that
50% of British women will become carers by the age of 46. That was before Covid, which made unpaid carers of 4.5 million people, who provided an estimated £135bn worth of services during the first eight months of the pandemic alone. The increasingly ubiquitous nature of this responsibility is alarming when you consider that 71% of carers have poor mental or physical health. We’re seven times more likely to feel lonely compared with the general population; we’re also twice as anxious. One report, from the NIH Clinical Center in the US, linked the psychological effects of caring for a family member with health outcomes such as heart disease, impaired immune function and early death.
While I’m humbled by the medics, care home staff and others who have dedicated their careers to caring, I can’t help but wonder: what about us? Women, often in our middle decades – juggling increased responsibilities while our bodies undergo their most dramatic shift since puberty
– who tend to infirm loved ones in an unofficial capacity. I can’t not care for my mum but, in doing so, I mustn’t neglect myself. So, it’s with protecting my own health – and possibly yours – in mind that I’m seeking to understand why caring for a parent is so uniquely challenging. And asking: how can you care for yourself, while caring for a loved one?
VIRAL LOAD
When my mum’s health declined in her eighties, I immediately stepped up my caring duties. But then 2020 landed, and my mother’s dementia worsened just as Covid swung like a demolition ball, annihilating all forms of support. Her care team dwindled to one, then none, as the women who provided her with five hours’ assistance a day felt the risks of going between houses outweighed the benefits. Shortly after, my brother and I decided that he, too, should stay away, since his job brought him into contact with dozens of people each day. The burden of care came to rest on my shoulders alone at precisely the moment the virus denied me access to the friends, museums and
galleries that ordinarily offer me respite. My state of mind – fragile ever since my partner died of a brain haemorrhage in 2005, aged just 41 – dipped, sharply. There have been days when I’ve had to dig so deep to make the mile-long journey from my flat to her house that I’ve felt as if I’m hollowing myself out. Beyond the sheer exhaustion, the insularity and intensity of being bubbled with Mum has only heightened my awareness of my own – single, childless – predicament. Picturing a geriatric version of myself dealing with similarly bewildering circumstances, alone, terrifies me.
That I’m struggling to manage my own needs alongside my mum’s comes as no surprise to Richard Schulz, professor of psychology at the University of Pittsburgh. A specialist gerontologist with a particular interest in the impact of later-life diseases on patients and their families, he’s unequivocal in his assessment of the deleterious effects of caring. ‘Caregiving has all the features of a chronic stress experience – so much so, that researchers use it as a model for studying its health impacts,’ he explains. ‘It creates physical and psychological strain over extended periods of time, accompanied by high levels of unpredictability and uncontrollability, and frequently requires high levels of vigilance.’ All that, he adds, before you consider the secondary stress it creates in work, family and relationships.
In my position, there are times when the pressure of being responsible for every aspect of my mother’s welfare leaves me feeling like I’m teetering along an eroding cliff edge: at any moment, I might slip and carry her down with me. ‘It can be a hugely complex dynamic, one that brings to the surface many turbulent emotions – for the parent and the adult child,’ confirms Claudia Cooper, professor of psychiatry of older age at UCL. As the woman at the helm of the Alzheimer’s Society-funded New Interventions for Independence in Dementia (NIDUS) study, which aims to help relatives and professionals provide the best care for people with dementia at home, she’s seen first-hand how this dynamic can play out. ‘Both parties can feel immense sadness and loss – a sense of grief for the relationship they once had,’ she tells me. ‘Sometimes, new closeness can develop, but there can be difficult feelings, too. Managing intimate personal hygiene can be particularly challenging, and feelings of resentment and guilt can develop for people receiving and giving care. Ultimately, it can lead to a scenario in which interactions are fraught, devoid of joy and bound by dependency and duty.’
FRAYED TIES
Such resentments aren’t limited to the parent-child dynamic, either. Danielle Callaghan* was 35 when her father had a stroke, but with the support of her mother, sister and boyfriend – along with her father’s employer – she coped well. It was a different story when her mother needed care. By then, Danielle had been through a bitter divorce and her sister had moved abroad with her young family. ‘I was in my mid-forties, single, perimenopausal and anxious about my future,’ she recalls. ‘I wanted to relocate, to find new love and retrain, but my sister acknowledged none of that; she chose to believe that, because I was single and without children, it was okay for me to take on the caring responsibilities for our mother. I was so angry about being dumped by my husband and then dumped on by my sister; at times this made me resent the time I spent with my mother, causing feelings of guilt, too.’
