The Big Story: Mary Kenny - the reluctant carer

Meals and household chores. Personal care. Laundry. Shopping and cooking. Dealing with household maintenance and adaptations. Dental monitoring. Pharmaceutical and medical. Scratching – invalids can suffer from tormenting itches and can't reach to scratch. Chiropody, hair washing and cutting arrangements. Valeting. Administrative paperwork – bills, cheques, bank statements, solicitors' correspondence, invoices, remittances (the carer becomes the caree's attorney). Social and therapeutic support. Toilet issues, including bowel monitoring. Grooming issues – doing the manicure of the caree. Pensions and tax. Recreation – taking out, etc, or arranging outings. Technical maintenance (phones, lifelines, etc.) Companionship. Providing reading matter or reading aloud. Transportation. Holiday plans, if applicable. Passports and similar. Money management. Disability vehicle fixer. Eye care – spectacles. Dealing with local authority issues. Managing extra carers and help. Et cetera.

This was not how I planned to spend my 50s and 60s, sometimes called, optimistically, "the harvest years". I thought I would have more freedom, more leisure, more travelling. I watched other contemporaries – often couples – talk merrily about flying off to holiday hotspots, but any holiday plans involved my taking care of a husband less and less able to do anything for himself.

We had a brief time in the autumn of 2003, near Seville, but this was also the beginning of The Falls. As his legs were growing weaker, Dick would lose his balance and fall.

The Falls became a source of unrelenting anxiety. The fear had started in a Spanish hotel, where the distance from the bathroom to the bed seemed, to Richard, vast – and without wall or furniture support, for he had learned to do furniture walking, holding on to pieces of furniture as he progressed – and the polished wood floor seemed to him like an ice rink. Was I blamed for choosing that hotel in that place? I felt responsible, anyway.

At one point, in 2009, I noticed that his lower body was purple with bruises. An observer might have thought him a victim of domestic violence, but it was – only – the result of The Falls: falls in the bedroom, on the lavatory, in the hall. I'd notice how much more frail his legs had become, putting every ounce of energy into each faltering step.

I would dread, then, The Thud: the sound when he fell, either from bed or when trying to walk. His own response was often admirably patient and stoical. He wouldn't complain, just lie there trying to get himself up, or waiting until I got him up, or, if our son Patrick was in the house, both of us could often manage to do so, although it could take an hour and a mighty number of heaves. Sometimes the paramedics had to be called to raise Richard from the floor.

Leaving the house – especially if Richard were alone – became more and more problematic. I tried to maintain the habit of spending a few days of every month in Dublin , but from 2004 onwards, there was always a worry about The Falls, and there had to be someone on hand to make sure he was all right.

But on several occasions Dick asked me not to leave him, and I cancelled trips. I cancelled visits to London, too, and more reluctantly, to Paris – a non-refundable Eurostar booking. But could I have enjoyed Paris if overcome by the guilt of abandoning him?

I did get to Paris in 2008, and my cousin Brendan said to me, when I described the situation: "It can only get worse."

He was being truthful, but the phrase made me miserable: "It can only get worse." And indeed, it did.

rom around the period when The Falls began in earnest – from the autumn of 2003 – I became subjected to cyclical episodes of crashing depressions. I would not describe myself as a depressive person: everyone has ups and downs, but I am normally reasonably resilient. But circumstances now sent me into that often-described black pit.

During these episodes, all I could see around me was darkness, and a feeling of being low, low, low down in that pit. Weekends were the worst: I would experience this draining sensation, as if everything in my body was at a low ebb, every particle of energy being sucked away, like an ebbing tide on a shore.

One day, in the spring of 2004 – around the time I turned 60 – while driving between Deal and Tunbridge Wells, the thought came to me that I could fake a car crash, and end my life, right here, right now.

A faked car crash, which involves no one else, is a known way of taking your own life. The thought began to dominate my consciousness and I had to take deep breaths to eliminate it. Deep breath and count to ten: turn on the radio: deep breath and count to ten. A programme came on the radio presented by a friend of ours, Andrew Brown. Concentrate on Andrew Brown, and his interesting descriptions of Sweden. Deep breath. I could end this misery right here, right now. Deep breath. It's a sin. It causes untold sorrow for those left behind. Deep breath.

The terrible, crazy, frightening moment passed, but since it struck I have identified with those who do take their own lives, when sunk in depression. You have to stand against suicide: a society has to try and discourage it, because it causes so much grief. But when that profound despair hits, the idea will always occur. It presents itself as a way out, a final blanking out of all the misery.

My GP, who has always been terrifically helpful, offered me anti-depressants when I mentioned these moments of despair, but I declined because I felt that the problem wasn't one of mood, or a chemical imbalance that can be corrected by a pharmaceutical solution. The problem lay in my circumstances. I was unhappy because I felt so dreadfully trapped.

