WAS THIS WHEN it began? I was talking to my father on the phone. I was in Australia and he was in England. I was giving him some personal news when he suddenly broke in and said "Bye!" just like that, and hung up. I stared at the receiver for a long while before replacing it, wondering if I'd heard right.
Was that the first sign, the first small uncharacteristic act that should have warned me that something was amiss? But is it really possible to pinpoint the first sign? The medical evidence is that, with this particular disease, the first distinct manifestations represent a later stage in the whole process. They're like the first bubbles in water that's approaching boiling point; they mark a point in the heating process begun some time before. There may have been many signs that my family and I missed or ignored simply because we weren't looking. The phone incident was one. After my initial astonishment, I thought nothing more of it and told no one about it. I just made a note of it in my diary.
So what symptoms did we first consider worth discussing? What overt precursors were there of the untreatable and incurable brain disease that would eventually encage his mind in a disintegrating body and drag him rapidly, yet far too slowly, to his death? Actually, the question should cover more ground than that. It should ask something like: what symptoms did we first notice and then fail to discuss openly with everyone in the family, especially my mother?
Whatever the questions, the answers aren't hard to find. We're a writing family. Dispersed around the planet for four generations, family members were schooled early in the art of written communication. Letter writing cemented us into a unit even though we saw little of one another. For me this process began in the late 1950s when my parents were living in South America and sent me to school in England. From then on, whether I was in Europe, Africa or Australia (where I've lived since 1980), I received a letter from my mother fortnightly – or at the very least monthly – and I dutifully reciprocated. We filed each other's mail over the decades. After her death in 2001, I retrieved my letters, hundreds of them, from her archives. I have them all now, hers and mine. We must have filing-clerk genes. And then there are my diaries, going back more than 30 years. So there's a written record.
Dad's increasing eccentricity may have been a sign. In 1985, he and my mother had been living in semi-rural Surrey, in England's south-east, for some ten years after a lifetime of global postings. That year, while on holiday in England with my wife, Sue, I wrote in my diary:
Dad is more absentminded and eccentric than ever. He laughs and talks to himself a lot, loses himself in his sentences, misuses words, cuts himself off mid-sentence. He drinks a lot, or rather, drinks regularly. It worries me.
My two sisters, Gill and Jean, both younger than I and also living in England at the time, were beginning to worry by then too. Gill was finding my father cantankerous and difficult, as well as befuddled, but didn't agree with me that his drinking lay behind it. She felt, rather, that it had to do with his inability to adjust to retirement after his engaged, glamorous, globetrotting life as a director of a multinational corporation.
Up to a point I agreed. He himself acknowledged how frustrating retirement had been. In a memoir completed in the decade after he retired, he described his sense of loss at being so suddenly and completely ejected from the organisation that had been central to his life from the age of fifteen. "I became a has-been," he wrote.
Jean, a psychotherapist, viewed his mental state with a trained eye. While I was in England, she rang me out of the blue once to discuss him. He'd deteriorated rapidly within about a year, she said, but she was reluctant to point this out to Mum for fear of worrying her. She said his attention span was becoming shorter. Mum was reluctant to take him anywhere because he got bored quickly and insisted on going home. He was forgetful and often confused his facts but belligerently insisted he was right.
I'd noticed some of this, but mostly I was struck by the slurring of his speech. It was as though he were constantly drunk. At my parents' 45th wedding anniversary party, which was the climax of our UK visit, he was slurring so much that two guests asked if there was something wrong with him. I wrote later:
The old man hums tunelessly and loudly to himself and often goes off into the garden to be alone. He snaps irrationally at his family, us, but no sooner has that been done than his mood brightens once more. His gait is tending towards a shuffle; he is unsteady on his feet; he is beginning to stoop.
That year Dad was 63. Mum's letters over the next two years mentioned his increasing stiffness and walking difficulties and his "bad back", but seemed to accept all this as a normal concomitant of ageing.
His decline was inescapably evident when he visited Australia in 1987 with Mum and Gill. When I met them at the airport I was shocked at how much he'd aged. My diary: He mutters incoherently as though perpetually drunk ...
