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Domino Whisker: How I nearly lost then found my dad

Domino Whisker on the changing relationship with her father after he found out in his early 60s that he had dementia

Published 21/10/2015

Coming to terms: Charlie Whisker with his daughter, Domino
Coming to terms: Charlie Whisker with his daughter, Domino
So close: Domino with her dad Charlie Whisker
Labour of love: Charlie in his studio

Growing up as the daughter of acclaimed Bangor artist Charlie Whisker, Domino blamed him for everything that was bad in her life. But when he was diagnosed with Alzheimer's, something remarkable happened.

The fear of losing my mum and dad haunted my childhood. Quietly sneaking into their room each morning, I would check that their bodies were still warm before slipping down stairs to watch dawn re-runs of I Love Lucy with my older sister.

Unsurprisingly, this fascination with death and loss is a gift inherited from my father. His love of the romantic poets Rimbaud, Shelley and Chatterton, was like a soundtrack to my childhood.

The idea of losing my parents was palpable - despite their chastisements, their groundings, their tipsy, locust-like dancing and their horror at my Mohican haircut. This fear became a reality as I entered my teens. After my parents' separation, I felt an enormous sense of loss and abandonment. I reconstructed the reason behind their split into something entirely different from what it was and believed that I was somehow to blame for their unhappiness.

As I got older, my relationship with my father became more estranged. I blamed him for everything. For my not being good at maths, for giving my sister his artistic talents and not me, for my skinny toes and my wonky nose. He would visit me at work in Tower Records and I would convince myself that it was just for a discount on the latest Steve Earle or Bob Dylan collection.

I would visit him in Bray, where he lived with his then partner and new beautiful baby, but I'm sure he thought I was just there to steal his good records and raid his wallet, which, looking back, was usually the case. I had numerous relationships with a wide variety of men and when each didn't work out, I blamed dad.

Eventually, I gave up on life in Ireland and moved back to California, where I'd spent seven idyllic years as a child, thanks to my father's work as an artist and director with Windmill Lane. Having had these blissful years in the Los Angeles heat, I'd yet another thing to blame dad for when he moved our family back to Ireland when I was 13.

In Santa Monica some 10 years later, waking up to sunshine was just what I needed. I began to feel healthier, emotionally and physically. I was content and successful there, both in my career and my personal life. I met someone who made me happy and we quickly moved in together. My confidence soared - until I got the news.

The day I was told my father had been diagnosed with early-onset Alzheimer's disease, we had just arrived in Prague, which was city number 15 of our 38-city trip around the world - what my boyfriend and I called 'Our Big Adventure'. My heart sank to a part of my stomach that immediately made me physically ill. Though I had been expecting bad news, I was speechless.

My grandmother had been diagnosed with Alzheimer's three years previously, so I was familiar with the ins and outs, but that's not where my thoughts went at that moment. I jumped directly to that moment when my father would forget who I am. I imagined that scenario immediately and continued to do so obsessively over the coming days. The thought of him losing his memory was a scary one, but I realised that I had allowed myself to forget, too - how wonderful he had been when I was a kid, before divorce was even a thought.

The places he had brought our family, the magical mysterious stories he had told my sister and me, the way he used to wrap me up in a towel after my bath and carry me into the kitchen where mum was cooking dinner.

My partner and I had spent the previous eight months working to save for this trip, and here we were, not even halfway through it and all I wanted was to quit and go home. I felt angry at the timing of dad's diagnosis. Though he could never qualify for World's Best Dad, and none of my boyfriends have ever much liked him or how dismissive he was of me, for the first time I needed everyone to forget about how much he had hurt me. I needed everyone to understand how broken-hearted I was at the idea of losing him, of never being able to mend the relationship we had lost so long ago. I needed everyone to forgive him for everything.

After finishing our travels, we'd planned on moving to New York City. My boyfriend and I were solid as a rock. Then a big grey fog appeared. We flew to Dublin the day after I got the news and spent three strange days there. Dad, unaware that I knew about his diagnosis, was strong, laughed, joked and played the 'cool' father role. During those three days, I found it difficult to sleep. My mind was frantic with sad thoughts, angry thoughts. I woke early one morning and decided I couldn't continue this act any longer.

I made dad a cup of tea. I lay on the bed beside him and said: "I know." He pretended not to know what I was referring to. I put my hand on his hand and said "I know what's happening to you." He gripped my hand and we lay there, looking at the ceiling, not saying a word. I didn't look at him but I knew he was crying.

We both were. Eventually, we got up and went about our business,  no discussion at all. He just smiled at me, I saw the weight lift from his shoulders. He didn't have to pretend any more.

After a few days, my boyfriend and I continued on our travels, and though I enjoyed it, I felt as though I was travelling alone.

I lay awake, worried about how I was going to incorporate this big, new, tragic thing into my life. Everything that once seemed so solid suddenly danced around before my teary eyes.

Just one day after arriving back in New York to begin our new life, I flew back to Dublin. Alone.

My plan was to stay with dad for three weeks, but three weeks quickly turned into six and six weeks then turned into serious phone calls with my boyfriend about whether or not I was going to return to America at all.

