Finding the fun in the fog of Alzheimer’s

The best thing about my dad having Alzheimer’s disease was that he couldn’t remember he had cancer.

An engineer who could always fix anything, my dad, Jack Henderson, had started to have a few forgetful moments. I remember him attempting to fix the rearview mirror in the roof of my car and being unable to figure out which direction to turn the screwdriver that was by then upside down.

It was another three years before he was diagnosed with Alzheimer's and, 10 years later, he developed pancreatic cancer. My mum, Edith, was able to care for him at home until five weeks before he died, in April 2016, in St Michael's Hospital in Dún Laoghaire.

My mum and dad were one of those couples who still held hands walking down the street. Married 62 years, they had their disagreements as well as their joys but Alzheimer’s was their biggest test. It seemed to us a cruel blow for an intelligent man who was such a gentleman, but it was these qualities which helped everyone who met him to wonder if he had the disease at all.

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He always remembered his jokes, and enjoyed them, chuckling long after we had moved on to another topic. The choice was to laugh rather than cry in the face of disaster.

I hope that telling my parents’ story through a new play for the Dublin Fringe Festival, showing their daily reality and demonstrating their courage, will help to remove the stigma and to humanise the disease.

Moments of joy

People with Alzheimer’s are not zombies. In later stages they can withdraw, but there is often a key to ignite their focus and help them find moments of joy. My dad was never a singer, but at a birthday party his friend handed him the words of a song and he sang a solo with tuneful panache, surprising us all.

Take Off Your Cornflakes is my testament to him. Although, my former Fair City colleague, Pat Nolan, and I have created characters and a new story in this Show in a Bag production, there's a lot of my dad in there. We hope that anyone who has been touched by this disease (which affects one in four families in Ireland) will recognise the journey of these characters, laugh at shared dilemmas and maybe learn a few ways to find relief.

Trish in the play has to make a choice – to survive or succumb to the pressure. She makes this choice armed only with humour, music and love. I believe humour is the only way to survive if this condition visits you.

We have been laughing a lot in rehearsals, learning to dance with Diane Richardson, trying to talk while dancing (we may abandon that), and Liam Halligan, who directs, nudges us gently to explore new ways of moving and staying true to the story which covers a period of 35 years.

I was rarely with my dad 24 hours a day, and was mostly able to enjoy my time with him. For my mum it was much harder, watching her best buddy steadily disconnect from their well-rehearsed repartee. It’s a lonely place, making decisions for both of them, and carers are largely unsupported by the health services (they managed to get an hour and a half of home help).

Kindness of neighbours

Without the kindness of local people, I don't know how long mum could have kept him at home. The staff of Solo Café in Killiney would keep an eye on him while she did their grocery shopping, refusing to accept his repeated offers of money, and plying him with another coffee if she had not come back. The council even let him off a parking fine once, when he spent three hours searching for his car. How often does that happen!

Neighbours dropped everything when I was onstage in the Tivoli and brought mum to the hospital when he was ill. Their car mechanic, in PK Motors Blackrock, shut up shop, put on a suit, and came to dad's funeral. Please know these kindnesses make a world of difference to a carer.

It was the little things that broke my mum’s heart, like having to buy her own Christmas present from him. Now, since his death, she finds herself surrounded by lovely friends and family – but alone.

To get this story on stage, Pat Nolan and I have had huge support and encouragement from Fishamble, the Irish Theatre Institute and Fringe Fest who run the Show in a Bag initiative to encourage actors to write and produce a new piece of theatre.

I miss my lovely dad. The writing of this play has been cathartic and enlightening, and I hope when people come, they will laugh, they may cry, but they will find more than just a story of Alzheimer’s, they will find a tender story of the true meaning of love.

Take Off Your Cornflakes runs at Bewley's Café Theatre @ Powerscourt from September 12th- 22nd. See fringefest.com