My father died from a heart attack caused by Parkinson’s Disease. This is our story.
When I was a little girl, I couldn’t say the word ‘Dad.’ What came out of my mouth was a cacophony of strange sounds that sounded something like ‘Dla.’ So right up until the day he died, Dla was what he was called.
As some of my readers may know, this blog was born out of his death, which took place a year ago tomorrow. I started this blog because the endless intellectual, wacky and sometimes silly things I would discuss with him had nowhere to go after he was dead. Suffering as he did from Parkinson’s, he spoke very little in the last year in his life because he feared being humiliated by his stuttering, so to have a conversation with him required considerable energy, as well as a person willing to play the role of both participants in the discussion. Strangely enough, my resulting dramatic monologues, and those of my mother, brother and family seemed to make him happy. He would be perfectly content to sit and listen to me prattle on about Game of Thrones or Jane Eyre for two hours, occasionally mumbling ‘Oh, yes,’ or ‘Really?’ if I pressed him for an opinion. He would then completely forget what had been discussed by the end of the day, so one didn’t even need to be particularly original to keep him entertained on a daily basis.
Of course my Dla hadn’t always been that way, and it is evident from the earliest memories I have of him that this was no ordinary man. To begin with, I was the only girl in pre-school who’s father’s hair bore healthy streaks of white (he was 38 when I was born), and my young mind took this as a confirmation of the great wisdom he seemed to possess about everyone and everything. The bookshelves and bookcases in our house groaned with enormous volumes with alluring titles like The Tragedy of the Caesars, Richelieu, The Venetian Empire, The Birth of Europe, The Voyage of Ulysses, Lawrence of Arabia and His World, Art Treasures of the Vatican, Rome Remembered. We seemed to possess the Life and Times of every great artist, composer or politician since the ending of the Greek Dark Ages, and every book in the house contained large, breath-taking photographs of art, foreign countries and architecture that my brother and I got into the habit of browsing years before we were capable of understanding the reams of printed words that accompanied them. Now that I think about it, I still haven’t read the majority of the words in those books. I don’t need to, because Dla provided the words, spinning history and mythology into a great tale that he would reveal to us bit by bit the way other parents tell their kids fairy tales (though we had plenty of fairy tales too). When he wasn’t talking about art and classical music, he was playing them on the TV. He taped every art, history or music programme he could find, and it was quite a normal occurrence to find the whole family in front of the telly, my brother and I equipped with mini plastic chairs and bowls of Nik Naks, watching Lord Clark’s Civilisation or Michael Tilson Thomas conducting Carnival of the Animals (this last one was a particular favourite, as it featured Daffy Duck and Bugs Bunny arguing with each other between the richly-animated movements).
Unfortunately, since most of this taping took place in the late eighties/early nineties, this entire treasure trove is now practically lost, imprisoned in the bulky and eternally fragile medium of VHS that makes us terrified to play any of it, even if we could get our VHS to work. I particularly mourn Peter Ustinov’s monumental six-hour documentary Russia, which Dla religiously taped for me when I was 1, thinking I might like it when I was 16. I loved it when I was 16, and frequently tear my hair out at the difficulty of acquiring it on DVD.
Peter Ustinov, another great man, gone but not forgotten.
Much of this took place during a trying period in his life, but I was so small at the time that I have only the tiniest memories of it, images mostly, of what was going on. Having briefly studied singing in Italy, Dla had been a hugely successful choir master at the high school where he also taught Latin and English (incidentally, my mother, a prodigious pianist, was a pupil of his and returned after university as his greatest rival on the choir scene). This had gone so well that he had eventually given up Latin and English altogether, accepting a position as principal of a local music school, which flourished under his care and attracted brilliant teachers and students, only to be abruptly shut down by government budget cuts. My Dla also being one of these proud and stubborn types who believed that children should never be burdened with their parents’ problems, he never deigned to fully explain this to me. I grew up knowing that he had been a music school principal and that his school had closed. Though I did once hear him tell the short version of this story to an audience after a particularly rousing performance of E lucevan le stelle, describing the school’s closure as ‘a cultural massacre,’ it was only towards the end of his life that I really began to understand the devastating effect it had on him; his fiery bitterness against the treatment of teachers by the education department; his distaste for bureaucrats, and the anger he felt when dealing with idiots of any sort.