Mum slipped unquestioningly into the role of interpreter and mouthpiece for her husband. Left to his own devices, he got into trouble. On a number of occasions he lost his way in McMahons Point, where Sue and I were living in Sydney. Once he disappeared on the way to join us at a restaurant only five minutes' walk from our house. This was uncharacteristic for a former Royal Air Force navigator who, in World War II, had been able to position his bomber over a target in northern Italy on a cloudy, pitch-black night after a 1200 kilometre flight from Malta.
But then I wondered if perhaps he wasn't getting lost, merely delaying on purpose. Maybe he was scrabbling to maintain some control over a situation that was rapidly getting away from him. The company director was out of a job. Now he could see his time-honoured position as paterfamilias being sabotaged as well. Malign forces were at work, and the only way he could fight them was by masking them behind smokescreens of his own making. By pretending he was doing some of these strange things on purpose, he could retain some of his dignity and authority.
Subsequent letters from Mum spoke often of Dad's drunken gait and of his falling more frequently, hurting himself badly on occasion. It was clear from the letters that looking after Dad was becoming ever more burdensome for her, though she never admitted this openly to me. I found out later that she didn't admit it to other family members either. There was, as one of them said, a "conspiracy of silence" about Dad's condition and what it was doing to Mum. Her letters hinted at a titanic struggle only behind the hedge of expressions such as "We soldier on here" or "We plod along" or "Life goes on". They were subtly infused with that spirit of Stoic devotion that would, in later years, make her smilingly determined to continue caring for him to the very end.
DOCTORS BLAMED DAD'S falls on osteoarthritus and recommended he have both hips replaced. On a visit to England in mid-1989, shortly before he was due to have the operation, I found him a shadow of his former self. Dwindling confidence made him reluctant to speak in case he made a fool of himself and embarrassed others. He'd told Jean he hated and resented his condition. In a man who had felt omnipotent in his forties, this was understandable, as was his desire to hold on with both hands to what little authority and self-esteem he retained.
The strain on Mum broke through on rare occasions. Once, while discussing Dad with Jean, she burst into tears. Recovering hastily, she said: "I'm sorry, I shouldn't cry in front of my daughter."
"What utter nonsense," Jean spluttered. "If you can't cry in front of your own daughter, who can you cry in front of?"
Dad eats an awful lot. He sits down [at the dinner table] before anyone else and begins eating bread or cheese or whatever is to hand. During the meal he drops food on the floor but insists on bending down to pick it up. This means that now and then he disappears from view, the only indication of his presence being the occasional grunt. On finding the dropped scraps he pops most of them in his mouth ... Mum, giving little away, just says something like "Oh, Wilf, really." And that is the fundamental trouble with my parents: they give nothing away ... they have spent their lives covering up their true feelings, hiding their emotions behind screens of propriety and good manners.
The hip operation was a success. But hopes that new hip joints would solve Dad's problems were soon dashed. When, in October 1989, he was diagnosed with Parkinson's disease, I felt relieved. Notwithstanding the seismic impact the diagnosis had on the rest of the family, my parents remained calm. In fact, they too were relieved, being convinced that, with an explanation at last for his behaviour, proper treatment could begin, the ugly symptoms would go away and life could regain a semblance of normality. I felt this was an opportunity for a new beginning, not just for Dad, but also for the whole family. There would be Meredithglasnost.
But, despite all our hopes, the treatment for Parkinson's had little or no effect. Because it wasn't Parkinson's.
MY FATHER, WILFRED, married my mother, Joan, in the Church of All Saints, Alexandria, Egypt, in 1945. He was a tall, handsome, self-confident flight lieutenant in the RAF's No. 55 squadron. He had flown and survived 82 bombing missions that had killed nearly half the squadron's crew members. Joan was a bright, pretty, rather self-effacing Wren (member of the Women's Royal Naval Service). The pair had been childhood sweethearts. After the war, as my father climbed the corporate pyramid, they moved from one country to another every few years. The higher he climbed, the more he relished the life of a multinational executive and the more glamorous life became for both of them. By the time he was near the summit, Mum was leading a life that many dream of: she hobnobbed with princes, presidents, ambassadors and magnates; she accompanied my father on business trips to exotic locations; she ruled over beautiful homes where servants did the hard work.
