Our mother June was a proud woman who was down-to-earth and genuine yet steeped in tradition as to the “protocols” in life and the personas expected of discreetness and personal privacy to those outside the walls of our home.
June had been a vibrant, radiant and athletically-gifted, decorated private school girl who’d blossomed from a novice to a promising, accomplished Shakespearean actress performing in Melbourne’s renowned theatre district.
She married a good man (our father) who she fell in love with post-World War II and they both worked very hard to make ends meet whilst struggling to afford a good education for their two children, a son and daughter. Our mother and father sacrificed a great deal individually, and jointly, in order to provide us with the best choices in life due to education and therefore opportunity.
In some respects our mother was quite progressive. Even before she was elderly, she would talk of her desires to experience an eventual death whereby “I just go to sleep at some time and never wake up”, or, “I hope by the time I’m an ailing invalid that there’s a pill developed that I can take just to go to sleep and simply drift off forever”. This was a constant with our mother, she knew exactly what she didn’t want at the end of life. Whilst she could never imagine every feasible scenario of what might happen, she knew she didn’t want to end up as a drooling, incapacitated, helpless “shadow of herself” woman who would be pitied by friends and family because of what she’d become or how she looked. She was terrified of her end of life being one of constant pain and would comment that she just “didn’t see the point when there was no further hope” to simply linger. Quite simply, our Mum was pragmatic and wanted to go out on her terms whenever the time was right, if at all possible!
However she knew the laws didn’t allow for such choices and so she would say “I just hope I’m one of the lucky ones that goes in their sleep”. She wasn’t in any hurry to exit life, she was determined to live her life for as long as absolutely possible and to laugh, interact with family and friends, garden and to enjoy watching her favourite tv soapy shows for just as long as possible – and for as long as she felt she could.
But of course, exactly the opposite happened for our beautiful, caring and genuine Mum. A decade before June was diagnosed with a rare, incurable, debilitating yet relatively untreatable, progressive brain disease (PSP = Progressive Supranuclear Palsy), she had written her Will “just in case” to make clear “her intentions” for possible end of life scenarios given the law of the land at the time in the early 2000s. She stipulated her instructions not to ever be on life support, to never have a feeding tube inserted, to not be resuscitated if she was in a state of dying and to defer to her Medical Power of Attorney, her husband for instructions as to her end of life care requests, etc.
At the beginning of a ten year period from diagnosis, our Mum strived and struggled to keep her body upright when all it wanted to do was crash down yet again during a day and hurt her body or hurt her head with the fall, such was the beginning of this disease. After many falls and an eventual broken shoulder which ultimately landed her in hospital due to the other symptoms that she was starting to experience (not being able to read because her eyes wouldn’t “work” properly and provides blinding headaches), this moment heralded the end to the life she’d known in the house she so cherished surrounded by the people she loved and trusted with all of her heart – her family.
Our mother for evermore, needed to be cared for by others, some of whom had never heard of the disease nor had the time to research it – the demands of them in the hospital and nursing home were vast and varied. We understood the system was under pressure and it was a heart-wrenching situation all round.
The progressiveness of this disease can be likened to a cross between motor neurone disease, multiple sclerosis and brain cancer. It’s a debilitating disease of the brain that gradually paralyses the limbs, the torso, the face, the thought channels and the “being” of that person. There can be pain, resistance coming from within the body, brain headaches and confusion, pain with the eyes as they become paralysed and emotional incontinence. Eventually complete paralyses of the eyes ensued (whereby neither eye could be opened and therefore both eyelids remained closed, as if by choice!). This mimicked Mum to be perpetually asleep when really she wasn’t; she became bedridden; eventually there was an inability to feed herself and to even swallow food or liquid when being fed by others (necessitating a feeding tube to be inserted into her stomach if that had been the option taken, with the constant likelihood of infection or replacement required).
Knowing Mum’s written wishes and knowing the tube would prolong the inevitable, the choice was to otherwise risk Mum dying from one of the most common forms of death from this disease… choking. I had witnessed a few close calls of Mum choking and it was terribly distressing to see her face turning blue and sweat pouring from her brow during such episodes. But most of all, the inability of our Mum being able to show expression, was a devastating loss for her!
Having been such an expressive, vibrant and sunny person, this disease rendered her unable to easily express when she was experiencing pain or discomfort, and only those close to her could ‘pick the signs’ she would give out to know when she was experiencing bad pain. Unfortunately I witnessed many times the rough treatment of our Mum from ignorant “contract” personal care workers who either hadn’t read through the notes of the condition of this patient, or didn’t fully grasp that in fact the appearance of her sleeping constantly (with eyelids unable to open) wasn’t indeed the true case that she was asleep, and that she still need to be spoken to as a human being who could in fact, hear them even though it didn’t “look like” she did.
It was heartbreaking to witness our Mum with tears trickling down both sides of her closed eyes when the “care workers” felt she was putting up deliberate resistance whilst they were trying to dress her, when in fact it was her paralysis that prevented her from helping them to dress her. Ultimately they forgot our mother was a still living, feeling, hearing, thinking and alive human being. It wasn’t their fault entirely, but it was heartbreaking for her because by this time, she couldn’t convey anything different to them……and ultimately they didn’t search for clues as to her trapped alertness, they just treated her as a “the broken body”.
Our mother lingered in this dreadful, undignified demise for several years before she blessedly passed.
At times she would be very depressed, and we, her loved ones, could understand why. She was depressed and ashamed of what she’d become and how much she’d lost of herself. When she eventually lost all ability to speak, only the corners of her sweet, soft and caring mouth would indicate the attempt at a smile or a grimace in reaction to some pain. But of course, one needed to be looking to notice it. Otherwise the moment passed…….but we knew because we loved her unconditionally.
Upon our mother’s blessed release and passing from this insidious and cruel disease, as a family we decided to donate our Mum’s brain to research so that more could become known about PSP. It was still regarded as a recently discovered disease (mid-1960’s) and because so much was still unknown about this incurable and untreatable disease (except that the comedian Dudley Moore died of PSP and this did help to raise the profile just a little more).
The neurologist rang me one day with the results of the brain dissection performed on our Mum’s brain. He was the top neurologist in Melbourne researching PSP. I will never forget what he said. Remembering that our mother had looked asleep for every day and every minute for a couple of the past years, paralysed and without expression or movement and on the verge of choking each time a teaspoon of thickened liquid came close to her lips, he said “It’s confirmed that you mother did have PSP. However something quite unexpected and unusual. Let’s just say that 90% of the brains belonging to the general population over the age of 80 years will have (or show) some form of dementia… your mother’s brain showed NONE! We did not expect that.”
If an end of life choice had been available to June given she was inflicted with an incurable, untreatable, terminal and imminent ugly death – she may well have elected, chosen, directed or requested to exercise the option of peacefully ending her life before the inevitable robbed her of that last fraction of independence. Goodness knows she’d done whatever was available at the time to indicate in her Living Will and Health Directive how she didn’t want to die.
I’ve always said that death is a part of life. We learn as we live, we choose as we grow, we work at our lives when we are living. Yet when our imminent death approaches, and palliative care is sadly as distressing as the disease itself, we don’t yet have the ability of that final act of empowerment and desire for dignity and love for ourselves that should be recognised as the true essence a person’s being?
We are all individuals, and we should be afforded the opportunity of options, when death is inevitable… so that as individuals, we can exit the life we each have lived through a lasting and final act of independence, being for the love of ourselves.
Deborah Allcott, February 2019