It’s at this point that you might be wondering why he was in a position to be rousingly performing E lucevan le stelle to an audience at all. This brings me to the second act of his life as I knew him. Following the closure of his school, Dla elected not to re-enter the school system, but to accept a golden handshake, pay off the house and find some other income. He tried selling insurance for a while, which naturally bored a man like him to tears. He eventually gave that up as well and decided to set up his own studio. Our house was usefully equipped with a former servants’ quarters out in the back garden (oh, the remnants of colonial rule), which was promptly stripped, painted, and decorated with a keyboard and yet another bookcase that wouldn’t fit in the house. He advertised as a singing teacher in the local community newspaper, and, almost overnight it seemed to me (at this point I was between the ages of seven and ten), our driveway was never without a car that did not belong to us, nor our phoneline free of people wanting to speak to him. Endless vocal exercises, scales and studies, together with strains of Verdi, Puccini, Tosti, De Pascale, De Curtis, Mozart, Bizet, Fauré, Poulenc, Franck, De Falla, and occasionally, Bob Dylan, performed in voices and accents of varying excellence, became common background noise in our house. My Mom’s seemingly inexhaustible ability to play any piece at sight (I later learned that she found this ability exhausting rather than inexhaustible) led to frequent requests to go out to the studio and play, the majority of them made at the most inopportune moments (most of Dla’s sense of timing was spent on his music and not on much else). I cannot adequately describe my excitement when it was decided to hold a concert at the local Italian Club, which we had attended regularly since the day I was born (Dla was half Italian). I was so proud of this that when the posters and programmes were printed, I kept one of each stuck to the back of my room door for years afterwards, ‘My Dad’s big concert’ scrawled across the top of both in purple koki, just in case anyone failed to make the connection. Soon afterwards, the concerts were also a regular occurrence, Dla teaching his pupils whatever happened to interest him at a particular moment and then performing the entire repertoire at the concerts. There were concerts devoted to Neapolitan songs, to Francesco Paolo Tosti, to French Art Songs, to Spanish Art Songs, to operatic arias, to light music, followed by pasta and occasionally pizza.
Francesco Paolo Tosti, one of Dla’s many idols.
Eventually, the studio branched out, frequently performing at a certain hotel in the countryside and joining forces with other studios in the area. For a certain very busy period, Dla was elected President of the local Italian cultural society, into which he integrated his concerts and a wealth of other ideas that came to him. He tried to set up a series of talks about Italian literature that unfortunately fell through, but this didn’t stop him from giving a highly amusing presentation on Giovannino Guareschi that I remember to this day.
Naturally, once I hit adolescence (and was consequently irritable and full of shit 24/7), concert-time was a period of high annoyance, each lesson Dla taught ending in him bringing his pupil into the house to practice with Mom on the Yamaha baby grand instead of the Casio keyboard that he used in the studio. I didn’t own a pair of headphones, and would consequently spend these sessions playing Tomb Raider with the volume on maximum or, failing that, with my pillow pressed over my head. Thinking back on it, this behaviour, perfectly normal as it is, saddens me. I’d give anything to go to one of those concerts now.
I was, and perhaps still am, the archetype of the daddy’s girl. Our interests were so similar, and he endlessly devoted himself to amusing me. In other words, to educating me. I would constantly find books on my bedside table that were far too difficult for someone my age to read, but he would scowl if I came home from the library with a book of less difficulty, which he would then deem too advanced for me. As a result of this bizarre situation, and of the great value I placed in his opinion, I only read The Lord of the Rings at 13 (which I could easily have done at 8) and The Name of the Rose when I was 18 (which I could just as easily have done at 15).
A subject of much dispute: ‘Pride and Prejudice’ by Jane Austen.
