in which my guru shows me how to ‘live in the now’ and I offer thanks by way of a bowl of those cheesy puff-things and an ice cold drink as the sun sinks low in the sky…
Years ago, I became interested in the notion of memory, chiefly because my own is so bad. I love quotes and I collected some at the time which you can see on the website. Quotes that offer a clue as to why memory so often gilds the past, given how things turn out in the end… I was fascinated then by how memory works, why it does what it does and why some have perfect recall where others, like me and Michel de Montaigne as it happens, do not… you see where this is going…so please, stick around if you’d like to chew the cud a while, but be warned, nothing much happens in real time, except at the end, when mum and I have a gin and tonic in the garden.
Naturally enough, being with Mum is reviving my interest in memory. Because dementia is an odd thing and we often misconceive the condition, to my mind at least. Seen from the outside, dementia appears to rob us of our faculties, memory especially, to diminish the person and undermine our relationship with reality. All true, I’m sure, and depending on the individual and the symptoms of their particular form of dementia, the experience can be awful. So before I go on, let me be clear, I do not pretend to speak for anyone but myself and my mum. We’re lucky. I saw my uncle go through Alzheimer’s. Saw his bewilderment and fear, and his anger. I could only wonder at my aunt’s capacity to cope, which she did valiantly, caring for him over many years, without paid carers and only her two children for support. Now that’s love and care.
As I say, we’re lucky. It so happens that my mother’s dementia does not appear to often cause her to be angry or frustrated, her hallucinations are generally benign, and I’m told this is common with Parkinson’s dementia in particular. Depression, though she does get blue from time to time, is lessened now we’re home and in more familiar surroundings with people like me she can still recognise.
So it is that when I try to give my mother a cup of coffee or a piece of cake and all her attention is on the soldier in the room or the dogs that need feeding or the children in the garden who I’m pretty sure really aren’t there, I have the powerful sense that her reality, far from being diminished, is actually augmented.
Her thoughts and imaginings are clearly more real than the sticky cake or the cooling coffee held in my aching hand. And in trying to get her attention, I often feel like I’m interrupting a film she’s watching or intruding on a dream.
But it’s more than that. And if I pay full attention to the mumbled snippets she uses to describe what she sees, almost to me, almost to herself, I can even place some of what she’s experiencing in the context of her life. She’s may be ‘imagining things’ as we might see it, but she’s also remembering. All those sights and sounds are coming from somewhere, and what is imagination if not the mind playing wild and free with memory?
Though unlike Proust and his madeleine cake, conjuring a seven-volume, nine million-character, three thousand-page novel, Mum does not appear transported to another time and place, at least for very long. Once the first mouthful is taken, often absent-mindedly, once the taste buds do their thing, the children in the garden often fade away, especially if the cake is chocolate or coffee and walnut. And yes, I’m aware of the danger of using cake to dispel illusion and make my own life easier and the potential loss to the world of literature. Though to be fair to myself, that’s not my motive. Instead, the pure sensual joy of eating is a high not just for her, but for me too. To give such pleasure is hard to resist, and harder still for her it seems.
The current wisdom in ‘dealing’ with dementia, is never to contradict the sufferer. But just listen to the language in that statement. ‘Dealing’, ‘contradict’, and ‘sufferer’ are extraordinary terms to use, implying a problem to be solved and a person to be pitied. It never occurs to me to deny the visitors in the garden. When Mum asks me to feed the dogs, I take the remains of the cake and the cold coffee and tell her I’m on it. Some will say my approach is patronising even as others approve, but the plain truth is I’m rather envious of her augmented reality. Seems to me she’s found a way to beat being stuck in a wheelchair or in a bed. To take a trip and never leaving the farm without the help of stimulants other than that rather inventive and wonderful factory we call the brain. I know it may seem I’m romanticising things, but I sometimes wish I could do the same. The fact that she’s ‘making things up’ is, to me, more a source of wonder than worry.
Take the soldier and the ‘dogs’ for example. My mother was brought up in Alexandria in Egypt, where her parents, my grandparents, had a house at the very edge of the surrounding desert. They had dogs, plural, presumably for security, that lived outside and whilst not pets, nevertheless needed feeding. My mother was born in 1934 and she would have been five years old at the start of the Second World War, nine or ten when it ended. Between times, I know from my uncle’s tales of their youth which you’ll hear, they often had British soldiers billeted on them as they returned from the frontline in the desert or waited their turn to go out.
The children I can’t place precisely in my mother’s experience. Of course, they could be my sister and I, but I don’t think so. Usually, she talks about ‘the little girl’ sometimes in ‘the pretty dress’ and I get the sense that this girl is ethereal and unworldly, more spirit than flesh, more an ideal than a representation of the real.
