My Dad and Dementia: Love, perseverance and tiny miracles 

When I was small, one of the most exciting events of the year was going to the Fleadh Cheoil with my dad, Séamus. Thousands of people thronged the streets in Buncrana or Listowel or Kilkenny during those golden, halcyon days of traditional music, and most of them seemed to know him.

It would take an age to pass down through the crowds –  as he rushed from organising Scoil Éigse, to checking competitions, and dealing with the other myriad of tasks that made up hosting the Fleadh – because he was hailed from all corners, and he made time for everyone.

As a ten year-old, you wanted him to hurry along because you had been promised chips and Club orange, but even at that age the excitement was infectious. “Hanam a diabhal” he’d exclaim, all smiles, as yet another friend and musical companion crossed his path or came to greet him in the crowd.

We were used to the happy giddiness of it all, and to the impromptu singing sessions on the street inevitably attracting a crowd and causing further greetings and delays. Usually we’d get slipped 50p by more than one of his cheerful friends, and we’d buy ice-cream along with the chips, so we didn’t really mind.

There wasn’t a traditional or seannós song my father didn’t know. He had a remarkably prodigious memory. It was as if on the first hearing of a song he soaked up and absorbed not just every line, but every nuance, ornamentation, and flourish, of what were often complex and difficult lyrical phrases.

Songs of great loss or of sorrow or defiance. Songs of national pride, or songs which, to paraphrase Kavanagh, made the Iliad of a local battle. The magnificent songs of our rich heritage. Sliabh na mBan. Tomás Bán. Róisín Dubh. The Boys of Barr na Sráide. They were the ones he loved to sing the most, and he sang them from the heart, profound and powerful.

But he enjoyed the lively ones too. My pup came home from Claedeach he’d sing with muintir Chúil Aodha. Or Cailleach an Airgid with the Conamaras. Or Mo Ghile Méar with everyone because he was known throughout the country for the distinctive passion and strength he brought to that one.

He performed it once with the James Last Orchestra and musicians from Comhaltas on an open air stage before a jammed College Green.  There was no warming of the vocal pipes in it: starting on a dominant 7th he launched into an explosive roller coaster performance which gathered and gathered with each layer of orchestration. By the last chorus, with the trumpets joining for a mighty climax, it was pulsing a hair-raising, joyous energy.

 

It was “wonderful”, as James Last said. The crowd went wild.

Dad famously sang every song with his entire body: his shoulders moving, hands outstretched, feet sometimes breaking into a battering dance. There was heart and soul in every rendition. In this joyful delivery of Scoil Bharr D’Inse with his old friends Johnny Lehane and Éoiní Mhaidhcí Ó Súilleabháin, the feet clatter out the rising tempo as the entire room joins in. It makes you wish you were there.

People loved to watch him sing, because the whole performance was imbued with his love of the songs – and his deep knowledge of and enthusiasm for the glorious, rich Gaelic culture that he worked so hard, and so successfully, to conserve and promote and cherish.

They loved him too. “He’s some man, your Dad,” they’d say. “And he can set a room on fire.” He loved traditional music with an exuberance that was both compelling and inspiring, and it delighted him when others came to feel the same. He lit up our music, illuminated it with his passion. And he made it a joyful celebration.

My father always had a merry soul. He still does.

He also has very blue eyes, lively like his temperament, and when he laughed especially hard – which was often – sometimes they would dazzle, bringing an intensity and shine to their colour as if they had been lit up from behind. It fascinated us as children. We delighted in seeing it.

Sometimes they would dazzle at the delight at meeting old kindred friends. He famously wrote that when he first met Geordie Hanna, they sang for “four days and four nights in the Atlantic Bar”, along with Paddy Tunney and a whole tribe of singers.  When Darach Ó Catháin stayed with us, they’d stay up all night exulting in the uniquely beautiful sound of seannós, the sounds of Caisléan Uí Néill drifting up the stairs as we slept.

That was the thing: he didn’t just know the Conamara songs, or the songs from the Déise, or Múscraí, or the Lough shore. He knew them all.

His great friend, the fiddler Antóin Mac Gabhann, spoke about Dad’s remarkable memory, and his impressive knowledge of all things musical, at a ceremony where he received an award from Comhaltas at the Fleadh in Sligo one year.

“Séamus always reminded me of the Village School Master in Goldsmith’s poem” he said:  “And the more we gazed, the more our wonder grew. That one small head could hold all that he knew.”

When Dad’s memory started to falter, then, it was an immediate cause for worry. A man who knew even the forgotten verses to the barely-remembered songs was not someone who would forget a name of an old friend – and then increasing amounts of names, and then descriptive words. The man who had hosted a thousand concerts, and delivered a thousand lectures on traditional music, was suddenly finding himself lost in the middle of a sentence. He knew something wasn’t right.

I told myself it was just the forgetfulness of old age starting to creep up on him, but my mother, whose instincts were honed from years of nursing, which included hospice care, knew better.

