Monday 14 October 2019

Charlie Whisker and the Domino effect

Celebrated artist Charlie Whisker was diagnosed with Early-onset Alzheimer's while in his early sixties, a challenge not only for him but also his family, including daughter Domino Whisker, who has returned to Ireland to be with the dad whom she once blamed for everything

Always there: Charlie Whisker who turned 66, with his daughter, Domino. She says: 'I will forever be his daughter and he will be forever my brilliant old dad'. Photo: Gerry Mooney.
Always there: Charlie Whisker who turned 66, with his daughter, Domino. She says: 'I will forever be his daughter and he will be forever my brilliant old dad'. Photo: Gerry Mooney.

The fear of losing my mum and dad haunted my childhood. Lying in bed in the dark, dreams of Rupert the Bear and Sylvanian Families would morph into morbid visions of my parents' demise.

Quietly sneaking into their room each morning, I would check that their bodies were still warm before slipping down stairs to watch dawn reruns 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, who brought me into the world, nurtured me, minded me, watched over me, 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. Apparently, this is a common train of thought for angsty teenage girls with divorced parents and as I got older my relationship with my father became more and 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. I cursed him when Mum made lentil stew - formerly known as Dad's Lentil Surprise. I could and did blame him for anything.

I still question whether my anger was justifiable or not, but I will never forget the pain I felt during those years. Neither of us made an effort. 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 my life in Ireland and moved back to California, where I had 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 had yet another thing to blame Dad for after he decided to move our family back to Ireland at the rough age of 13.

It wasn't surprising that I was greeted with comforting memories of my youth when I arrived back in Santa Monica some 10 years later. Waking up to sunshine every morning 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 and continued to do so - until I got the news.

The day I was told my father had been diagnosed with Early-onset Alzheimer's disease, I reacted in a way that surprised me. 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'.

Sitting on our uncomfortable but reasonably sized double bed at the The Czech Inn, 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. A montage of our vague, distant relationship raced through my head until I felt tears running down my face.

The thought of him losing his memory was scary, but in that moment I realised that I had allowed myself to forget too. I had allowed myself to forget 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, yelling: "Mariad, chop this little piggie up and we'll eat her for dinner!" - which always confused me as we were vegetarians.

My partner and I had spent the previous eight months working ourselves into the ground to save for this trip, this big adventure and here we were, not even half-way through it and all I wanted was to quit and go home.

I felt angry at Dad's diagnosis, perfectly timed to interrupt the most important adventure of my life. 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 had planned on moving to New York City. My boyfriend and I were solid as a rock. I thought this was it, I thought he was my future. 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 he usually did for my friends and boyfriends. Not that he had to try very hard; he always was the coolest dad, dropping me to school in his skater shoes and motorcycle T-shirts, high-fiving my friends.

During those three days, I found it difficult to sleep at night. My mind was frantic with thoughts, sad thoughts, angry thoughts, I was so confused by what my future was going to look like. I woke early one morning and decided I couldn't continue this act any longer.

I made my Dad a cup of tea and brought it to his room. 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, the way we Whiskers do so well, 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 every night, worried about how I was going to incorporate this big, new, tragic thing into my life. Everything that once seemed so solid and in place suddenly jumped and 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 our future and about whether or not I was going to return to America at all.

I couldn't bring myself to leave my 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 in Ireland were tough. I felt alone and vulnerable, unsure if I had made a mistake giving up my life to return to a city that didn't hold great memories for me. Winter came quickly, darkening the days and our moods.

Dad was angry at what was happening to him. He was scared for his future when some mornings he couldn't even make a cup of tea for himself. There were months of frustration and endless worry for everyone, not only about Dad and his future, but about our own lives, and how Alzheimer's was taking over every little bit of all of our brains.

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, a stunning part of the city, but sadly tainted for me by the five treacherous years I spent at school there. Having to be there every day, 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. Letting go of such negativity, as opposed to trying to forget it became my daily modus operandi. I felt free.

My father is an erudite and artistic man. There is a mysterious darkness and depth to him that I have been trying to decipher for as long as I can remember. 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. His comprehension of imagery and spatial relationships was lessening by the day.

This lack of trust in himself and capacity to decipher what was real and what was being altered by his illness resulted in a decline in confidence. Humiliated by his inability to draw with the precision he once had, to concentrate on what he was doing, he gradually stopped creating art altogether and began destroying previous paintings that reminded him of this lost talent. This was heartbreaking to watch.

Throughout the past year, I have 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 complicated and intricate drawings have morphed into organic shapes, with a fluidity that I can only compare to a well-written song. 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 night and nights become day, time means nothing at all. Dad confided in me once 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 of his, that were not only forced on me as a child but featured in a series of his paintings, overnight became loathsome to him. The idea of not being able to trust your senses was so terrifying to me that I started looking for other ways to connect with him. Hugging him more became a simple solution, despite the fact that he was never the huggy type.

Some Alzheimer's patients are never told about their illness, living the final years of their lives confused by what is happening to them as they dip in and out of lucidity. In our case, 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 a sense of relief. An explanation for his forgetfulness and the strange feelings he had been experiencing. Though this relief was short-lived and his future loomed before him.

The reality of it was terrifying. He became withdrawn and distant, angry at his fate and the pain it was going to cause to the people he loved so dearly. With endless talk of death and 'becoming a vegetable', he slowly slipped into an impenetrable depression. Winter was darker than ever. Driving to Killiney each day, I worried about what state I might find him in. He wanted to run away from what was happening to him, from his own mind, his own thoughts and his inevitable destiny. My Dad needed help but so did I. Although I wanted to be there for him every second of the day, I too was struggling both physically and mentally.

Loss of independence comes hand in hand with this diagnosis. Charlie's former partner and I are a two-man team; she and I care for him daily. When his former partner and I can't be there for him, he has carers from Home Instead, much to his chagrin at the beginning. Although difficult for all of us to accept at the time, it gave us time for ourselves and Dad a break from our constant "barging", as he likes to call it. He eventually turned a corner and accepted help with grace. I couldn't have been more inspired as I stood outside the living room eavesdropping one day, as Dad and his new carer got to know one another.

He spoke with such pride as he explained that there really wasn't much wrong with him, that his having care was just to put the bitches' minds at ease. I could picture him rolling his eyes and grinning. For the first time I walked away giggling to my 'bitch' self, relieved.

The few moments I do have to myself I am in constant worry about my father being lonely, frightened or confused. I have had to accept that these are all symptoms of his illness and instead of the physical pain of other diseases, these are inevitable side-effects of this catastrophic disease. It has taken some 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.

There is no cure for this illness. 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.

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