My mother Sylvia, aged 82, was widowed last year after my father’s agonisingly slow death from Parkinson’s. She was living in a large and lovely house 70 miles from two of her children and an ocean away from the third.
Dad’s more obvious struggles camouflaged my mother’s dementia and by the time he died, they had two live-in carers, one each, through a private agency at an eye-watering £4,000 a week.
After he died, she remained in their home with the help of a warm and efficient carer, but things were falling apart, both in her body and in the house. The step to the bathroom was perilous, the boiler needed replacing, she found it impossible to get out to the garden even with help.
Her mobility was decreasing at such a rate that it was likely that soon she’d need a second carer in the morning and evening, which would be both expensive and disruptive, as well as large-scale adaptations to the house such as a downstairs wet room.
Mum had been saying for over three years that once widowed, she’d like to move to a care home in London to be near to us. So, we set about touring suitable places – from the convent crammed with statues of the Virgin Mary and reeking of incense to the plush chain of homes with the décor of an airport first-class lounge. In the end, we opted for a small, friendly place with two cats.
Throughout this process, my brothers and I would take turns to fret that we were doing it for the wrong reasons. Were we terrible people? Could one of us upend our lives to move nearer or into her house? Could she move in with one of us? Could she stay in her house with two private carers on rotation?
Even having subcontracted out the day-to-day work to carers (including with what is always known euphemistically as “personal care”, the washing and the wiping), we were spending days at a time sorting out finances, fixing kitchen lights, on hold to Sky TV only to be told to “get mum to pop onto her online account” despite her being unable to use a phone.
We would try to reassure each other, while inevitably scratching the itch of our own guilt.
My mother’s friends, an astonishingly youthful group of tango-dancing, parkrunning octogenarians, were for the most part supportive. Mum maintained that she was looking forward to the move, but I worried that she didn’t know how much she was giving up.
She had looked after my grandmother at the end of her life and she had said at the time that she was determined that she would never be a burden.
Dementia has destroyed so much of her cognition, but this memory is burnt on to the hard drive of her mind. She did want to be nearer to us and her anxiety was amplified by living in a large house, but we feared her decision was more motivated by trying to help us and to spare us the occasional resentment that she felt towards her own mother.
As the moving date neared, a school friend of mine rang up to say that she and her mother had learned of the plan after visiting Mum for the first time in years. “My mother’s very upset about it,” said my friend, as if this was a key concern. She then outlined a series of “have you thought of” solutions in order to keep her at home. “Do you know that room downstairs?” she asked. Yes, I felt like screaming, I know that room downstairs, it’s where my father died.
The friend went on to explain how her father-in-law had been able to stay at home after developing dementia, oblivious to the fact that her mother-in-law was healthy and did the bulk of the caring and that the time between his diagnosis and death had been less than two years.
Then the kicker. She described how her husband had gone up once a month to provide respite for the weekend. “He’s such a good son,” she said, “we should all be so lucky to have a child like him.”
It’s as if she’d said aloud what everyone else must be thinking. That we were Bad Children. In a hierarchy of elderly care, with living with them and doing all the caring yourself at the top, we were doing the worst: we were “putting her into a home”.
I was reminded of a friend of mine, Anna, whose mother went to a care home after her dementia became advanced – she was sleeping in her clothes, incontinent, doors left open and ovens on. Anna was in her thirties, returning to the office full-time after maternity leave, living in a two-bedroom flat on the third floor at the time. But when she talked about it with a colleague, he said: “I would never put my parent in a home,” unable to keep the horror from his voice.
Even that phrase, “putting her into a home”, feels laden with implicit criticism. “It’s so emotive, implying that we’re doing something to somebody and taking away their control and choice,” says Sarah Richardson of Continuing To Be Me, which offers occupational therapy, needs assessment and interventions for people living with dementia and their families.
Ex-MP Phillip Lee echoed these judgements in 2019, when he said “we are outsourcing the care of our parents… is it because we have become a bit selfish?” Other politicians have suggested that we solve the social care crisis by copying the “Asian model” where family, invariably daughters or daughters-in-law, take it all on.
In part, this stigma dates from different times, when there was more intergenerational living and life expectancy was shorter. Medical innovations thankfully mean that many more of us will survive cancers and heart attacks in our sixties and seventies, but in turn will be more likely to develop dementia or survive a stroke in our eighties and nineties. There is ignorance as to the reality of looking after someone with these conditions – it’s not a question of a spot of hoovering or a cup of tea, but a relentless, thankless 24-hours a day grind.
Care homes until the middle of the 20th century were often poorly adapted workhouses, so many older people still associate them with that shame. The varying standards of care homes has not helped their reputation. Staff are poorly paid and there is a recruitment crisis. Regular news reports of elderly abuse by staff are often accompanied by harrowing footage taken by secret cameras installed by concerned families. Covid further damaged their image.
We were lucky that the proceeds of selling my mother’s house allows us the luxury of choice – my mother’s care home costs nearly double the national average. But many, especially those whose care is paid for by the state, will have no such choices.
In addition, many do not want to see all their lifetime savings get swallowed up in the fees – an average of around £64,000 a year with the state only stepping in once savings get to below £23,250.
In reality, the number of people living in specialist retirement housing is relatively low – while 2.2 million people over the age of 65 in the UK have a care need (for example needing help with eating or dressing), most live at home, with the help of carers, paid and unpaid. Only about 350,000 are in care homes. The majority of these are, like my mother, suffering from dementia.
For those remaining in their own homes, life is not always idyllic. For an elderly spouse, the responsibilities of caring can damage their physical and mental health – while those living alone rely on brief visits.
“With families dispersed across the world, the reality is a paid carer coming in three times a day, not family,” says Richardson. “They’re not seeing anybody and they’re isolated and a care home can open up new ways of coping and maintaining function.”
My mother had a wide circle of loyal friends back in her old life but we worried that they would drift away as their own health worries took their toll, or as she became increasingly less able to converse.
Still the stigma and guilt of moving into a care home proves powerful. “I’ve a client with advanced dementia looked after by her husband,” says Richardson. “He’s at his wits’ end. But he won’t hear of moving her, worrying that people will think he can’t cope. I worry that a crisis will happen and she will have to move for the sake of his mental health.”
Sheri Jacobson, psychologist and founder of Harley Therapy, says “it’s an instinctive response to want to look after our parents and then by not being able to do it, the natural emotion of guilt surfaces.”
She suggests that we allow ourselves to feel these emotions – rather than getting into a destructive cycle of feeling guilt, trying to squash it, then feeling resentful.
Hannah Karim, senior care expert at Lottie, which matches clients with the right care, suggests that we change the language around these choices – using more positive phrases such as “moving into a care home” or “transitioning into a care home”.
Both she and Sarah Richardson stress the most important thing we can all do is to bring these conversations out of the shadows. “Bringing up the topic of ageing into our daily conversations will… normalise growing older and the common decisions many of us will face when looking to support our loved ones.”
It’s early days for my mother, and I still wrestle with the decision. We’re doing all that we can to help her settle – from WhatsApp groups to coordinate a daily visit, to an abundant supply of her favourite magazines. Freed from the endless task of fixing her house, I have sat and chatted with her more over the past month than in the previous year.
Last week, a woman with a beautiful voice came in to the care home to lead a singalong including songs from my mother’s favourite musical, The Sound of Music. “And I loved it,” my mother beamed.
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