However, this lifestyle came with a Faustian price tag: her total and unconditional loyalty to the company and the surrender of her independence to its interests. Anything less would jeopardise her husband's career or, worse, besmirch the company's good name.
The level of stress that this responsibility induced in her was high; she would frequently break out in a rash when facing particularly onerous social commitments. Nevertheless, she paid the price without question, considering it a small one for what she was gaining. The demands that the company's rigidly patriarchal world view imposed on her were no more than those she had grown up with, and the fact that they cocooned her in a gender time capsule seemed not to bother her. She felt secure in it.
I realised after Dad's retirement that she'd come to see him, more than his company, as the provider of her affluent lifestyle. He was the one she was grateful to. This was one of the elements that fuelled her all-consuming devotion to him in his last years; she told me once that looking after him personally was the least she could do in return. At one time I thought that, brainwashed over a lifetime by the company to maintain loyalty, due decorum and support for its patriarchal hierarchy, she was primed to continue in that vein through my father's decline. But now I don't believe that. I think it was love, pure and simple.
FOR TWO AND a half years after the Parkinson's diagnosis, Dad's condition worsened steadily, with more downs than ups. Less and less able to keep his balance when standing, he fell more often, usually with distressing consequences. Each fall left him with yet more health problems: bruised ribs, a broken wrist, a broken finger and a gash on his ankle that took more than a year to heal and eventually required a skin graft (with at one point doctors even discussing amputation). More than once he had to go into hospital simply to allow his various wounds to heal. He could no longer walk unaided. From sticks he graduated to a wheeled walking frame, which my parents christened "JW" (for Johnny Walker, his favourite whisky), then finally and inevitably to a wheelchair.
As if Dad's balance problems weren't enough, he was also finding it increasingly difficult to swallow his food and would frequently choke frighteningly as it slid into his windpipe. To help him, Mum initially cut the food into tiny pieces and later put it through a blender. His swallowing difficulties seemed linked with speech impediments that required therapy. But therapy didn't help. During one visit to my parents' home, I wrote:
Speech is well-nigh impossible for him. He tries so hard to say things but quickly lapses into incomprehensible burblings and slurrings. It's as though he's trying to get the words out quickly before incapacity strikes his speech mechanism, speaking fast and then suddenly trailing away, trying again and again without success, and finally gritting his teeth and roaring to himself in utter frustration. It's terrible to watch ... One's heart goes out to the Wilf Meredith locked inside the decaying body, the spirit that I think burns brightly and which, like a prisoner in a dungeon, can only glimpse the outside world from afar.
And yet, still, against all the other background clutter of his symptoms, there stood out now and again those little acts that to me spoke of defiance or stubbornness, an unwillingness to yield his position as head of the family, to become a helpless invalid.
He breaks up conversations by rising suddenly from the table; demands that a light be turned off or that he be taken for a ride in the car; sets off to climb the stairs on his own (strictly taboo).
Dad's symptoms continued to mount. Incontinence was followed by eye problems that made it impossible for him to focus. Reading was now out of the question, and there was no telling how much television, one of his last remaining pleasures, he was able to absorb. He seemed to be slipping fast and none of the doctors and specialists he was seeing appeared to know what to do about it. On March 27, 1992, I wrote:
We should be able to choose when to die, and how. We shouldn't have to suffer this. Why can't we go out with dignity?
Mum may have had similar thoughts, realising deep down that there was only one way all this would end. In one letter she wrote: "Things are not going to get any easier and one can only live day by day, tackling the problems as they crop up." In another she wrote: "It's a cruel complaint to end his days with."
The mental and physical strain that Dad's illness imposed on her was beyond my comprehension, and remains so to this day. I simply don't know how she bore it. What she achieved at the age of 70 and over – as nurse, carer, housekeeper, cook, chauffeur, business manager and secretary – would have crippled many a younger person. And yet she rarely hinted at what she was going through. Any sympathy that others might direct towards her she tended to deflect towards him. In her view, he was the one who needed it more. Nevertheless, whenever I saw her (roughly every two years), her physical condition made it clear that the burden was taking its toll: she was losing weight, she was stiffer and less steady on her feet, she seemed to be shrinking. I wondered how long this could go on.