Still, I can join in. If I can source the imagining in her life experience or sometimes pretend to, if she’s not too tired and I’m not too hidebound by my own one-dimensional attitude to the real, we can develop impressions and fleeting images into something more coherent, something very like a narrative that in turn delivers something very like comfort and joy. For me at least. A route in, a connection with her world. And with her.
Because from the outside, it can seem that mum lives in a kind of eternal present, which to us may seem to make her a prisoner of the moment. And yet most of us fritter our lives away with plans for the future and regrets over the past, undermining the whole notion of living in the present that is so central to so many enlightened philosophies. Take Zen for example. I like the payoff with Zen, but not the price. Sitting for long periods in uncomfortable poses trying not to think about the guy with the stick who will soon beat us over the back and shout, “Pay attention!” Wearing scratchy robes and concentrating on breathing, which I do perfectly well without much thought as things stand, is only for the committed.
Zen counsels us to live in the moment, to give up personal ambition, self-serving desires and all but the most fundamental requirements of bodily survival. At least as far as I understand it. And whilst there may be profound spiritual compensations, you have to be pretty hardcore to go the whole way. I’m not hardcore. Or not hardcore enough. I like the payoff with Zen, but not the price. I like frivolity, fun, and even excess, though in moderation, naturally. Mum, you could argue, has got a bit of Zen going on without a stick in sight or the scratchy robes and despite losing track of the narrative of her life, she is, like a wild animal tame enough to be fed, often acutely aware of her surroundings, alive to tastes and quick movements, some real, some not, responsive to the sound of the wind in the trees, and living fully in the present.
On bad days, Mum is disturbed by the interference of one signal with another. At least looking in from the outside. No matter how she twists the dial, she can’t tune in to one reality without the intrusion of another. And if you’ve ever tried to get an AM radio station with an analogue dial or hear a soft spoken friend in a crowded bar, you’ll know how she feels. I have bad days too; days when the hallucinations are a pain in the ass and I just want to get the coffee and cake down her neck so I can take a break before thinking about what’s for lunch. But they don’t come too often and usually sleep, or the lack of it, is the common cause.
But the bad days are rare and more often, now we are alone together in a bungalow, with plenty of cake and plenty of time on our hands, I realise there’s a chance to reflect on the past, to recall shared experiences, to look at old photos, to find things in drawers that I remember from childhood, and to be reminded of what was forgotten.
Which leads me neatly back to Michel de Montaigne, philosopher and bold explorer of himself, one of my personal heroes and a man with a terrible memory. This is from the beginning of his essay, Of Liars, published in French in the sixteenth century and translated here to English:
“There is no man so unsuited for the task of speaking about memory as I am, for I find scarcely a trace of it in myself, and I do not believe there is another man in the world so hideously lacking in it. All my other faculties are poor and ordinary, but in this I think I am most rare and singular and deserve to gain name and fame thereby.”
Moi aussi mon ami. My memory is notoriously bad and the subject of speculation amongst family and friends who cannot quite decide if I am damaged in some way, or merely stupid and who sometimes suspect me of pretending to forget as a convenient way to live without baggage. This, as Montaigne might say, is to impugn my character without good reason. I’m not faking it.
Montaigne finds many positives in having a poor memory. He claims his ‘misfortune’ has kept him from the evil of high ambition, from slavishly following the opinions of others—being unable to remember what they say—from repeating himself for the same reason, from bearing grudges and from lying, for fear he trip himself up. That’s a positive spin, if laced with irony, but one I find hard to share.
I am bewildered when reminded of times I cannot recall, frustrated by events I’ve lived through and forgotten and embarrassed by the seemingly perfect recall of others. What was the point in going wherever it was and doing whatever I did if the whole experience leaves no trace? I feel robbed of my own past.
As a consequence, I try to find ways to preserve the past. A long time ago, I made myself a box. It stood about the height of a chair seat and was wide enough and strong enough to sit on, being made of half-inch thick wood with a hinged lid. My ex-wife painted the box in bright colours with a geometric pattern of her own design. I’m not sure why. Inside, I kept…stuff, aide memoire, you might say, anything from photographs and letters to theatre tickets and hotel reservations. It was only a few months ago that my ex brought the contents of the box to me here at the bungalow, but in a couple of plastic bags. She kept the box. I’ve had a quick look inside the bags, and I’m thinking I may allow myself an hour or two of sustained nostalgia this very evening, after the care call, when mum is sleeping and I’m alone. But I have to say my first impression is old tat, desiccated spiders and orphaned bits of paper. I can remember certain items, my grandfather’s cigarette rolling machine for instance, but I can’t attach much meaning to it other than the fact that it once belonged to him. There might be more in the letters, but I have the feeling I’ll be reading about someone who is a stranger to me now, seen through the eyes of my correspondent. Obviously, I have no record of what I may have written and I’m sure my own letters are not in anyone else’s box of memories.
