I have spent a lot of time in the past few years visiting people in care homes – usually frail, elderly people, often with dementia and, in the main, those who lack any (suitable) friends or family who visit them. I sometimes come away saddened, sometimes uplifted, occasionally entertained but nearly always pretty emotional one way or another, so I wanted to spend some time reflecting on that and why it was making me feel the way I do.
I intended to write a piece, along the lines of ‘ten things I have learned from going to care homes…’ – the way people do – but it seemed too trite, too reductive, for something so complex and individual. Many people have their own view on care homes – particularly if they have had a relative in one – but there are some popular perceptions about residential care that you hear a lot, which I wanted to think about, such as:
‘Don’t let me end up in a place like that; shoot me first’
It’s true, I’ve yet to meet anyone who actively looks forward to going into residential care and there are certainly plenty of people who are not happy to be in a care home, as well as plenty who are pretty happy with their lot. However, a lot of people say this type of thing when they are fit, well, young(ish). What I have seen is that there is a hidden group of extremely vulnerable people whose only alternative to residential care may be living alone and who are really very lonely, with three or four brief calls a day from an ever-changing roll call of carers; people who may crave more companionship; people who cannot get out by themselves but whose care package, cut back to its very barest bones by cash-strapped local authorities, will only fund someone to come and defrost a frozen meal in the microwave and change their incontinence pad. In fifteen minutes flat.
‘It’s just God’s waiting room’ –
Well, yes, pretty much, I suppose it is. For the very frail, the very old, the incapacitated, the vulnerable, the abused, who are in residential care, there are certainly a depressing number of homes where the residents are stationed in a hot living room, arranged in a traditional semi-circle around a large, very loud TV most of the day, every day.
I have also seen some homes with more innovative ideas: for example, chests of drawers placed randomly in corridors, stuffed with scarves, necklaces, dolls and handbags, with hooks on nearby walls, to enable dementia sufferers with a compulsion to rearrange, to carry things around, to nurture, to have some sort of focus to their walking. Some also have chickens or dogs, for residents to stroke and feed or café stations, where they can work to retain whatever skills they have remaining.
However, what I think sometimes people don’t see is that ‘God’s waiting room’ can just as easily be one’s own living room if you’re old, infirm and on your own. Take Lilian for example: she lives alone in the same house she has lived in for sixty years. She has advanced dementia and is doubly incontinent. Lilian does not speak much these days but has always been adamant that she wants to stay in her own home. Now, however, she cannot go upstairs at all and she barely moves from the couch, where she also sleeps, in her clothes, sitting up. Lilian refuses to wear nightclothes or even have a bed. The television has always been on when I have visited. The carers come three times a day, for twenty minutes in the morning; fifteen minutes at lunch and fifteen minutes at tea. Between these times and for the long stretch from 5pm to 9.30am, Lilian is on her own, sitting on the sofa, staring at the TV. The channel is never changed; her expression never varies, whether the screen is showing Jeremy Kyle punch ups, a game show or the news or if it goes off-air. At 9.30am, the carer comes, attempts to give her a wash standing up in her living room (logistically very difficult due to her frailty and often not possible due to her resistance), changes her pad (which is often soiled overnight) and makes her porridge in the microwave. At lunchtime, the carer comes back and leaves Lilian a cheese sandwich and a cup of tea. At teatime, a frozen meal is heated up for her. Once a week, a carer cleans her house and shops for her food, but Lilian never leaves the house. Lilian recently turned 90 and received only one card, from the agency that her carers are employed by.
There are more Lilians out there than it is comfortable to contemplate.
‘All care homes smell!’
Yes. In my experience they mostly do. Of urine and faeces. I’ve never been in one that doesn’t, at least some of the time. Some are worse than others. What’s important is how quickly the staff change the residents and how respectfully they do it.
‘All carers are angels/devils’
I have seen some fantastic carers, who are endlessly patient and wonderfully kind. This is sometimes despite the verbal and physical assaults sent their way by the people they care for: answering the same questions many times a shift, day after day; finding out and honouring the little things that matter to a person; getting to know a person properly and being alert to physical cues, respecting that someone has a right to exceptional physical care even when they cannot tell anybody what’s wrong.
I have seen some shocking carers, who are thoughtless, lazy and occasionally deliberately unkind: meeting frustrating behaviour with raised voices and rough hands; not changing someone’s incontinence pads when they have had a bowel movement; taking the path of least resistance; not noticing or caring that someone’s wheelchair is parked at an angle that means they can’t see the television; neglecting personal care interventions, like cutting nails or washing hair; and numerous tiny acts of thoughtlessness or neglect that rob someone who can no longer speak up for themselves of their dignity.
What I see most of the time, however, is overworked, underpaid, well-meaning people, the majority of whom are women working shifts for one reason or another, struggling in a massively under-funded industry, in a society that does not respect them or what they do, doing the work that is so necessary, so difficult and which most people could not do.
‘They just take all your money and I want to leave it to my kids’
They won’t take all of it, but they will take most of it. If you’re on benefits, you’re currently left with about £25 per week for yourself and the rest is your contribution to your care. If you have savings above a certain level, you pay a lot more and at a different rate than the council pays. It’s complicated. It’s expensive. If you try to leave it to your kids you may well be pursued for deliberate deprivation of capital. Funding elderly care is a ticking time bomb for our ageing population.
So what has visiting care homes taught me? (Apart from the fact that extreme old age can be immensely sobering and that life is unfair). In my opinion, it boils down to just one thing – ultimately, it is compassion and respect that matter.
I sincerely hope that I have the opportunity to live to a ripe old age, surrounded by people who love me and that I am as healthy as possible for as long as possible. But I have seen many people who are, unfortunately, alone at the end of their lives and do not have anyone they love or who loves them. Perhaps their partner went first. Or they never had a partner or children. Or they have fallen out with their children. A lot of people towards the end of their lives are difficult, intractable, rude, vulnerable, difficult to like let alone love. You can’t always give love to people, but to have a meaningful society, to make life worthwhile, you don’t just house and feed the vulnerable, you also give compassion, respect and dignity – to the cared-for and their carers. I think it really, really matters.