…in which I find time to think about my own future and take the long view on what I might want when the time comes…
It’s the last care call of the day. This is Zara arriving. She’s from Slovakia. She’s been a carer for four years, she’s married to a Brit and has two children. She’s also a qualified chemist, though she can’t practice in the UK and so works as a carer. She’s always jolly, even when I suspect she’s not feeling jolly inside. Which makes her rather marvellous…
‘There, we’ll be quicker than a quick thing,
‘We’ve got a kylie here.’
It only takes a few minutes to get mum ready for bed and Zara and I are pretty good at the routine now. After the change of pad, the application of creams or powder and a hairbrush for mum, we sit in the kitchen and Zara fills in ‘the book’ whilst I get supper ready. There are pages for medications, bowel movements, times in and out, and there’s a space for Zara to write what we did, how mum was and so on. Keeping records is an important part of the job for all the carers. It protects mum and the carers, and me I suppose. Because there’s always a written record to refer to if any problems arise. As a safeguard and an insurance policy it may be partial, but it’s all we have. I don’t keep a record myself. I don’t think I could bear to do it. Living the day is enough. But there’s time to chat, which is always nice.
It’s been a long day and I’m exhausted, but with Zara gone and mum sleeping peacefully, the house is quiet and there’s time to think. I’m conscious of the days and weeks and months to come. Like the horizon, although I can only see so far, I know there’s an ocean of the same beyond. My role as carer to my mother is not a sprint, but a marathon and I fully recognize I’ve only just got into my stride. Mum’s doing well and I get compliments on her wellbeing, but I know I will finally be judged on her longevity and my ability to go the course .
I am, after all, totally responsible for another life. A single parent to my own single parent. And that, as the young folk have it, is awesome. The first few nights—the first couple of weeks actually—I’d lay awake with my door open and hers, and I’d listen and hear nothing and wonder…is that good or bad? Is she alive or dead? Am I really cut out for this? What if I get it wrong? What if all the warnings turn out to be right? What if I screw up?
I’m a beginner in care, without a clue. Which is why there’s a formal—and informal—monitoring system that serves to protect vulnerable people like my mother. The possibility of neglect, mistreatment, even cruelty, at the hands of carers who may purport to love their charge and have only their best interests at heart, is always a factor to be considered and mitigated against, just as it would be in any institution, only more so because I’m alone here. And yet the shrinking resources the state is willing to commit to social care, against a backdrop of growing demand demonstrates institutional negligence of the highest order.
Still, it is my potential negligence that we’re talking about here and the safeguards that I accept are entirely necessary. From district nurses and carers to the Office of the Public Guardian and the Court of Protection, the quality of my care is the concern of many individuals and organisations, protecting my Mum against incompetence and ignorance as much as malintent.
Though I have to say this is a slightly uncomfortable realization. At first, I wasn’t really conscious of being watched. But as the days and weeks have gone by, I’ve become more aware that being seen to do is a vital element of the job, almost as important as actually doing the right thing. Whatever that may be. Because opinion varies on exactly what the right thing is. District nurses have an interest in how medications are administered for instance. And although the Parkinson’s nurse, Rose, has sanctioned crushing the sixteen pills Mum has to swallow each day and mixing them with yoghurt or ice cream, so reducing coughing and choking that otherwise would be an issue, the district nurses have suggested I might want to get that in writing. The carers are not permitted to administer medications in ‘disguised form’ as they call it under any circumstances, even with a letter. Once you stand back from the situation, you can see why. And that’s just one example. The carers often refer to me as ‘the principal carer’, as if all decisions are mine and mine alone. Only in practice,
I’m an amateur working with professional management. Most unpaid carers are relatives like me; sons and daughters, parents or spouses. None are trained for the job before taking it on. All have lives of their own, including work outside the home, and other key family members or partners who call on their time. Many, those of a certain age especially, have their own health conditions to cope with.
Can you stand some numbers? Tell you what, let’s have some music, just as a digestif…
In the UK, one in ten adults are carers, either part time or full time. That’s currently around seven million people, a figure expected to rise to ten million by 2030.
Seventy per cent of those report that their mental health has suffered through caring. Around forty per cent receive some kind of treatment for depression or anxiety and many end up taking prescription drugs, antidepressants for example, in order to cope. More than half have physical health issues as a result of caring and of those fifty per cent just had to carry on regardless.