So, as I settle myself into this life with mum, I know I should focus on the present, learn to live in the here and now. I’ve checked out the local gym but I need to find someone who can sit for me. Someone local who doesn’t charge care agency rates. A neighbour maybe. Perhaps the Celebration of Life will be a chance to scope somebody out.
Speaking of which, the afternoon is almost over and we’ve yet to share a drink, mother and I. Five o’clock may be early by other people’s standards but for us, with bedtime around seven, the yardarm is right where it should be.
‘Shall I get us a little drink gorgeous?’
I can catch the headlines on Radio 4 PM programme whilst I make a gin and tonic for us both. Light for her, rather more hefty for me.
Mum’s alert when I return with our drinks and a little bowl of cheesy puffs I’ve only recently found she enjoys and can eat without coughing.
‘Here we are my darling, one for you, one for me. And I brought some of those cheesy puffs.’
Still she looks surprised to see me and not altogether certain who I am. I can see words forming on her lips. When I sit and when I offer up the gin and tonic, she takes a sip and glances quickly to her left as if something or someone has caught her attention. Her lips purse ready for another sip of the gin and her fingers pinch at my hand as if to help me hold the glass.
‘Good. Not so many planes today are there? It’s warm though. And just as I say that, a plane comes over. It’s springtime isn’t it? Try another one of these?’
It feels colder having been indoors and I wonder if we should still be in the garden, even though the sun is out. Maybe there are no shoulds. Or maybe, as I suspect, there’s a whole rulebook of shoulds I should follow, and don’t. A rulebook that almost certainly bars me from offering a sundowner to a Parkinson’s Dementia patient. But why? Why, when you’re old and infirm and plagued by the symptoms of a serious illness, are you expected to be teetotal? Surely, that’s when you need a drink most. Perhaps there are health concerns. Alcohol abuse leads to cirrhosis and any number of other serious conditions that in turn cost our health service a good deal of money each year. Perhaps alcohol affects the action of the Parkinson’s medications thought he Parkinson’s nurse says no. My mother currently takes around sixteen pills a day to increase the dopamine messengers in her brain, to reduce the tremor she doesn’t have and to counteract low blood pressure and so prevent falls that can’t happen anyway because she can’t stand up to walk—and that’s not because of the gin, by the way.
The truth is, the rationale for no alcohol is all of this and nothing at all. Even though I’m new to all this, to my mind these petty justifications don’t stand up to scrutiny. I see why authorities and medical professionals like applying strict health and safety measures to their patients’ lives. Risk of any kind, brings the potential for harm and harm brings the potential for repercussions and must therefore be minimised. Risk, in other words, is always a bad thing because it’s about the caregiver, mainly.
Well, not in this care home. Here, a gin and tonic and an afternoon in the garden as the sun sinks lower and the air cools is precisely the kind of risk we like to encourage for our clients. The kind of risk that makes you pretty certain you’re alive. The kind that helps the aches and pains fade into the background, that kind that makes you aware of the sun on your face and the warmth of the breeze and the promise of summer to come.
You think I’m projecting? All very well for me, the carer, but how do I know my charge is of the same mind? I’ve no proof. I could ask her, but I’ve already learned that binary questions don’t work well with dementia because all comparisons are odious and most are hard to compute when your inner life is as rich as my Mum’s. Instead, I have to guess and take a chance on what works based solely on this notion: ‘What would I like if I were her?’
Putting yourself in someone else’s shoes may not qualify as a principle, but as a strategy, it has one important merit. The application of experience and a little imagination, together with a reliance on intuition as opposed to the rulebook, can, when directed to someone you’ve known all your life—and loved too—mean you end up sharing a simple moment of pleasure and reflection, like this.
‘Are you warm enough my darling?’
‘Here, have bite of that…bite…mmmm…oh you are lovely.’
Next time, my sister arrives from Canada, we prepare for my father’s celebration of life and mum’s homecoming party with a barbeque and I’m left alone again, with the box of memories, only without the box of course.
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 Kevin Macleod, Jon Sayles and E Jammy Jams, full credits on the website. Original music is by Leah. This podcast is a me2mama production, all rights reserved.