There came a stage when the physical demands of the daily round of chores – from showering, toileting, shaving, dressing and getting Dad downstairs in the morning to getting him upstairs, undressed and into bed at night – became too great. Gradually, more helpers appeared on the scene: carers, nurses and therapists of one kind or another. Gill would come down from London on most weekends to give Mum welcome relief. She and Jean lived close enough to be able to help in the event of emergencies, for instance when he had serious falls that required hospital treatment.
Early in 1993, suspecting that Dad's condition might be something other than Parkinsonism, his neurologist referred him to specialists in London. A week of intensive tests at the National Hospital for Neurology and Neurosurgery established that he was suffering from Steele-Richardson-Olszewski Syndrome, commonly called progressive supranuclear palsy (PSP).
There could be no doubt that this was – at last – the right diagnosis. His symptoms fitted exactly the diagnostic description of the disease. He was a textbook case.
PSP IS A degenerative disease of the nervous system and one of the so-called Parkinson's-plus or atypical Parkinsonism conditions. It affects more men than women, generally between the ages of 50 and 70. Its clinical features were noted in 1904, but only in 1962 did the three Canadian neurologists who gave their names to the disease classify it as a distinct disorder. The PSP Association of the UK describes it as "an ugly cousin of Parkinson's and Alzheimer's".
Although, in my father's case, speech and swallowing problems, limb rigidity, loss of balance and unexpected falls were the most noticeable early symptoms, eye movement disorder is PSP's hallmark and usually provides conclusive proof of the presence of the disease. Other common terms for the disease are gaze palsy or Mona Lisa disease, referring to its effect on the eyes. The symptoms have their origin in damage to, and destruction of, neurons, or nerve cells, in and around the upper brainstem. Nuclei (clusters) of neurons in that region control muscles that move the eyeballs. The problem seems to arise somewhere above these nuclei, hence "supranuclear". The word "palsy" means paralysis.
The ultimate horror is that, as the first word in the name indicates, the condition is progressive and irreversible. There is no cure, no effective drug treatment. Non-drug treatment involves managing each symptom and its effects as they arise.
The average life expectancy after diagnosis is seven years. In the later stages of the disease, a person with PSP may become bedridden because the body is totally rigid and end up being fed through a stomach tube because swallowing has become impossible. Death usually arises from a complication such as choking, a head injury or, most commonly, pneumonia.
So now we knew what Dad had. And we knew the outlook was grim. Outwardly, Mum remained philosophical. "Pretty depressing," she wrote to me after the diagnosis. "But what can one do but plod on trying to make the best of the difficulties?" How she felt deep down she never let on to me.
Increasingly, her letters, with their news of catastrophe and her understated accounts of her reaction to it, tapped into a continent-wide aquifer of guilt within me. Shouldn't I be there helping? Shouldn't I pull up my roots and head for England where I was needed? Wouldn't this be a way of starting to pay back the debt I owed both my parents? Oh yes, I owed them a lot in monetary terms, but even more in emotional terms. Living away from home since the age of twelve, I'd been perhaps too eager to dispense with such luxuries as love and affection as I sprinted towards self-sufficiency. Now it seemed time to make amends, time to pay back the emotional investment they'd made in me, with interest.
My guilt waxed and waned and assumed a variety of forms over the next three years, during which his hastening deterioration began having consequences that reached far beyond the immediate circle of his disease. As well as his frequent falls, there were bladder infections caused by the catheter he'd had fitted. On top of that he'd suffered a mild stroke and had to have a bladder stone removed. Ambulances were frequently parked in the driveway of the family home.
As well as coming to rely on a small army of professional helpers (initially part-time), Mum needed to make changes around the house. She had handrails fitted in strategic spots and, to avoid the stairs and the probability of more falls, she turned his downstairs study into his bedroom.
During those three years, the Australian branch of the family (Sue, myself and by now two children) visited the UK branch twice. On our Christmas 1993-94 visit, Dad's condition disturbed both children so much that on one occasion my daughter, Georgina (then six months old), burst into tears at the sight and sound of him eating a meal.