When my lifelong obsession with Jane Austen started, he would tell me on a regular basis that he had given away his copy of Pride and Prejudice because of the soporific effect its pages had on him, but on the occasion when I somewhat mockingly left my copy of the novel on his bedside table, I later found him wrapped up in it quipping ‘This is very witty, you know.’ Not all of these attempts to get him to read the books I liked were successful, the most famous example being the ten years I spent trying to get him to read The Gormenghast Trilogy, which he did not so much as open until the year before he died. He loved it.
He spent most of my life trying to steer me in the direction of practical pursuits, none of which I displayed the slightest interest in, and during my high school years, he repeatedly tried to persuade me not to go to university. When I eventually did end up at university, his annoyance at my decision to take Classical Civilisation as a third major was indescribable (I shudder to think what his reaction would have been had I chosen to take Latin or Greek). When we had our final showdown about this after fighting about it for two years, he said something to the tune of ‘I don’t want you to study Classical Civ. because I don’t want you to end up like me,’ which it still breaks my heart to remember. I already was like him, and I didn’t want to be different from that. Not to say that he absolutely detested having a daughter studying Classical Civ. He’d provide entertaining alternate theories and stories to the ones we studied in class, which would either get me good marks or a tongue-lashing from the course-coordinator telling me to ‘Never mention Robert Graves again!’ He bequeathed me his own ancient edition of the Oxford Classical Dictionary that my Mom had uncovered in the garage, and played the permanent role of literary references encyclopedia. It was infinitely possible to walk into the lounge and say ‘Dla, I’m looking for such and such a part of The Iliad, but I can’t find it,’ and to receive the desired episode’s exact location in the work, complete with what happened both before and after it, in the space of approximately five seconds. I loved to watch him perform his party trick, which was to name all the Roman emperors in chronological order up until the period just before Rome’s fall, when the Eternal City had a new emperor every two weeks. And right up until my fourth year at university, he insisted on checking my French homework for me, even though by that point, my French was better than his. I didn’t stop him. I really was one of those girls who believed deep down that her Dad was untouchable.
I was away working in France for seven months when I got the news that Dla had PD. In my idiotic innocent mind, drunk on the colours of a foreign land, this did not concern me much. I had heard over the years that Parkinson’s involved a lot of shaking. How bad could that be? I didn’t even Google it until I’d been home for eight or nine months.
Over the phone or on Facebook, Mom would always assure me that when I came home, the change would be apparent to me. It wasn’t. His hair seemed whiter, but not much else. For weeks afterwards, I didn’t notice anything. In my defence, I’ve always been spectacularly unobservant. But after a few weeks, I began to see that his short term memory, usually excellent, was going. He tired easily. A standard 45 minutes’ teaching would exhaust him. By now, we were in the middle of the economic recession, and his studio had shrunk by more than half, music lessons being the first thing that go when times are tough. His knee ached and tremoured constantly. The tremours in his hands would worsen if he was distressed. His hearing was awful. He stuttered when he spoke. And he always wanted sweets.
One of the side-effects of Parkinson’s is a constant desire for sugar. Dla’s delicacies of choice were Jube Jubes, which were kept in a glass jar next to his chair in the lounge. He’d polish off a packet a day. Soon, they were one of the few things in life he still enjoyed. The GP sent him to a neurologist; the neurologist prescribed medication; and each type of medication he tried made him so sleepy that he’d spend half the day lying on his bed. He hated it. I don’t think I need to explain why.
