The ugly cousin’s visit - Page 3
From Griffith REVIEW Edition 10: Family Politics
© Copyright Griffith University & the author.
Written by Peter Meredith
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 DECLINE frankly 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. ♦
- Normal 0 false false false MicrosoftInternetExplorer4 /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0cm 5.4pt 0cm 5.4pt; mso-para-margin:0cm; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} 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.