I couldn't bring myself to leave dad, so I didn't. It's been over a year and I am still here. My relationship with my boyfriend ended and for the first time I didn't blame my father. I only had enough love in my heart for one relationship and I needed all of it to rebuild what was left of the one I had in Dublin.

Those first few months back home were tough. I felt alone and vulnerable, unsure. Dad was angry at what was happening to him. He was scared when some mornings he couldn't even make a cup of tea for himself. There were months of frustration and endless worry.

It took me some time but I began to let go of how I had imagined my life at 26 would look like and began taking each day as it came. I found it hard to keep up with the rapid changes that were happening, not just in my life but in my dad's - his memory and his state of mind.

He had moved to an apartment in Killiney, sadly tainted for me by the five treacherous years I spent at school there.

I was constantly reminded of the insecure girl I used to be back then. One day, on a walk with dad and our dog, Mr Blue, he pointed to a girl dressed in my old uniform. "I think I knew someone who wore that ugly thing," he said.

My eyes wet and my throat dry, I did everything in my power not to show him the sadness that swept over me. I could have corrected him, but to do so would have illuminated what was happening to his brain, humiliating him.

Instead, I chose to laugh with him - using it as an opportunity to let go. If he could forget those years, the almost 800 days of my life that I reluctantly wore that uniform, then so could I.

My father is an erudite and artistic man. His paintings and his poetry, littered with sweet and sour images (his words), encourage people to get involved with them - to try to piece together the curious puzzle he has laid out.

A born storyteller, he was beginning to struggle with recalling words, never mind putting them into poetry.

Humiliated by his inability to draw with the precision he once had, he gradually stopped creating art altogether and began destroying previous paintings that reminded him of this lost talent. This was heartbreaking.

Throughout the past year, I've been trying to help him rebuild that part of himself. Trying to look at things in a different light and use Alzheimer's disease as a platform to venture into a new style of work.

His once beautifully intricate drawings have morphed into organic shapes. Though shocked at first by what was coming off the tip of the pencil, he now incorporates these shapes and configurations with words and thoughts he is having in that moment.

Equally, as poetic as his work once was, it is now even more cryptic, as well as an exquisite example of the complexity of this disease.

Simply speaking, Alzheimer's is caused by abnormal deposits of protein throughout the brain. Things that once came naturally are lost forever. Seeing is different, hearing is different, taste is different and, most distressing of all, faces slowly become less and less familiar.

Days become nights and nights become days, time means nothing at all. Dad confided that he didn't know if he could trust any of his senses.

He told me that my face sometimes appeared blue to him, sometimes green. Background noises became intolerable, coffee machines in cafes he found deafening. Heinz beans, a favourite snack, became loathsome to him.

Some Alzheimer's patients are never told about their illness, living the final years of their lives confused by what is happening to them. With dad being so young, it was crucial that he was given the diagnosis and, even though it caused him much mental distress, it also gave him relief. An explanation for his forgetfulness and the strange feelings he had been experiencing.

The reality of the future was terrifying. He became withdrawn, distant and angry at his fate and the pain it was going to cause to the people he loved so dearly. He slowly slipped into an impenetrable depression. Driving to visit him each day, I worried about what state I might find him in.

Charlie's former partner and I are a two-man team; she and I care for him daily. When we can't be there for him, he has carers. Although difficult for us to accept at the time, it gave us time for ourselves and dad a break from our constant "barging", as he calls it. He eventually turned a corner and accepted help with grace.

The few moments I do have to myself, I am in constant worry about my father being lonely, frightened or confused. I've had to accept that these are all symptoms of his illness. It has taken time, but I have finally accepted the challenge of role reversal. When I wake him up in the morning, I wonder who it is that he sees. His daughter? A girl? Or just another carer? I try my best to think it might be a fusion of all three.

I remind myself every day that, even when all his memory of me has faded, I will forever be his daughter and he will forever be my brilliant old dad.

Everyone with a brain is at risk of developing Alzheimer's disease and there is no cure. It cannot be slowed or prevented. It steals memories, personalities and lives. I am aware that there are people who love me and fear that I am putting my life on hold, wasting precious years of my youth, but I don't look at it this way.

Alzheimer's leaves me with no choice but to capture and enjoy every moment that I can with my dad, and I know this is a part of my life that I will never regret or forget.

Painter of star quality

From the start of his career, Charlie Whisker has been known for both his talent and his ability to capture the zeitgeist. His paintings hang in the homes of Bono and film directors John Boorman and Steven Soderbergh. While working in Windmill Lane in Santa Monica in the 1990s, he made music videos for U2, Bruce Springsteen and Bob Dylan.

His work won him international awards, including a Grammy nomination for a video with Bob Dylan.

He was born in Bangor, Co Down, on October 18, 1949, and had an idyllic childhood until the Troubles came. Witnessing the violence first-hand had a major influence on his work.

Whisker graduated from Belfast College of Art and spent time teaching painting at the National College of Art and Design in Dublin between 1981 and 1987. He quit teaching because he wanted to use his energy for painting.

His work is in the collections of the Arts Council, Allied Irish Banks and the Ulster Museum.

Belfast Telegraph

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