Recent data from Carers UK suggested that the pressures of caring for an elderly or infirm relative are causing 1.5 million people in the UK to leave their jobs. The report suggested that 15% of the adult population is now ‘working and caring’ and these responsibilities often go unnoticed in the workplace. The ‘sandwich generation’ (those who are also caring for children) inevitably feel a double burden, and many of them are experiencing poor mental health from the pressure. The research prompted me to revisit the difficult period working full-time when my Mum fell ill, to add my voice to those who are campaigning for a complete overhaul of the social care system and greater support for unpaid carers.
The 9th March will be the second anniversary of my Mother’s death. At 79, Mum was an independent woman, who lived alone with very little support. I helped with the groceries every week and popped in regularly after work; however, Mum had no cognitive impairment and, although quite frail, led an active life, enjoying hobbies and a bustling social life. She was a petite, well-spoken woman, with silvery-white hair, hazel-brown eyes and a warm smile. She was a proud member of Exeter Cathedral’s Company of Tapisers and contributed for many years to stitching and needlework, making and repairing the Cathedral garments and kneelers. On the evening of the 16th November 2015, Mum fell over in her apartment and sustained an injury to her brain. Or, should I say, we think that she fell over that evening, but we can’t be sure because it wasn’t until the morning of the 17th that the building manager discovered her, dazed and confused, with an enormous black eye. We don’t know if she’d made it to bed that night, but we do know that she’d attempted to cook a meal for herself – we found a bag of defrosted frozen peas in the cutlery drawer and an uncooked Bird’s Eye Chicken Pie (complete with tin-foil casing) in the microwave. There was a waste-paper bin full of blood-stained tissues, indicating that she’d tried to attend to her wound; however, she’d not pressed her alarm bracelet, so no-one knew that she needed help.
I was in London, about to attend the Being Human Festival to give a talk about masculinity and mental health, when I received a call to say that Mum needed to be admitted to hospital – so I abandoned my talk and caught the first available train back to Exeter. My sons accompanied Mum to the hospital, and I found them waiting there when I arrived. Mum thought she was in Penzance, the place she had previously called home for over thirty years, but the most recent ten years of her life in Exeter had disappeared almost entirely from her memory. She seemed to think that we’d fallen over together, while walking along a pavement. She couldn’t remember the month, or the year – and tried eating her hospital supper with her fork upside down. The next day, she fared very badly on the Addenbrookes Cognitive Examination, which made her distressed because she was desperately confused and didn’t understand why she was being asked to remember and repeat the address: Harry Barnes, 73 Orchard Close, Kingsbridge, Devon (an address that is now etched firmly on my memory, which might give me a head start if one day I too lose my mind).
Mum had sustained an injury to the eye socket and the frontal lobe. A subarachnoid hemorrhage had caused memory loss and anxiety - impairment that we were told might be temporary, but sadly never improved. She was discharged after 10 days, barely able to dress herself or use the toilet. I tried to keep Mum in her own home for several months, with carers visiting three times a day. These were the most exhausting months of my life. Overnight, I became entirely responsible for another adult individual. The carers were excellent, but Mum was confused and upset in her apartment, wanting me to be there with her all of the time. I soon began to collate a long list of names and important numbers for clinics, carers, doctors, physios and podiatrists. During my lunch break, I’d check in with my to-do lists, which included hospital appointments, memory clinics, food shopping, pharmacy collection, bills and banking. Mum didn’t understand who the carers were; got confused about when they were coming; and couldn’t remember whether or not she had eaten her meals. Reminder notes were futile because she couldn’t seem to process information; similarly, she was unable to focus on the whiteboard I bought to help her identify daily routines. The number of items in the laundry basket spiraled as she didn’t know whether she’d worn something or not. In between meetings at work, I’d return dozens of missed calls and answerphone messages – most of the calls were asking me where I was and when I would be there next with her.