So we did what everyone does when dementia first creeps in. We attended the clinics and spoke to the specialists and faithfully took the medication, and hoped and prayed. But dementia is relentless. It reminds me often of the sea: silent and remorseless and inexorable, wearing even the most resilient minds down.

The changes started to accelerate, and then his confusion grew. Things began to shift faster in the wrong direction.

Then the long arm of Covid reached out last winter. He became sick and fevered and his breath was laboured. We couldn’t get a doctor to come to the house – they insisted that the best thing to do was to call an ambulance and bring him to hospital. In hindsight, given that we were later told the virus had never really got to his lungs, it might have been better to keep him at home. But what use is the wisdom of hindsight? All it does is sharpen your regret.

In the ambulance, I held his hand and then walked with him in the wheelchair into the A&E amongst the noise and chatter. I was told I could only stay a minute, but he didn’t want me to go. I had to unlink our fingers and leave him there in the hospital. I didn’t get to hold his hand again for seven long, terrible, distressing weeks.

We’d call on Whats App everyday but he didn’t look good. He didn’t know where he was and was anxious and confused. Eventually, they let me in to see him. He had stopped eating solids, I was told, and lost his mobility.

The doctor didn’t hold out much hope. This was a new baseline, she said, he wouldn’t be able to chew, or do much else. It wasn’t due to Covid, she explained, it was that this was how vascular dementia progressed, with sudden and irreversible deteriorations,

She strongly intimated he’d be better off in a nursing home. His care needs were very high, she said.

“He was mobile and eating fine when he came in,” I tried to say, but my words were strangled by the enormous lump in my throat. It wasn’t as if anyone was to blame anyway. Truth is, his mobility had been getting steadily worse over the winter. We didn’t want to see what was coming I suppose.

I left the hospital and sat in the car and cried like a child. Everything seemed hopeless and hemmed-in and awful. In the end, I made a bargain with God that if we got him home and did everything we could to improve the situation, we’d appreciate it if He would oblige us by moving in mysterious ways.

Next week, Dad came home to us, despite all the misgivings, but with the support of the lovely community nurse and carers and occupational therapists and others. They couldn’t have been more kind.

We stood in the garden to welcome him, and as the ambulance door lowered his eyes lit up over the mask. God, it was good to hold him and hug him, and tell him we loved him. He gripped Mam’s hand tight and wouldn’t let go, as if he was afraid he might be taken away again.

But we worried too: at how frail he seemed, at his loss of mobility, his thinness. The bones were sticking out from his back. In those first few days it seemed that he might just slip away from us. But he didn’t. He was never a man to leave a good session early.

And the doctor was wrong. Or the prayers worked. The second day he was home, he reached out and picked up a ginger biscuit – the lovely ones from Super Valu, his favourites – and ate it. Now, some of the days he’s enjoying steak and potatoes with pepper sauce. And sponge cake with raspberries – and especially home-made apple tart. And porridge with lashings of cream in the morning. No pureed food for this West Clare man yet.

Maybe love and perseverance can work tiny miracles. Enough of a miracle anyway to recover his strength so we can keep him home where he is happy and loved, and where he can be himself – with family and familiarity, sitting by the fire, or with the sun on his face in the garden. Home where he can have cake and laughter and music and lots of songs.

Where we can bring him for a walk, with the dog running by the chair and a child holding his hand. Where the grandchildren can gather in gangs and play the tunes he likes best. Where we can put the new baby into the bed next to him so that they can admire each other, each at that stage of life where they are most vulnerable and most in need of our care.

He’s home where Raidió na Gaeltachta is always on, and where we can pick one of thousands of CDs or books to read or play for him, all inscribed with notes to Séamus: with thanks, or appreciation, or admiration. He was always the musician’s friend, the champion of traditional singers, a keeper of the sacred flame. I’ve lost track of how many people told me that his boundless encouragement and persuasion meant they stayed at the music, or discovered the fullness of their own abilities, or overcame their shyness as performers.

His friends send videos on What’s App saying hello and sending a tune or telling stories from their madcap times. We’ll never be able to thank them enough for their kindness. Their affection shines out from the small screen. It’s lovely to see, and to see his reaction, all smiles. His family come down from Clare, and my mother’s up from Cork, decency personified, with fresh veg from their gardens and tales of old times.

In the time before Covid, his old friend, the mighty flute player Mick O’Connor, curated a tribute for Dad at the Scoil Samhraidh Willie Clancy. The place was thronged. The renowned musician and producer, Tony McMahon, who we sadly lost last month, had a special message for him: “Séamus,” he said. “You have a heart as big as County Clare.”

Dad is still that person. He claps encouragingly when the children play a tune for him, and laughs when a baby kicks and smiles. He’s still my wonderful Dad, changed utterly but still the same. The essence of what he always was is with us still.

There’s a fear of dementia that makes us afraid of what it will bring, not just for the person afflicted but for everyone.  People shake their heads in sympathy. “It’s terrible,” they say. “The person’s gone.”