For most of his days he sat in front of the television in a chair that, by means of an electric motor, could raise him to a standing position when necessary. Communication with him was mostly a one-way process, as I noted on December 30, 1993:
I feel he knows what he wants to say but just can't get it out. He'll mumble something to you, but seeing you don't understand, gives up with a sad shake of his head.
It was impossible not to conclude that, inside the ruined body, much of his mind was still basically sound. Even so, I could feel myself withdrawing from him, not just because I couldn't understand what he was trying to say but also because it was so exhausting to watch him struggling with speech and roaring in frustration. For many – including me on occasion, I'm ashamed to confess – it was easier to assume the slightly impersonal, overbearing, though not necessarily unkind, tones that hospital staff direct at patients: I'm sure he sees this and turns away with sadness and loss of hope.
My shame over my attitude sat like a lead weight inside me during that visit. It turned into a knife thrust just below my ribcage for a moment when he grasped my hand one day while I was sitting with him and kissed it. I really didn't think I deserved that. Later that day he watched a TV documentary about the history of the RAF. At the section on World War II he was so overcome by emotion that he seemed in pain.
The fact that he did sometimes manage to say a few words allowed limited two-way communication for brief moments. It was as though, if he hurried, he could get the words out before the portcullis fell. One day, while taking him for a drive, I asked him if he got bored sitting in front of the television all day.
"Bored! Bored!" he cried, grimacing.
Sue used to sit with him and hold his hand. Once she said to him: "It must be difficult for you."
He said: "I want to die." And he squeezed Sue's hand so hard that he bent the rings on her fingers.
UNTIL WE NEXT VISITED THE UK, MUM'S LETTERS DETAILED DAD'S INLUCTABLE DECLINEfrankly and graphically. Yet when it came to the effect it was having on her and her feelings about it, she continued to dodge the question. But now and then the screen parted. In July 1994, she burst into tears while on the phone to me in Australia. "There's no hope for him. He's just slipping away. It's so sad. He's just a sad old man," she said. An image of the once dashing RAF officer, beaming with confidence, came into my head for a moment.
On September 22, 1996, Mum phoned to warn us that the children might be shocked by Dad's condition during our planned visit in the 1996-97 Christmas holidays.
"Things won't be easy, but it'll all be compensated for by our being together," she said.
Her tears flowed when she told me one of his wartime bomber crew members had recently paid him a visit. I raised the issue of finding a nursing home for him. No, she said, it was best that he stay at home. In a nursing home or a hospital he would be unable to communicate how he felt and would be ignored.
When we arrived that Christmas we could see the end was close. Not just the children were shocked by his appearance.
Dad is worse than I expected: he looks shrunken and shrivelled; he is bent into awkward shapes ... His face is set in an expression of pain mingled with horror most of the time. But occasionally a fleeting semblance of a grin (but only the merest vestige of one) flits across his mouth – when, for instance, I stop to talk to him and hold his hand. Occasionally his eyes close in what looks like resignation, abject prostration before the unbridgeable gulf between his brain and his body.
A succession of live-in carers passed through the house during that holiday period. As always when we were gathered together, most of us – apart from Mum and whichever carer happened to be on duty – went for long walks through the cold countryside, during which inevitably we discussed Dad's plight. We argued about life and the prolonging of it, death and the hastening of it, and we speculated whether he might choose to die now while all his progeny were around him.
All our talk remained inconclusive and speculative. I doubted whether Dad was in a condition to make such a choice. But it was he who settled the matter in the end.
Early in January he contracted flu, which developed into pneumonia. On Friday, January 10, 1997, he was admitted to Royal Surrey Hospital in Guildford, a fifteen minute drive from the house. When I went to see him there the following day, he lay in a noisy, crowded ward with a look of what at first I took to be bewilderment on his face. But after a while I realised it was mingled anger and frustration. He stared into the distance and breathed in short, rapid gasps. I sensed that he knew exactly what was happening to him.
At about 9pm on the Sunday, those of us who were at home received a call from the ward sister to say that Dad had deteriorated. When Mum and I arrived at the hospital, we found him in one of two rooms at the end of a long corridor. That he should have a room to himself in a busy public hospital struck me as odd until I realised the implication. The room was stuffy and smelt of unwashed linen. The ensuite bathroom had bits of cotton wool on the floor. Welcome to the British public health system, as cash-strapped and desperate as ever, I thought.