Okay, we can only take so many numbers, I know that, but bear with me a little longer because caring is not just about caring. It is also, as Zara said, about money.
Carers who care for more than 35 hours a week receive carers allowance, currently £64.60 a week. That’s equivalent to £1.86 an hour, the lowest benefit of it’s kind.
So you might be interested to learn the estimated economic value of their contribution in the UK is calculated at £132bn a year. Or £19336 from each individual carer. Don’t ask me how the authorities get to this figure, but we can assume one measure might be the cost of providing similar levels of care through professionals and institutions. Those hundreds of billions are equivalent to all the healthcare services put together, social care and the National Health Service. The figure is also two and a half times the UK’s annual defence budget and one and a half times the nationwide education budget, just by way of comparison.
The statistics provide urgent reasons for the state to offer support in every possible way, from physical assistance to emotional backing, education and training, and even financial incentives. But this side of things, as you might imagine, is somewhat less of a priority than it might be, mainly because it costs money. When people are caring for relatives and partners because their duty of care is based on ‘love’, successive governments have felt it prudent to avoid any disruption to that vocation by introducing incentives into the equation.
Just to maintain current social care, with no additional support for unpaid carers, no new initiatives, the NHS under enormous pressure and an ageing population only increasing demand, we face a mammoth funding gap of 18 billion pounds by 2030.
Which is a lot. And enough. There’s only so much of the politics of care one can take, so let’s turn away from the big picture and get back to the little picture. Me.
Because now it’s just mother and I, I’ve started thinking again about my own needs again . In earnest.
What is it I want? For myself? Because now I have first hand experience to go on, both of care homes and of care at home, I know something of the current reality. I’m now fifty-seven years old. If I’m lucky, I’ve got another decade or more before I will need care. But it may be sooner…
And yet my life expectancy now stands at around eighty four or eighty five years of age, twenty years beyond retirement and thirty years from now, by which time a third of the population will be in the same boat, calling on the same resources.
We ignore the last quarter of our lives, pretend it doesn’t exist, pretend it won’t happen to us. But it will. We know it will. We know everything we’ve achieved or accumulated, learned and loved, valued and pursued, will not prevent us growing old and eventually dying.
But what we don’t have to do is to begin dying before we’ve stopped living, and loving life in all its precious joys and frequent hardships. We don’t have to be invisible, pitiable, quiet, a burden, irrelevant, unfulfilled or useless.
How? Simple really. We just change the way we think about old age. Instead of seeing it as a curse, we find ways to value the late stages of our lives, just as we value childhood, youth and middle age. We find ways to ‘ be’ that make sense at an individual level, to each and every person.
Easy to say, hard to do. But not so much. Zara’s right of course, money is key, but money is not everything, not even the biggest part of what we have to do to make our later lives worth living.
What we need above all, is a clear vision based on nothing more than an understanding of what it is to be human. Of what constitutes human happiness, fulfilment and what Aristotle dubbed ‘flourishing’, or eudaimonia.
Human flourishing is not a measure of your skills and assets, your wealth or health, family or friends, but rather a measure of how well you can enjoy these essential pillars of happiness.
And our job in thinking about later life is to find ways to augment our ability to flourish.
What does that mean in concrete terms? What does that mean for me?
It means I want to be IN life, living life, for as long as I can. It means I want to feel cared for, yes, but not at the expense of losing all agency. It means I want my family around me, but not solely responsible for my care. It means I want contact with friends and the chance to make new friends, but not at the cost of giving up my own home and going into an institution. It means I want to feel safe, but not so safe that I can’t take a risk and win or lose the bet with myself and indeed learn from the experience. It means in fact, that I want to keep learning every minute of the day and every week and month to come . I want to be free from pain, but not free from feeling. And it means I want to give back, to be useful to others, to feel part of something bigger than myself.
Do you see the common thread here? Do you see why this kind of vision is not pie in the sky, not an illusion at all, but something very real and very tangible and above all, totally achievable.
Because the vision is all about compassion and co-operation, working together in other words. Bringing family and the state into partnership. Bringing neighbours and local councils together to guard and take care of the vulnerable. Bringing health services and friends together to prevent falls and flu and a hundred other minor problems that go undetected till they happen, that clog our hospitals and shorten lives.