Mayhem and madness
After two hospital admissions and several months trying to cope at home with a care-plan, I was exhausted. I was a full-time academic, and the pressure was immense. As an only child, I remember praying that my 82-year-old Father in Cornwall, continued to recover well from his recent aortic valve replacement, since my one pair of hands were stretched to the limit. The year that followed was the hardest of my life. Making the difficult decision to move Mum to a care home, packing up and selling her apartment – and facing the combined incompetence of the social care system, the DWP and the Office of the Public Guardian, pushed me close to the edge. Mum never settled in the care home, roundly blaming me for being unable to look after her full-time. She was housed in the dementia wing; however, Mum didn’t have dementia and we were all misinformed about her brain injury, the impact of which, I now know, was very different from dementia. She was angry and aggressive yet retained remarkable intellect. This made her behaviour hard to understand. Some days I could hear her shouting when I arrived in the car park. As I entered the building, the staff and residents would only have to glance at me, and I could gauge the degree to which she had disturbed the equilibrium of the home that day. I once arrived to find she’d locked herself in the toilet with an ironing board and had to be released by a maintenance man with a screwdriver. On another occasion, I found her shouting loudly in the foyer, that there had ‘been a murder in the night’. After only one week, a wireless heat pad I’d bought to help warm her cold feet caught fire while charging in her room. Inevitably it was confiscated, and she earned the unenviable reputation of being ‘the one who nearly burned the place down’. As a coping mechanism, I began to keep a ‘diary of dark humour’, which I shared with close friends, who seemed to connect with it and encouraged me to write more. Meanwhile, my Mother perfected the art of upsetting other residents. She was moved from table to table in the dining room, eventually settling with three male residents who were virtually catatonic and less likely to react to her provocation. Joan, a lady with well-advanced dementia, became particularly adversarial and used to sit in the communal areas poking my Mother with her walking stick, calling her ‘the pig’.
Items went missing from Mum’s room. Her handbag was discovered across the corridor under another resident’s bed and I often arrived to find framed photographs of somebody else’s grandchildren on her shelf. Betty, a small woman with dementia, would pace up and down the corridor outside Mum’s room and come in if the door was open. She’d be dressed in her underpants, which were always on top of her trousers. For some reason, she’d tuck several pairs of socks into her waist band and they would sway from side to side as she marched up and down the hall. Mum, who was previously an immaculately presented woman, soon stopped having her hair washed and refused showers. She found no pleasure in music, radio, television or audiobooks. Her mood was often irascible, and we could not even placate her with activities or massage. Some days she would hurl hurtful abuse at me, other days she would sink into deep depression. She started eating less and in the late summer of 2016, she took to her bed and refused to get up. By January 2017, Mum weighed five stone. During every visit, I would find her in the foetal position, on her right side, with her right arm under her pillow and her left arm curled up under her chin. Every time I saw her, she asked me if she could die. I didn’t want her to die, but I didn’t want her to live in purgatory either. Neither did I know how to help her. Refusal of food and water was, I think, Mum’s last attempt to control her destiny. I’d arrive some days and the carers would greet me excitedly, telling me: ‘Good news! Your Mum’s had a Complan today’. Outwardly, I would try to look pleased and smile, but inside I would wonder whether this had simply prolonged her suffering by a few more days. I don’t believe she told the carers she wanted to die, but I heard the term ‘she’s turned her face to the wall’ spoken softly in the corridor on a few occasions. I now know that this is a metaphor for someone who has withdrawn from life and is preparing to die – but no one explicitly had a conversation with me about this. In Britain, we are very bad talking about death, even when it is not far away. I visited the care home most days after work. Increasingly, I would find her asleep and, not wanting to wake her, I’d write her a message on her chalkboard and creep out quietly. As I passed her window to the car, I’d feel a visceral sense of grief, looking at the familiar trinkets on the windowsill and the silhouette of her tiny body in bed through the crack in the curtains. Each night, waiting at the level crossing on the way home, I’d phone my husband, usually in tears of desperation or despair.