Dad, we had been told, had had as much done for him as was medically possible. This, I knew, was not true as a bald statement like that. The words "as befits a man of his age and terminal condition" should have been added ... Somewhere a decision had been taken that he should be allowed to die, and I think it was the right decision. Full recovery (to his previous appalling state) was impossible and a life thereafter was unimaginable.
We stayed with him in that smelly room. His eyes were glazed. I sat across the bed from Mum and held Dad's hand. I noticed that his grip had weakened but that the hand was still warm. I felt his pulse. It was irregular: three or four quick beats followed by a gap when he inhaled. In the room, the predominant sound was the hiss of the oxygen tube in his nose. We could hear coughing and groaning somewhere beyond the walls, and nurses talking. Mum had a defiant look on her face, as though she was determined not to crack under pressure. When she stroked Dad's cheek he didn't react.
With his hand in mine, I reviewed his life and my life with him. It was a remarkably lucid moment. I could only conclude that I did not know this man. Granted, the person who lay on that hospital bed had changed so much in recent years that I had to stare hard to find any trace of Wilf Meredith, my father. But I couldn't in all honesty say that I'd really known him even before his illness or that he had ever known me. He was a friendly stranger who had provided me with homes, an education and a great deal of travel. I remembered my discomfort at his touch (a hand on my shoulder or arm) when I was a boy and a teenager. Now I was holding his hand. It was probably the most intimate contact we'd ever had.
Throughout the next day, Dad wavered, clinging to life. Family members and two carers took turns to maintain the vigil. On Tuesday, January 14, I was in the room when a senior nurse came in to check on the drip.
After she'd finished she was fiddling around by his bed when she said: "He's got my thigh!" And he had– he'd grabbed her thigh surreptitiously, perhaps in some kind of automatic action, perhaps intentionally. She pushed his hand away, a little girlishly, skittishly. I said something on the lines of "Dad, you're not still at it!" At which his mouth compressed into the semblance of a grin.
The same faint trace of pleasure appeared on his face when I stroked his eyebrows and remarked that mine were starting to look like his.
By the early hours of Wednesday, January 15, he was breathing fast and his lungs were bubbling loudly. A young nurse came in to tell us (me, Gill and Mum) that his distress could be eased by diamorphine (heroin) but that this would shorten his life. For a moment I sensed that we were treading a thin ethical and moral line here, but Dad's condition was such that none of us had any hesitation in opting for the drug. I didn't think anything more about it.
At one point during the next few hours, Jean found herself alone beside the bed for a moment. She leaned across and whispered to him that now that all who loved him had gathered together to be with him, he should, if he felt ready for it, let go.
Gill and Kathryn, Jean's seventeen-year-old daughter, were at Dad's side when he died at 12.45pm that same day. Mum and I were at home, having taken a brief break from the extended bedside vigil. When the telephone call came, her grief was compounded by her profound regret at not having been beside him at his death. "I'll never forgive myself. I'll regret it to my dying day," she managed to whisper between sobs.
At the hospital, we found the curtains of the room drawn back. The light of a grey day made the room seem colder but cleaner. Everything sparkled. Dad's body did not look rested; rather it looked ravaged and utterly exhausted by a decade of toil. I imagined he'd gone with a great sigh of relief, but Gill and Kathryn said his last breaths had been quiet. After our tears had stopped, I held his hand again while Mum kissed his head, still with its good growth of black hair, and whispered in his ear. Then gradually our words began to flow and our voices became louder.
After the others had left the room, Mum and I packed Dad's things. As we were going out, she lifted the bedclothes at the bottom of the bed and slipped his socks off. "They're rather good thermals," she said as she stuffed them into her handbag.
- Wilfred Meredith was 74 when he died. He donated his brain to science to help in the study of PSP. Joan died on February 8, 2001, four years and 24 days after him. British comedian and musician Dudley Moore and former Queensland premier Sir Joh Bjelke-Petersen had PSP. Moore died of pneumonia in March 2002 aged 66; Sir Joh died in April 2005 aged 94.