This was how I would spend the rest of my days: as a carer to an invalid husband, in a small seaside town in England, which, though it might have kindly people, was not my choice of location.

If I could just change the circumstances, the depressions would lift, I believed. And of course, I could change the circumstances temporarily: I could get more help with minding Dick, and escape, for brief interludes. And when I did, I came to feel that the most beautiful phrase in the English language was: "This train is now departing for Charing Cross."

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And how about Richard himself? How did he take the involuntary change in his own life circumstances? The alteration from being a man of independence and even detachment from bourgeois and domestic life – his greatest fulfilment, during his active life, came with travelling and writing – to dependence, increased disability, falling, and indeed pain?

Looking back, it was at first so gradual that he didn't seem too unhappy. Between 1996 and 2003, his life was manageable, even if there was decline. The eternal wanderer actually became more domesticated, and certainly more uxorious: now we really were entwined in coupledom.

I remember picking him up from an appointment, and noting the look of thankfulness, recognition and relief in his eyes as he spotted me. I had seldom seen that look in our salad days – merriment, laughter, pleasure, yes, but not gratitude and relief for my presence, as though I were the lifeguard saving the swimmer at risk of drowning.

He enjoyed reading and watching nature programmes on TV and seeing friends at a lovely local pub. In our prime, we had both (alas) been heavy drinkers: I was an alcoholic vixen, Dick more a regular boozer who sometimes did so excessively (his excuse, which indeed was plausible, was that he was too shy to do a journalistic job without a few drinks: where I, he said, was "perfectly effervescent" while sober, and a termagant when drunk). I quit drinking, thankfully, in 1991 – best change I ever made – and after his stroke, Dick moderated greatly. But the pint of real ale was a genuine pleasure to him, especially at the Prince Albert.

But even the trip to the pub began to become an obstacle course – staggering to the door of the pub even before he had had a single drink; through the door only with the help of two men. Then it all began to close in and less and less was possible. Dick himself went through cycles of anger, cycles of grumpiness, and then times of laughter again.

His sense of humour has never deserted him, and neither has the stoicism bred into him by the English stiff upper lip. "Mustn't grumble." "Don't make a fuss." And the immortal: "Keep calm and carry on." But he could be bad-tempered. On one occasion, when we were having a meal with friends, he told me, with a flash of hostility, that I had a "witch's laugh".

One day I said to him: "Do you think I'd have been a more fulfilled person if I'd gone to Oxford – or Trinity?" (I left school at 16 and am very chippy about it.)

"No," he replied. "Because you are a discontented person. You would always be discontented." Maybe so, I reflected, although discontent is surely the soil of ambition.

Old couples can get crabby with one another anyway. One day I was talking about painting and the 19th Century pictures in the Tate.

"I always like narrative pictures," I said.

"Yes, you do," he replied, in a dissenting tone.

"You don't really like my taste in pictures, do you?"

"No, not really."

"You don't like my taste in poetry, much, either, do you?"

"No, not a lot."

"In fact, we've nothing in common, really. You've no interest in the theatre. You don't like anything I like."

"No, I suppose not."

A long pause. Then he says: "But I love you just the same!"

I laugh, and say – "On cue! It took a moment, but you got there!"

Later, as we were getting into bed, I said, wearily, thinking of a number of worries: "Oh, well, we'll be dead soon, and that will solve all the problems."

"Yes," he said, good-humouredly. "But not soon enough!"

**********

Although outwardly, you are, as a carer, performing all these responsible duties and apparently devoted to someone else, inwardly being a carer can also make you self-centred. You begin to feel you have given so much of yourself to the central issue of the caree's welfare that you have to conserve some little part left for yourself.

I told myself, "I'm still entitled to a life". If I had a cup of coffee in the kitchen before bringing one to Dick, I'd tell myself: "I'm entitled to look after myself." But I have to keep saying that to justify anything. "I'm entitled to go to the cinema." "I'm entitled to a week's respite."

Yet I have felt ashamed, often, of my own self-centred preoccupations. In November 2005, I wrote in my diary: "If I had any humanity, my heart would be full of pity and compassion for Dick: to watch him dress, so slowly and gingerly, like a child putting on its first clothes; to see him get to his feet, sometimes after two or three attempts; to see him walk, with faltering steps, from the bedroom to the bathroom; an old man for whom everything is an effort, and yet he has the character and the fortitude to do it all, to keep going because that is what you do. My heart should be consumed with pity, if I had real humanity. But I am in the position that Yeats described so well: 'Too long a sacrifice/Can make a stone of the heart'. My pity for him is stifled by the despair I feel about my own life. In 2010, I will be 66. Will I still be rising each morning to attend to the kitchen, the laundry, the household chores, making breakfast and serving it to him, fetching the papers, facing a day squeezing journalistic deadlines into the interstices of housewifery and caring? Yes, I will, unless I change things."