On the morning of the 9th March I received a call at work to say that Mum had deteriorated, and I was advised to come immediately. A colleague kindly took over my afternoon seminars and I left campus hastily. As I arrived at the care home, the sun was shining, and the daffodils had opened in the garden. It was a beautiful spring day, and I was struck by how incongruous that moment felt: the light and renewal of spring, contrasted uneasily with darkness and resolution – with what was inevitably to be the end of my Mother’s life behind the closed doors of the building. I sat with her all morning and my sons arrived at lunch time. She held their hands and we all huddled around the bed. Mum was now four and a half stone. We felt tearful, but oddly calm and collected. Outside the door, I could hear the musical activity session begin, and residents were singing rounds of ‘I’m Forever Blowing Bubbles’, and ‘Run, Rabbit Run’. We took a break for some air, and when we returned, the lovely carer had rearranged Mum’s pillows and tightly cocooned her in sheets and blankets. She looked comfortable and at peace for the first time in 14 months. She was asking for me and I held her hand. Her breathing became soft, shallow and irregular. After about twenty minutes, it stopped altogether, and her small frame lay motionless. Mum’s passing was strangely beautiful, and in complete contrast to the pain and anguish of the preceding months. As we left Mum’s room, one of the residents, clearly energised by the singing activity, was singing ‘Zip-a-dee-doo-dah’ in the corridor. It was truly a bizarre moment, as my Mother’s body lay in the bedroom behind us.
One month after Mum’s death, I was driving to work, listening to Audible and the fascinating book, by the neurosurgeon Henry Marsh, Admissions: A Life in Brain Surgery. Marsh was recalling a discussion with a junior doctor about a patient with a frontal lobe brain injury. He said, ‘[The frontal lobes are] where all our social and moral behaviour is organized. You get a whole variety of altered social behaviours if the frontal lobes are damaged, almost unbearably for the worse . . . sudden outbursts of irrational behaviour are among the commonest. People who are previously kind and considerate become coarse and selfish, even though their intellect can be perfectly well preserved – the person who has frontal lobe damage, rarely has any insight into it . . . it’s terrible for the families – they are the real victims’. It was at that very moment that I finally understood what had happened to my Mother – why her behaviour was so out of character, yet her intellect seemed completely intact – and why the approach used for dementia patients was so ineffective. I pulled over into a layby and sat quietly for a moment. I felt sad and frustrated that no one had had time to talk to me at the hospital and no one had explained that Mum’s injury might affect her impulse control and inhibition as well as her memory. I don’t think I handled her outbursts particularly well. I found them painful and alarming, and often left the care home feeling abused. I was shocked that gaining clarity about my Mother’s decline was completely serendipitous, and that I only gained a full understanding about what had happened to her because I had chosen to listen to the memoirs of a retired brain surgeon. Mostly, individual carers, nurses and doctors were dedicated, kind and empathetic; however, they were all fire-fighting, constrained within a health and social care system at breaking point. At the end of it all, I did feel that, beyond the immediate exigencies of pain relief and the preservation of dignity, the broader psychological needs of elderly people are neglected. So too are the practical and emotional needs of relatives and carers. Looking back at that period, I coped only because of the support of my family and friends. I’m not really sure how I managed to keep working. I had a few days off here and there for hospital discharges and during times of heightened chaos, but never seriously considered giving up my job. However, the cumulative effect of the stress was beginning to make me ill. It wasn’t until my Father, at 84, experienced a health crisis last June and was hospitalized with sepsis, 120 miles away, for 11 weeks, that I realised my own sanity was in jeopardy. However, that is a story for another day!
I am grateful to have parents who have lived to a good age, and realise that many are not so fortunate. I also acknowledge that many (if not most) of my generation are living through similar difficulties – mine was not an isolated experience, and for some, the intractable pain and distress is even worse. At least my Mother’s decline was relatively short. Some of her fellow residents had been leading a poor quality of life in the care home for many years. However, my Mother’s decline brought me first hand experience of the current care crisis. I was lucky to have the resources and skills to provide advocacy for my Mother, but I often wondered how those less fortunate than me were able to navigate the complicated support systems, which seem to be designed to obstruct you at every turn. I also realised that neither of my parents had wanted to talk about end of life care, leaving me in a financially and emotionally perilous situation when they were suddenly incapacitated. As a society, we have only begun to engage with these important issues, and in England, we still await the delayed Government Green Paper on Social Care. As Age UK demonstrate, the system is underfunded - services are something of a postcode lottery, and 1.2 million people aged 65 plus don’t receive the care support they need with essential living activities. In the end, it falls to family members to care with little or no support. I would urge everyone to watch this short video from Age UK and to lobby their local MP for real change.