Things would go on like this for a few weeks or months, before getting worse. My mother would notice these declines immediately. It always took me longer. As I said, I wasn’t very observant. He held onto the idea that he would get better; I held onto the idea that he wouldn’t, and that the sooner I accepted it, the better. Each one of his declines had to be pointed out to me. Of course I wasn’t focusing on his declines: I was focusing on keeping him entertained. The Parkinson’s changed his personality. Comedy he would have scorned ten years previously he now found extremely funny. Ten times a day I would think of something or hear something and think ‘I must tell Dla,’ a habit that I still haven’t broken, a year after his death. I’d look for funny scenes from whatever I happened to be obsessively downloading clips of to show to him. I became like a stand-up comedian that was permanently on call, because his life was permanently miserable, in the end. Eventually, when his studio had dwindled to just two pupils, he was persuaded to shut it down, and we moved into the city, both to be close to work, and to be close to hospital. I spent an afternoon in his studio packing up the books he kept there, rows and rows of black Penguin Classics paperbacks; twentieth-century Russian novels; John le Carré; travel fiction about the whole world, from Argentina to China; every damn book Lawrence Durrell ever wrote. It was one of the worst afternoons of my life.
A lifelong obsession: ‘The Alexandria Quartet’ by Lawrence Durrell.
The entire situation was much worse for my mother, who had to watch the man she’d been married to for thirty years, the same man who had once dragged her through the entire Vatican museum twice in one day until her feet were so sore she could only stand on their edges, gradually become incapable of walking by himself. Each step in the process was a battle, because he fought rigorously against everything that would infringe on the independence that he no longer possessed. Eventually, each gladiatorial rung of the ladder of his decline was climbed. He could no longer walk unaided, we got him a walker. He could no longer bath himself, my Mom would bath him in the mornings. He frequently tried to walk without his walker, having allegedly forgotten it despite the huge ‘don’t forget the car!’ sign I had made him. This would inevitably send him rocketing down the corridor like a fighter jet; the Parkinson’s having affected his ability to stand in any stance but leaning forwards. We frequently caught him sneaking about on tiptoes and peering over his shoulder like a naughty child, convinced that we couldn’t possibly have heard the ten minutes of struggling it had taken to get himself off the bed. It became like living in a house with a 5 year old. One afternoon, standing in the queue for graduation gowns with my Mom, I got a call from him that he had fallen. We arrived home to find pools of blood on the kitchen and bathroom floors: he’d gone to the kitchen in search of the sugar bowl, where he’d fallen and cut the back of his head open. The emergency room was an agony despite the efficiency and kindness of the staff, because the Parkinson’s made lying on his side difficult and uncomfortable for him, and no other position was possible if his head was to be stitched up. Eventually, I was reduced to teaching him Elvish and Dothraki while my Mom filled out paperwork, just to get him to shut up about wanting to shifting position. He’d forget about the discomfort for periods of fifteen minutes, before remembering again, and being distracted again. He didn’t come to my graduation, and my mother wouldn’t let me wipe the blood off the floors, determined to the last to spare me the worst.
Parkinson’s Disease symbol.
After his fall, we got him a carer, who promptly allowed him to fall over again because she’d been too busy making herself coffee to hear that he was trying to stand up. The carer was duly replaced, but our trust in the entire institution was broken. He could not be left alone in the house for more than fifteen minutes, and could not bear to be out of it for less than that. My mother and I would take turns going out, because we couldn’t go anywhere together anymore. Getting a phone call at work from either one of my parents was always a heart-stopping moment because it might bring news of another fall, or worse. And all the while, my poor Dla would keep apologising for ‘being a burden,’ not believing us when we told him he was nothing of the sort.
Warning: the next part will disturb sensitive readers.
The day he died, it was my day off, which I traditionally spent with him. In the early stages of his disease, this had meant coffee freezos at the local shopping centre. In the later days, it meant staying at home and getting him to watch a DVD if he was in the mood. We watched a DVD in the morning, Dla ooeing and aahing in all the right places and generally in very good spirits. Every now and then I asked him how his chest felt. The Parkinson’s had made swallowing increasingly difficult and choking alarmingly regular, and he’d been complaining of chest pains for the past two days. He refused to see a doctor about it, as he always did. He had seen both his parents die in hospitals, and consequently cultivated such a horror of hospitals and doctors that only being half-dead would induce him to go to one, and that only after a fight. If only we had known what that day’s chest pains actually meant.
The DVD had to be returned at 2 o’clock, so I left him on the bed with strict instructions not to move until I came back, got into the car, drove to the shop, dropped the DVD off and drove back.