But I wasn't able to change things; or I wasn't able to change the central thing, which was that I was responsible.

The sense that this was to be a life sentence was growing on me. Friends quoted Richard Burton (the Arabist, not the movie star) who had written on his wall: "This too will pass," but the coda, for me, would be "yes, and so will I pass".' I would find some relief from writing mournful poetry – I composed a whole collection, darkly entitled La Prisonniere, being a lamentation in the form of free verse. (Alternative title: The F**king Kitchen Sink.) I developed a nasty case of psoriasis, seemed to have a permanently upset stomach, and sometimes dreadful episodes of irritable bowel and nausea.

Dublin always was the great escape – the great respite – for me. I felt like kissing the ground when I'd arrive, and leaving, I felt all the lonesomeness of the Exile of Erin.

My sense of rootedness in Ireland runs deep anyway, but there was another element in play: connecting with what I thought of as my true identity. In Kent, I felt myself to be defined as someone's carer but when I went to Ireland, my identity was altogether different: there I saw myself as a working journalist, a competent professional woman who was treated as an independent adult – sometimes, even, with a certain esteem. My Irish identity was fulfilling and intellectually rich; my English life seemed repressed, petty and intellectually deprived. This also set up a tension which could trigger depressions.

You'd think religious faith would buoy me up a little: it does and it doesn't.

Religion helps you to contemplate that suffering; it doesn't promise you – not one bit – that your suffering will be alleviated or you will soon be liberated from it. You won't be. So get on your knees and pray for fortitude.

But faith does help you to reflect on the afflictions of others, and many people have great afflictions. I see mothers with handicapped children; mothers who have lost their children; friends struck down in their prime with chronic illness; friends with cancer, in their prime.

**********

Gradually, gradually, decline, decline, decline: the legs seizing up, the bad arm ever more paralysed. By the autumn of 2010, it was sometimes taking me 90 minutes to get him showered, and there were increasing difficulties in managing the toilet. Sometimes he'd need to get up two or three times during the night, and I would, of course, get up with him to ensure he didn't fall. Even so, sometimes he did fall. And then in that late autumn there was a serious fall, an absolute and final fall.

It was 2.45 in the morning in our small terraced house in Deal, when Dick suddenly fell to the floor, from bed. There was the awful thud. And then silence. He lay stunned, not answering my calls to him. He was momentarily unconscious but he hadn't the classic signs of concussion. I called the ambulance. The paramedics quickly arrived, examined him and lifted him back to bed. But there was another fall around 8am and again the paramedics came. This time they deemed he should be taken to Margate Hospital, and passively, he agreed.

**********

After some weeks in hospital, the final assessment came, towards the end of October in 2010. There was a meeting at the hospital to decide on Dick's future, led by the care manager of the local social services. I had a heavy cold – I had a series of heavy colds at this stage, accompanied by a hacking cough – and the social services chief said that, in her view, caring for Dick at home would be too much for me at the present time, and it was her advice that he should enter residential care.

And thus it was that my husband was transferred to a residential care home about half a mile from our house.

I felt sad – has it come to this? Dick in an old folks' home? But I also felt relieved that the decision had been taken out of my hands. And I also felt worried about my own health: I was, at the same time, due to have a series of chest x-rays and bronchial investigations because of my hacking cough and persistent colds and breathlessness.

Richard seemed a bit dazed by it all.

Shortly after he was admitted, I went to see him, reporting that there was snow outside, and it was very cold. "Then why did you go out?" he asked me.

"Well, to come here."

"But you're staying at the same hotel, aren't you?"

He said he wanted to get up and walk. "But, my dear, you can't walk at the moment," I said, trying to be gentle.

"I can walk," he protested. Later he would say that I was "part of the conspiracy", pretending that he couldn't walk. He still occasionally imagines that he could perfectly well get onto his feet.

**********

Yet I couldn't rest easily if Dick felt abandoned in the care home, even though I'd visit him every day. I'd have him home at weekends: I wanted him to have some home life, and to know that his family was still there for him. He complained of being "dumped", and would say "get me out of here". This made me feel uncomfortably guilty, although the owner of the care home sought to dissuade me from having him out at the weekends. "You have a good quality of life – but you'll wear yourself out caring for him yourself."

It was the perfect utilitarian argument: why should two people have to have a miserable life when only one is obliged to do so?

But still, although it was a struggle, and incurred extra expense, I still felt I should do what I could for him. When I'd deliver him back to the care home on a Monday, I'd explain: "Dick, dear, you must understand that I'm not able to care for you all the time, but it's lovely having you home part of the time." All the same, inwardly, I'd breathe a sigh of relief as I drove away.