In my experience, that’s not true. My Dad is not gone. He still has sparkly blue eyes and a smile that would light the room. He is still absolutely mad for music. He still joins in when we sing the songs he loves most, or when his memory sparks into life, like it did last month and he suddenly knew again all the words to Máirín De Barra. Or when my brother and sister sang Kelly from Killanne for him, with splendid harmonies, the way Dad did a hundred times with Breandán Ó Dúill, we thought he’d rise up right out of the chair and stand up in the room.

Sometimes when a funny story is being told around the table he catches the mood and laughs until he’s doubled over, just as he always used to, though he hasn’t the same energy and what he has is fading fast.

I listened some time ago to Dr Des O’Neill, a geriatrician, who explained that in many ways that dementia is a limitation of language and memory, and that the person remains, even if we need to find a new way to navigate our communication and our care.

I know that things will deteriorate further.  But we’ll manage that when it comes.

One evening coming home, I said to my daughter that I felt people might not understand his life still has meaning, that I’m still as proud of him as I ever was. “He gives us meaning too Mam,” she replied. “He shows us what’s most important.”

It reminded me of what Hopkins wrote in Felix Randal: “This seeing the sick endears them to us, us too it endears.”

“Us too it endears”. That’s true. My mother’s infinite patience, the gentleness and love she shows him every day, despite her own troubles and being almost blind. Sometimes she sits for hours holding his hand. We always called her the baby whisperer because there wasn’t an upset child she couldn’t soothe. Now she does the same for Dad.

There are, obviously, stretches that are deeply upsetting, especially when anxiety overtakes him and he seems bewildered and upset and he doesn’t know who we are. Some days are very tough, and there are moments when the sadness creeps up your throat and almost chokes you.

Those are the times your heart feels splintered at the unfairness and the cruelty of it: at the trick that life has played on this splendid, gifted, musical man who is, increasingly, reduced to being like a helpless child.

People tell me that dementia is the long goodbye, and that at least the parting leaves nothing unsaid. That long goodbye, however, has a persistent undercurrent – the sharp fear of loss. I know that’s unreasonable. We all lose our parents. It is an ordinary, expected event. Many would say that Dad has lived a long, full and happy life and to remember that when his time comes. I know all these things to be true. But I also know that the thought of losing him makes me feel like a child again. I fear that loss, that rupture.

But that’s ok. It’s part of the journey, and it passes.

One evening, he was anxious and unhappy and it took hours of coaxing and singing and grandkids playing music and holding his hand before he relaxed. “It’s me, Dad. Niamh atá ann,” I said, for what felt like the hundredth time. “I know,” he suddenly replied, surprised I’d be introducing myself to my own father, and he kissed my cheek.

Then he laughed along with all of us at the sheer joy of it – at our delight in his sudden coming back to us. And his eyes shone and became very blue.

Those moments feel like tiny miracles, as fleet as shooting stars but no less bright.

Those are the moments you hold in your heart, with the memories that we share sitting around his bed: of all eleven of us piled in the van set for adventure, often with a few neighbours and a scatter of dogs for good measure. He’d play the tin whistle and drive the van with his elbows. The hitchhikers we’d pick up would nearly have a stroke at the sight of it. RTÉ once caught a shot of him playing tunes while elbow-driving around College Green. They used to run it before the news in the 70s, I’m told.

Sometimes on those journeys after the songs were sung, we’d talk about history and the best books, from Pearse to Ó Caidhin, to Wodehouse and Solzhenitsyn. Some days, I still read them to him. Often it stirs a memory. His smile then is one of remembrance and the happiness that brings.

One night, in the time before the bad turn, my daughter and I stayed over, and we sat as the dark dropped slow and he and Mam sang one beautiful seannós song after another. In fifty years of marriage they sang together very often. It was always glorious.

‘Bean Dubh A Ghleanna’. ‘Cath Céim an Fhia’. ‘Máirín de Barra’.

“Do thugas is thugas, is thugas om’ chroí gean duit”.

“I gave to you and gave to you, and gave from my heart true love to you”.

“Go hálainn,” he’d tell her. “Tá tú iontach”. Beautiful singing. You are wonderful. (She is, her magnificent voice hasn’t aged at all, it is astonishing.)

“Mo stóirín.” The love of my heart.

And sometimes he’d remember, and remind her where she learned it.

“An Caiseadach Bán. Ó Sheán ‘Ac Donnacha.” Fair Cassidy. From Seán Mac Donnacha. One of the very best. Or the Conamara version of Róisín Dubh. Extraordinarily beautiful. Ó Sheán Jeaic i gCarna.  They visited him on their honeymoon, along with Tomás Mac Eoin and Máire Ní Dhonnacha.

And she said: “Do you remember learning this one from Nicolás Tóibín? An Bhuatais. And from his brother, Pádraig. They were lovely people.”

Old memories. Strong bonds.

Maybe the things that drew you together also give you the most happiness near the end.  Maybe that’s the reward for a lifetime together.

Love and perseverance and tiny miracles. We’ll hold onto that, and onto him, for as long as we can. Until God calls him.

Mo ghra go deo thú, a Dhaid. Love you forever Dad. Dementia won’t change that.

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