The scenario Danielle, now 50, describes is one that Virginia Morris, author of How To Care For Aging Parents, came across repeatedly while researching her book, which she wrote after caring for
‘Interactions are bound by dependency and duty’
both of her parents at the end of their lives. ‘One sibling inevitably ends up doing more than the other. This can cause tension because people have no idea how tough it is until they experience the pain of watching the person you love deteriorate or the enormous energy it takes to keep that person clean, fed and safe.’ She tells me a common misconception is that caring for an elderly loved one is no more demanding than parenting a newborn. ‘But that’s an absurd comparison to make,’ she adds. ‘There are no joyful milestones – only the desperate sadness of watching the person you love become more infirm. It’s relentless and demands huge sacrifice.’
Such sacrifice can feel even greater if you’re simultaneously parenting your own children – a situation 3% of the population find themselves in; more than 27% of whom show symptoms of mental illness† (the figure is 22% among the general population). The pandemic has invariably increased the squeeze on this sandwich generation. Jo Cullen*, 52, has two teenage children and an octogenarian father who, until March 2020, had an active social life. ‘I used to phone him daily and pop in twice a week – and that was fine,’ she says. ‘But the relentless pandemic press coverage made him so anxious that he started calling me three or four times a day. My strong dad, who’d move mountains for me and my brothers, suddenly became a vulnerable, elderly man who needed me.’ With her commitments, Jo felt unable to do any more for her father; a realisation that made her feel like a failure. ‘I increased my visits, but that just meant standing on the doorstep shouting at him through the window.’
INSIDE JOB
You might feel that women like us, who find ourselves as unofficial carers for the people who raised us, are in an ill-fated position. But not only is it possible that you’ll find yourself caring in some capacity at some point, it’s highly likely. It’s a fact that makes establishing how you can care for a parent, without sacrificing your own wellbeing, urgent work. While no perfect blueprint exists, experts agree that self-care – whatever that looks like for you – needs to be ruthlessly prioritised. My own resources are best replenished by being out in nature, with vast skies above and deep oceans below – the type of experiences I was, pre-covid, routinely afforded via my work as a travel writer. It may seem counterintuitive to manage feelings of isolation with activities that encourage introspection, but mounting evidence links exposure to green or blue spaces with lower blood pressure, anxiety and stress levels, while also improving mood and immune system functioning. It doesn’t take long to reap the benefits, either: a 2019 University of Exeter study of 20,000 people found that spending just two hours per week in a park or by water greatly improved wellbeing. In the absence of long-haul trips, I’m snatching moments of healing in my daily routine. On the way to my mum’s is one of the UK’S oldest oak trees; I can lose myself in the intricate patterns of its 800-year-old trunk, comforted by the reminder of my infinitesimal place in the world.
While implementing various practical changes can help, adjusting expectations can make for profound change, too. For Jo, the brutality of the lockdowns compelled her to make more detailed plans for her father’s future. Danielle, too, found relief on the other side of the decision to become her mother’s carer.
She provided live-in care for her mother until she passed away in 2019, and while it was one of the toughest periods of her life, she has no regrets. ‘I’m glad I didn’t place her in residential care,’ she reflects. ‘In the last 18 months of her life, our time together was so gentle. I’m not romanticising it; it was utterly exhausting and extremely isolating. But I’m sure it was still the less stressful option.’
I ask Danielle if there’s anything she’d like people to know about what it means to be a carer. ‘People think I put my life on hold for those few years,’ she begins. ‘But they don’t understand that that was my life.’
This resonates, deeply. Time with my mum means time away from my work, my home, my friends, my life. Some days, I’m tempted to pick up my phone while I’m with her, to check in on my life. But while my mum needs a cook, cleaner and carer, what she craves is company. So I put my phone away and read to her. On other days, I put a scratchy 35-year-old cassette tape in my ancient ghetto blaster and we shuffle on the spot to the songs of her youth, all too aware that the melodies that accompanied her first dance may well accompany her last. Mostly, we talk about the young woman she once was. She tells me about the could-have-been, should-have-been lovers, who, like her dreams of going to Paris to study languages on a scholarship, were snatched from her by circumstance. I’ve heard her story a thousand times, but I don’t ever expect it to stop hurting my heart. When my mum’s life is done, I know I’ll look back on this time and think that I did my best. That just as there was nothing more she could have done for me when I was her child, there was nothing more I could have done now that the roles have reversed. It’s not the path either of us would have chosen, but she’ll reach its end with me by her side.
The Alzheimer’s Society-funded New Interventions for Independence in Dementia (NIDUS) study is recruiting volunteers. Find out how to take part by visiting ucl.ac.uk and searching for ‘NIDUS’.