Forget me not

“Katie-belle, if I ever end up like that I want you to promise you will shoot me.” Dad shook his head sadly at the television as the news reporter spoke, the documentary on Dementia was sad and confronting. “Yes, I promise” I replied meaning every word, I understood exactly how he felt. I was around eleven, I had just read “Flowers for Algenon” and my grandmother had recently passed away after years spent in the slow, cruel decline of Alzheimers Disease.

Grandma, Mum’s mum had lived in Mum’s native England. I’d only met her once when we went over to visit when I was six years old. I didn’t remember her very well, she lived in a tiny room in an aged care home didn’t know who I was and kept calling me by my cousin’s name. She was unable to have much of a conversation and only just sometimes recognised my mother, all of her memories confined to a place in her past that we were not privy to. 

I do remember that she smiled a lot though, she was physically fairly healthy and seemed quite happy existing within her own little world.  I had nothing to compare her with, I had never known her before she had become unwell but for my Mum, it was painfully obvious that while she was still physically present, the mother she had known was long gone. 

Over the years I have watched more grandparents of friends suffer the undignified loss of their minds and friends that work in aged care have shared heartbreaking stories. The memory lapses from disassociation and medication side effects that affect me have at times sent chills through my spine when I remember the fact that Alzheimers has a genetic link. “I don’t want to ever be that person, just shoot me” I say to my husband, mimicking my father’s words from all those years ago.

Now my Mum has to watch her life change as day by day the man she loves more than anything in the world is slowly taken away from her. Dad’s memory has been deteriorating for a long time now, a medical scientist by trade and plant enthusiast, he used to know the Latin and common names for everything. I remember having a conversation with my sister when I was in hospital nearly two years ago about how he was struggling with word finding and repeating himself a lot. She and my brother live interstate and don’t get to see him very often.

Dad and me at an open garden a few years ago

Over the last few months he has been steadily and more obviously declining. Mum and I were able to convince him to see a different doctor as when he had mentioned our concerns to his regular GP more than 12 months ago he had just been told it was “a normal part of aging’ and didn’t do any tests or anything. 

Mum went with him to the new doctor, and this doctor listened to the concerns and agreed with them, she administered some basic neurological tests and cognitive tests and then referred him on to a Geriatrician who in turn did more tests and ordered CT scans. 

We were still waiting for the follow up appointment for these tests but over the weekend he had a funny turn and woke up feeling quite out of sorts he asked Mum to take him to Emergency where he was given fluids for dehydration and officially diagnosed with dementia.

My mum was given a speech by a doctor with the people skills of Monty Burns about how this was basically the beginning of the end. His rate of decline would likely increase from now, he would no longer make new memories and would slowly move into a world from the past. Everything in the home would need to stay the same for familiarity except for the fortune she will have to spend on safety features in bathrooms etc.

She could no longer leave him by himself, she would have to take over the administration of all his medications and to revise their will and have new documents drawn up, one to give her power of attorney and another for a secondary power of attorney should something happen to her.  

Mum knows all too well the long painful road ahead but the truth is at the moment he is not too bad, he has always been a creature of habit and I think his routines help keep him on track. He still needs and craves his independence and loves to travel on the bus to familiar places. I think he should be able to have that while it is still safe for him to do so. I know how awful it feels to be watched like a hawk and have your decision making skills judged even when you are capable and I don’t wish that feeling on him. 

So Dad, I’m sorry that I can’t shoot you – not even when it gets bad one day. But know that we want to be there to help you, like you always have been for us. Right now we still have opportunities to spend quality time with you and create memories, at least for ourselves if not for you.

I am going to force you to be in more photographs even though you hate it and I will make more trips in to town on weekends so that the children can spend more time with you. I know you are frustrated that you have trouble remembering their names, but they understand, we all do and names aren’t that important anyway, the important thing is we are together. They know you love them, and we love you.

Once upon a time

Time. They say it heals all wounds and they say it flies, yet wounds will continue to heal so very slowly as life flashes past with lightning speed. Another year has passed, yet another year that I thought I would never experience but I blinked and there it went. And I am still here.

I am still here to stare meaninglessly out my study window wondering what I would have missed if I had of successfully ended my life back in 2015. What would be different now, would my family still be living in our rusty old farm house overlooking a flooded dam surrounded by gum trees and squawking sulphur crested cockatoos? Or would my death have seen them move back into the city, closer to schools and support networks surrounded by busyness and distractions to keep them from wondering what could have been.

The reality of the last 18 months is nothing eventful has happened, no major events. Nothing much has happened that I would have missed out on if I was not here. I still haven’t been able to honestly utter the words “I am glad I am alive to see that”. There have been many things that were enjoyable, fun even but nothing I feel I couldn’t have lived without. 

My biggest accomplishment over that time has been writing my memoir, which will probably remain unpublished and yet gave me an inner strength I never knew I had. My story has been told, and if it is read one day that will be a bonus. 

Rain is trickling down my window and I glance at the photos I have pegged to string running the length of my tiny study wall. Photos of happy times, of weddings and Christmas’s and babies and pets. Pictures depicting fun and laughter, hope and promise – moments captured in time that remind me there are good days too.

Photos are so often dishonest portraits of a life lived, posed for and propped. After all we seldom photograph the bad times, who wants to re live the sorrow or the fear? These darker times are left to fade in our memories, some experiences fading faster than others.

I become very photo happy when I am manic, evidenced by my hard drives full of images of trees, rocks and tiny mushrooms. I try to endlessly capture the intense beauty seeping from the sheer complexity of everything around me in hope I will revisit these images with the same enthusiasm when the world around me once more fades to shades of grey.  

My children had their last day of school for the year today, they will return in February as grade 3, 6,8 and 9 students. They have grown so fast. I look up at my photo wall and I am drawn to an image of me aged 17 holding my newborn son, I look so young – I suppose I was. I had already experienced so much ‘growing up’ at that age that becoming a ‘teenage mother’ was just another inevitable step in my path of manic consequence. 

 I remember looking at him feeling this overwhelming sense of responsibility. I was responsible for the well-being of a real live all be it tiny human, it wasn’t a goldfish – there were serious consequences if I forgot to feed it or clean it or heaven forbid accidently kill it. This was real. Judgements flew around me, many from total strangers “babies having babies!” disgusted looks and shaking heads. 

Depression followed naturally, but it was no stranger to me so I got through it again, time passed, highs flew, lows lingered, marriage, babies, illness, experiences filtered through the in betweens, all these compartments bonding together and creating a wholeness, a story, my story.

Like it or not our stories are made up of time, how much ‘life’ we fit into the time we have, the manic desire for more and the depressives desire for less. 

But the hands of the clock will continue to move with every minute long after our time has passed, we can just hope that as those hands tick forward our stories will be told by others as memories and lessons, passed on through the generations of that fleeting moment we spent here, once upon a time.