And how do we make these magical partnerships work? Simple as this really. By recognising we will be the beneficiaries. By doing this for our own sakes. Because nothing will change unless we make it change. And we can only make things happen by recognising the appalling waste of life that is the division between social care, health care and unpaid care and that is the current system. A system that allows people, our own parents and relatives, and one day us too, to fall through the cracks, to experience the misery and despair of loneliness and neglect.
It need not be so. We can do better for ourselves and for those who come after us. We should do better. Thanks to mum, I can that see clearly now…
So what do you say we make a first stab right now. Dare to dream a future that could easily be a reality, if we want it. Let’s project forward to my later years, always assuming we make the changes we need to make and I get the chance to live as I wish…
It turns out, I don’t have to make the choice between care at home and care in an institution. Which is nice. You see, I downsized some years ago, tempted by the chance to hand on some of my small resources to my children, not as a legacy, but in order to share the costs of what they still call ‘the granny flat’, much to my chagrin. The house was designed to accommodate more than one generation, with a separate flat, or a pod in the garden, that could be for a dad like me, for guests and young people who want their own space. Tax breaks and far-sighted architects and builders led the way. I did a fair amount of babysitting too, back in the day…though I have to confess, I tended to spend the coldest months of the year at the village, purpose-built, by the sea, nurses and carers always on hand, with old friends who go there too, most years. That was after our big trip, eighteen months on the road in the winebego, subsidised, just Beatrice and me. A last look at the sights of Europe.
And now that the children’s children are older, and the granny flat has become a teenage den of iniquity, I have my own place in what used to be a dying town centre with boarded-up shops, but has been transformed, like the other towns and villages which wanted to bring back a sense of community. The government saw the logic of using existing infrastructure and adapting…real streets, real people. People from all round the world, they encourage cafes and restaurants, artisans, so now the world comes to us.
The hop-on, hop-off buses come when you call, driverless but with an old-fashioned conductor to make sure of easy access. Because the primary schools are here too, we old folk like to sit at an outside table in the many cafes and watch the comings and goings as the mums and dads arrive to pick up their young ones. I work three days a week, in the school and at the radio station where I have my own slot, interviewing and playing the music I like, much of which is no longer current I have to admit…
And when I have my bad days, which I do, knees aching or just wanting some alone time, I stay indoors, I write, sometimes I just sit and think and listen to the sounds of the street below my balcony. I’ve given up the allotment, but I still go down to see what the others are up to, beg a cauliflower or some carrots.
There’s fancy technology, the robot cleaning machines still un-nerve me, but there are also people…a district nurse who comes by for example. He’s the brother of the newsagent and there’s new folk from Slovenia I think, who’ve taken over one of the restaurants and serve Slovenian food, which is new. They all seem to know each other, and because I’m gregarious, they all seem to know me. Certainly, if anything happened to me, I would be missed pretty quick. I spend a lot of time just sitting in the square, especially on market days or when the buskers are playing something I like.
Of course, we lose friends, but the hospital is right here too, so we can visit to the end, and when the end comes, we can go to the service. There are rows and fallings out and accidents and the occasional scandal, but there are also love affairs and inseparable couples, the inevitable dominoes, which I don’t much care for, and boule, which I do…and am pretty good at, by the by…I beat Pascal the other day, and he’s been playing for eighty years. And I often stop by the centre, right bang in the middle of town, though the strides they’ve made with dementia mean there’s fewer friends there these days.
Sometimes I think about the old days, about taking care of mum in her last years, about the end of fossil fuels and how close we came to disaster, about the fight to make the changes we had to make to survive, about learning to live with less stuff, fewer walls between us all and no borders…about how the super rich squealed and the super poor found it hard to adjust when we learned to share what there was more equitably, but that’s history now, the bad old days…and I’m due to meet Beatrice for coffee about now…if you’ll excuse me. So, until next time, have a think about how you’d like things to be for you and let’s see what we can do to make it happen, tout a l’heure, a bientot…
Ciao Beatrice, come sta? Sit, sit…
You’ve been listening to me2mama, written, voiced and produced by the author, who must remain anonymous for the sake of his mum. Me2mama is a family affair. The assistant producer is the author’s daughter, Leah, and the associate producer is the author’s sister, and now co-carer, Karen. Title music is by Wes Hutchinson, with incidental music by Aakash Gandhi, Kevin McLeod, and Josh Lippi and the Overtimers, all amongst my favourite stars of Youtube’s audio library. Original music is by Leah. This podcast is a me2mama production, all rights reserved.