As it happens, I spent a week in an old ladies' home myself in 2008, convalescing after a hip operation. It was clean and well-run, the location was pretty and the food was perfectly nice. But it was deadening from the point of view of mental stimulus.

Only on the last day of a week's sojourn did I discover that my normally silent neighbour at the table had been in the WRAF during the Second World War, and worked on radar with Battle of Britain pilots. Yet there was nothing in that environment which would have reflected her intelligence and accomplishments – and fascinating memories.

Richard's care home was similar: the day-room featured groups of old people seated around in a square formation. Some were perfectly compos mentis, but some had dementia problems; one old man who was seated near to Dick was constantly calling out for his mother – "Mamma! Mamma!" – and whenever I would appear, he seemed to think that I was his mother, and would beg me piteously to come and help him, sometimes catching at my arm as I passed.

Dick was sometimes patient and accepting, sometimes grouchy and bad-tempered, sometimes in denial. He sometimes accused me of "being part of the conspiracy", and harking back to merrier times when we had lively, but generally amicable, discussions about the Catholic-Protestant divide, he'd say more darkly that I was "an agent for Vatican intelligence".

"He's grieving for the life he once had," said one of the nursing staff.

I'd visit him usually twice a day, plying him with biscuits, sherry, the papers, a CD. But after 2010 he ceased reading – which had been a lifelong pleasure. The eye specialist said that, although he was very myopic, he could read, but something in the eye and the brain didn't connect any more. He would just turn the pages of what were once enjoyable sources of reading.

Sometimes I'd come upon him sitting like Rodin's The Thinker, looking utterly wretched, and I'd feel such a surge of pity and guilt. Then I'd be plunged into depression again, and I'd go off to St Margaret's Bay, nearby, from where the white cliffs of Calais can be seen with shimmering clarity and whiteness. I'd just sit there, looking out over the Channel, brooding. Like Dick, I too was mourning for the life I once had. There was France! The beginning of the Continent! Liberty!

**********

Euthanasia often arose – and arises – in the media, and indeed in the courts, in both Ireland and Britain, where "right to die" cases became a trend, as did the fashion for going to Switzerland to be legally euthanased at the termination clinic called Dignitas. Dick and I had spoken about this issue of assisted suicide in times gone by, when he was in the full of his health.

Being a vague Anglican, he would take a basic Judeo-Christian approach to ethics, without being too vehement. But he certainly was against euthanasia when we had discussed it. "Asking for trouble," he'd say. Apart from the ethics, think of the disputed wills, the lawyers' arguments, the family quarrels – all bad enough, in the annals of family history, even without "assisted suicide" issues.

My own view, though rooted in Catholic values, was nonetheless best summed up by the Victorian couplet, originally written ironically:

"Thou shalt not kill,

but needst not strive

Officiously to keep alive."

But by 2011, Richard was himself making ironic allusions to mercy killing. "What would you like? A cup of coffee? A sherry?" He'd reply "A glass of hemlock." Other replies included "a humane killer" and "a loaded revolver".

**********

In 2012, I was diagnosed with bronchiectasis, a lung condition which is classed as a chronic obstructive pulmonary disease. It can be reasonably well managed, but the breathlessness, chesty catarrah and sweats were endemic.

Yet once diagnosed, the condition was better controlled, and I began to feel more energetic. If we could just move house – go somewhere bigger, which would accommodate all the paraphernalia an invalid requires: the medical bed, the wheelchair, commode, hoist, orthopaedic chair – we could bring Richard home. He came to accept being in the care home, but often looked miserable. And there was another reason: the cost of residential care. We were obliged to self-fund because Richard had some funds in a trust. But the money wouldn't last another year.

And so with the help (both practical and financial) of our son Patrick, a house move was arranged, and on February 1, 2013, I duly brought Dick home – from which time I became his full-time carer, with support from agency staff. I was advised against taking this on by friends and some family members. Yet I felt it had to be done.

I felt it was right to bring Dick home and take care of him full-time. It was time. I was now able to do it, so now is when I should do it. Perhaps I had also come to a point of acceptance. For years, I had kicked against my fate, of Minding Dick. Now, coming up to my 70th year, perhaps it was time to practise acceptance. He had been obliged to practise acceptance. He hated giving up the life he had loved as a roving writer. He had often feared that phrase from the Bible: "The night will come when no man will work."

And to be truthful, being the full-on carer certainly is demanding, even with the back-up care and others helping out, including Patrick. The responsibility is still mine and will be for what remains of my life. Each day, my first and last thought has to be about Minding Dick.

Exclusive edited extracts from 'Something of Myself and Others' by Mary Kenny, Liberties Press, €14.99. (www.libertiespress.com). Mary will sign copies of her book at Eason's on St Stephen's Green, Dublin, at 1pm next Saturday, Dec 7