‘Hi, Dla!’ I called as I entered the flat.
There was no reply, but there was nothing unusual about that. He might have been asleep. I walked down the corridor and entered my room to hang up my jacket, noticing as I glanced into his room with the corner of my eye that his position on the bed seemed a little rigid. I hung my jacket up, closed the cupboard door, and went to see. As I was hanging the jacket up, I knew that something was wrong. I knew.
From the door, I saw that Dla was lying stretched out on his back, his face completely grey. His eyes were staring straight ahead of him, and a piece of black stuff that I assumed was bile was poking out from between his teeth. I raced to the bed and checked his throat and wrist for a pulse. Nothing.
I knew that a grey face meant choking from a lack of oxygen, and that without oxygen, there was no way he could still be alive. Part of me still cultivated some hope, though. I’d seen on TV that civilians sometimes can’t tell if a person is actually dead or not. It was this more than anything else that made me call the ambulance number stored on my phone. A voice informed me that the number did not exist. Swearing, I sprinted to the lounge for the telephone directory, which fell open at a page with an ambulance number at its centre.
After arguing with the man on the other end of the line, both as to why he was asking me for directions to our house (didn’t he have a GPS?) and why he was asking for a detailed medical history instead of sending an ambulance, I heard the man tell me he had already sent an ambulance, and that I could help in the meantime by consenting to do CPR on him. The concept revolted me for perhaps a split second (I’d already seen bile in Dla’s mouth) before I agreed. Either way, I was coming out of this situation a screwed up person. Do the CPR, and I’d be screwed up for a while. Not do it, and I’d be screwed up for the rest of my life by wondering again and again whether I could have saved him. No good was going to come of this, but I could choose how long the badness in it lasted.
After the man on the line somewhat idiotically suggested that I move a fully-grown man onto the floor by myself, which achieved nothing but bumping Dla’s head against the bedside table, I started the CPR as the man told me what to do. The first pressure I applied to Dla’s sternum created a choking noise as the saliva in his chest and oesophagus shifted, making me think, for just a second, that he might still be alive. I did the CPR. Saliva and bile bubbled into my mouth, down my throat and onto my chin. I was at it for half an hour. I told the man on the line to hang up, because I didn’t think he could help any more. My mother was adjudicating an eisteddfod three towns away, and her phone was off. One of my hands held the phone to my ear, the other continued to applied pressure to the sternum. I was in automaton mode. And all the while, the ambulance wasn’t arriving. Eventually, enough desperation emerged from the grown-up mode I was hiding in to grasp at one final hope by running down to the supervisor and his wife and asking if we could get Dla into their car and take him to hospital. He came back up to the flat with me while his wife called one of the doctors in the block. The supervisor kindly told me he was gone. Then the ambulance arrived. I went to the bathroom to wash out my mouth.
They tried to revive him with a defibrillator. When I told one of the paramedics that he had been complaining of chest pain, the resulting question – ‘then why isn’t he in hospital?’ – was horrible. I explained. The doctor arrived. Time of death was called. Papers were signed. And I sat in the lounge with the supervisor and his wife, with a corpse in the next room, wondering what the hell I was meant to do now. My Mom was adjudicating, and her phone was off. Should I call a funeral parlour? Did I need medical aid information? Eventually, I phoned my uncle, who lived in the same town Mom was adjudicating in, and asked him to go to the eisteddfod and look for her. He ran out of the house in his socks, and the pouring rain, and drove to the eisteddfod, where he couldn’t find her. They were trapped in traffic on their way to us. By the time they arrived, I was sitting quietly in a chair. Mom asked me if I was okay. ‘I’m fine,’ I shrugged. And in a way, it was true. Because I couldn’t feel a thing.
There was no funeral. He’d frequently said he didn’t want one. None of us particularly wanted to attend one either. But in there being no funeral, I couldn’t speak about him; couldn’t tell people who he was; what he had done and what he had meant.
This is me, telling his story. Ours.