Nobody knows how to say goodbye

The sun was on my face while I sat alone on the couch, I could see my horses grazing just outside and I had this thought…

If your dad has Alzheimer’s disease and he forgot who you are for the first time, should I start to say my goodbyes to him now..? What if I wait and put it off a little longer but I miss the moment he forgets me forever and he never actually ‘hears’ me say goodbye.

Is it even that important to say goodbye… not everyone gets that chance when they lose a loved one. Is it something that just starts to be evident… that they’ve gone and you say goodbye in your own way, with yourself… you accept and eventually let go. Is the goodbye just something that starts to live inside you when they’ve gone. Or is it something I’ll regret if I don’t do…?

I had this thought, then I curled into a ball on the couch as my insides caved in, overwhelmed in tears.

‘Nobody knows’ Lyrics by The Lumineers

Dad in his cowboy stage attire.

 

Alzheimer’s disease is a form of Dementia and with all medical jargon removed, it is basically the slow death of the brain and as one of the most vital organs of our bodies, eventually it will kill you. How exactly? I remember thinking… obviously the brain loses the ability to tell your body how to function. It starts with forgetting events, words and the ability to communicate, drive and problem solve and forgetting your most beloved people and it ends with your brain shrinking so much that there is nothing left to continue to communicate to your body how to move food through your body and eventually it can no longer tell your lungs how to take in air anymore.

This can take a few years or it can progress at a slow, cruel and agonising speed. The complexity of it is that the person with the disease is not as blissfully unaware, as many may think, but increasingly frustrated, confused and depressed at how their functions are further failing them.

To add even more emotion to the salty wound…Have you heard that ‘statistic’ people throw at you in their matter of fact ways…’Did you know that you will have 90% less chance of developing dementia if you play music and create art’

I heard it so many times and like a ripening lemon, the phrase went from being a beautiful happy and comforting one to slowly turn to a festering, rotten and horrid one because my father was a musician and artist his entire life.

The cycle of life has never been more prominent to me now. We are born as helpless babes and those with this disease become helpless once again as their brain rewinds and they unlearn everything they know.

Dad having his first hold of my baby Emmylou

If you know me by now you’ll know I am certainly not afraid to feel the hard stuff in life, but this is a new thing to me, unexplored terrain and I’m learning more every day about vulnerability. There are literally questions I have that I can’t get to come out of my lips cos they just hurt too much.

Often we don’t want to be vulnerable because we feel revealing our rawest self is a risk, a threat to our humanity, but as Breńe Brown perfectly explains in her books, ‘Vulnerability is the birthplace of every emotion we need in our life’. The feelings we have that describe our most treasured moments in life  – joy, love, belonging, empathy, also come from that same raw, vulnerable place as sadness and loss.

Dad taught me how to be vulnerable. How to disrupt the norm by sharing my very real feelings. He would openly tell me he loved me and that he was proud of me, he would show ecstatic joy as he felt it, cry when the sadness took him and he would get up and show the absolute magic he felt when he was on stage singing and playing music.

I remember watching him on stage and feeling so proud that he was my dad. I remember hearing others rave about his artistic skill ‘His paintings look just like a photograph’ and I would fill up with good feelings that I was a part of him. It created a sense of security and belonging in me as a kid and I still feel that today.

Dad with his band – Kimberley Country Band

 

When I was at the end of my art degree, I was working for Greenpeace. I was deep in conversation with an older guy in the main street of Byron Bay, trying to convince him to sign up to save the Great Barrier Reef, when he stopped me mid sentence and said ‘I’m not going to sign up today, but can you please do one thing for me?’ Kinda thrown from being interrupted from my well versed spiel I curiously said ‘Umm okay’… I will never forget his response. He said ‘ Can you tell your father he has done an exceptional job in raising you’ I laughed, embarrassed by how real he made that moment, paused and said ‘He’s a pretty exceptional father’

I didn’t know this guy, he didn’t know me, most likely to never meet again but he made me pack up early that day and go see my dad where we organised our first group art exhibition and we called that show ‘Tell you’re father he’s done an exceptional job’ . Dad was modest with the title but not in his creative skill in the paintings he presented. My paintings were all homage to the creative and vibrant life he always encouraged me to live. We both sold lots of paintings and I even sung while Dad played the steel guitar, at the opening night.

‘A boy named Jethro’ – Holly Willis. Screen print artwork of my dad as part of the ‘Tell you’re father he’s done an exceptional job’ exhibition

 

Learning how to say goodbye to a parent is a lesson I didn’t sign up for. Although I am very grateful it hasn’t happened sooner like others have had to endure, I am grateful that I was able to walk in his footsteps with my own art career and i’m very grateful that I was able to give my dad granddaughters and watch his gentle spirit teach them his fun and insightfully creative ways, still it was thrown at me to start learning this when I wasn’t ready.

I know others who have been on this journey. I felt their sadness and empathised with their loss but I had no idea of how any of it felt. I had no idea the absolute upheaval it would havoc in me. In all of me.

The anticipation that ‘one day’ you’ll lose a parent is sugar coated by the sense it will be a long long time away.

It’s not like anticipating the day you lose your beloved pet, you know that anticipation, where you say in a quiet moment ‘I don’t even think I can handle thinking about that day’ and you truly believe it. Then the day comes, as they always do… and we actually surprise ourselves with how we ride that journey through greif. We cope and in hindsight we were stronger than we ever thought possible of ourselves. Then maybe we even get another pet again and demand our hearts take the risk all over again. I, very much know what that is like, but anticipating that my own dad’s end of life would be like this has been something I’ve been critically allergic to accepting.

When you take the emotion out of it I get it…The cycle of life, it’s a predictable story. All lives end, but it’s evident by how many times I had to edit that line in that last paragraph putting the phrases ‘my dad’ and ‘end of life’ in the same sentence clearly states there is no way to take the emotion outta this. The hardest part is allowing yourself to grieve for someone who is still physically here, but very often not ‘here’ anymore.

My angry self sometimes screams how can a man with the most incredible 77 years of living life to the full, being courageous in his pursuit to live his dreams, being an amazing father, husband and grampie, end up like this, in such a cruel debilitating way. I cry whats the point! but that is exactly the whole point and my grateful self knows if he understood exactly what is happening to him now, i’m sure he’d have no regrets. He would be at peace with his wild ride of a journey.

Grief is like riding your horse across mountains, up and down the peaks and valleys.

The overwhelm and devastation hits you hard. You feel fear, it’s a new struggle to cope with as it rips at your whole body, then you surrender to it… it crumbles your self into sadness, loss, hopelessness and the only thing you can do is let it take you over. Then you feel relief, you stop crying, take a deep breath and you kinda feel ok, even just for a moment until you start the mountainous ride all over again, until time heals your broken heart.

As an old friend said to me recently – accepting that life is full of suffering is part of the solution, losing those we love is just another part of the human experience that we all must endure. If we can gain insight, wisdom and a deeper sense of love from it then that is all we can ever hope for.

I use art and writing to help me through and I’ve started working on a body of work dedicated to my dad. It’s called HEARTWOOD – The heartwood is the central, supporting pillar of the tree. Using the symbolism of tree whorls and how each line is part of a very important journey the tree has taken, shaped by the experiences it has endured.

 

To end this story I will say this. I still don’t know how to say goodbye, but I feel I will know when and if it’s needed with my dad.

I didn’t know that when we took this video of him, below, that it would be the last time I would ever hear him play his famous rendition of ‘The Auctioneer’ but it was, he can’t remember it now, but we will cherish it here forever.

Cherish those you love.

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