We don’t talk about people dying. Maybe we should.
“Do not go gentle into that good night. Rage, rage against the dying of the light.” (Dylan Thomas)
“And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.”
(‘Do not go gentle into that good night’, a poem by Dylan Thomas)
As they get older, our clients face an array of issues and problems relating to the finances underpinning health care and aged care for them and their loved ones. At Quantum Financial we are honoured and consider it a privilege that our wonderful clients trust us to help guide them through difficult periods of great distress.
“Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.” (Dylan Thomas)
One such life event is the shocking and sad day in your life when you are told that a loved one has a terminal illness. Hope turns to hopelessness; a focus on recovery is replaced by despair and distress.
Everything you know about the health care system is abruptly replaced by a new and completely unfamiliar palliative care system. The search for cures and answers is replaced by a crash course in pills, potions and syringes for pain management. The illegal opioid drugs you long believed were bad now become an everyday part of your routine as they pile up on the dresser.
An army of wonderfully well-intentioned palliative care doctors, nurses and carers appear at your door asking ‘How can we help you’. And like London buses, they all turn up at the same time in a busy queue adding to the sense of confusion. You don’t know who everyone is and how they fit together and your first response is a bewildered ‘I don’t know what you do, I don’t know what help I need. You tell me what I need’.
All of a sudden there aren’t any black or white clear answers to what the medical professionals ask you; you’re just faced with a series of grey, least worst options. Everything is turned on its head as you go from deferring and following the decisions of medical professionals to being asked to make important decisions for you or your loved one. Should they stay at home or go into a hospice? Is longevity or quality of life more important to you? I mean, how do you answer these questions at the best of times when you’re not emotional and involved, let alone when you are caught in the middle of it? And how do you choose between quality of life and longevity for someone you love? I want both. Why can’t we have both? None of this seems fair.
“Old age should burn and rave at close of day” (Dylan Thomas)
For those caring for a terminally ill loved one, of course they still want to help them and somehow make it all better. You implore them to keep up their fluids, to keep eating. The funny thing is as the human body comes to the end of its life it knows exactly what to do and it’s the opposite of that. It enters its shut down phase and while you want them to rage and rave, they don’t.
They sleep. They sleep a lot. They simply just don’t burn and rave. Their breathing patterns change and become irregular. They don’t want to drink or eat. Their speech becomes slow, then hesitant and finally difficult to understand. They mix moments of lucidity with smiles and comments that make no apparent sense. They want to hold your hand, but not all the time.
They lose mobility quickly. Just when you think you’re on top of one stage and you’ve mastered how to manage it, everything changes and gets so much harder. So you start the process again.
They can go from a walking stick to a walking chair to a wheel chair to bed ridden in just weeks or days. You’re faced with the dilemma of keeping them at home (which most people want to do as long as possible) or a palliative care hospital (where you know they will have full time care). Your decision will be based on facilities in your home – is the bathroom safe (eg railing to hold, ledges to step over); can a wheel chair fit through door-ways; can a hospital bed fit in the bedroom; can your spouse physically lifet/support you, etc, etc.
It’s not pretty, you lose all sense of personal dignity. You struggle washing yourself and going to the toilet. Then you can’t do either at all. You’ve lived your entire life independently and taking care of yourself and now you can’t do anything. You can’t even move yourself in your own bed. You are completely dependent on others and you just don’t want to be.
Apparently hearing is the last sense to stop functioning and it is really important for loved ones to know this. It means that even though you may think they can’t hear you, they probably can. So nice music and loving, caring words from family are incredibly important, right up to the end.
The palliative care professionals also start asking you tough questions that you really don’t want to answer. It’s quite confronting to be asked where do you want a loved one to die while they are still alive. In their bed or in a palliative care hospital? Do you want them to be buried or cremated? Who will sign the death certificate? ‘Hang on!’ you want to scream out, ‘They haven’t died yet!’. But the reality is they will, and soon.
So you start taking steps you don’t want to take because you know it is the right thing to do. They can’t do it so you have to do it for them. You sit in your car alone in tears and call the funeral parlour and ask what do I have to do when the time comes? Who do I call when they pass? What will it cost?
When someone is diagnosed with a terminal illness you shift from a process based on hope and cures to a well-worn path with one inevitable ending. The best thing to do is to follow the advice of the palliative professionals, you may have no idea of what’s what but they know exactly what they are doing.
“And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.” (Dylan Thomas)
In our case it is my father Bill who was diagnosed with terminal cancer. He born in the depths of the Great Depression, the same year the Sydney Harbour Bridge was completed (1932) in the rough Sydney dockworkers’ suburb of Balmain. He jokes his mum was too poor for him to have a middle name, but in reality as a little boy he often went to bed malnourished which gave him rickets. One of his older brothers died aged 19 in a Royal Airforce crash in World War II while the other came home from the Kokoda Trail a different and broken man. So to say that he had it tough growing up is an understatement.
Educated by the Christian Brothers in Balmain, he was bright and gifted at sports. He won a sports scholarship to Woodlawn College near Lismore (which he hated) and later played second grade for his beloved Balmain Rugby League team. Along with rugby league, his other beloved religion was Catholicism and so he joined the Carmelite order to study as a priest. Thankfully (well from his children’s perspective at least) he left the order and returned to Sydney to work and study part time at university. He was the first in his family to achieve a university degree – a Commerce degree from the University of NSW. He went on to achieve two more, a Master’s degree in Economics at Sydney and a Bachelor of Theology from Rome.
In his career, Dad raged against what he perceived as injustices in the life insurance industry and then the financial planning industry. He believed that that same sense of ethics and social justice that he learnt in his religious studies should apply in his chosen profession, finance. He spoke up against established practices and in doing so made few friends. And when we entered the profession he instilled in us the same sense of standing up for what we believed in, for leaving the profession in a better position ethically, for our clients and for consumers then when we came into it. So now my sister Claire and I rage too, in our own way and in our own manner which is very different. But we rage constructively because our Dad taught us that it was the right thing to do.
“Do not go gentle into that good night.
Rage, rage against the dying of the light.” (Dylan Thomas)
The Welsh poet Dylan Thomas wrote his poem ‘Do not go gentle into that good night’ in Florence in 1947 when he was aged 33. 6 years later in New York he drank himself into a coma and died. So he lived what he preached; he certainly didn’t go gently into that good night.
While Thomas’ life masterpiece is read at many funerals, I really wonder what a troubled 33 year old “roistering, drunken and doomed poet” (his own words) really knew about death. Although the poem was written as a son talking to his father on his deathbed, Thomas’ own father David (an English teacher) was alive and healthy (he died 5 years after the poem was written), and his doting mother Florence (a seamstress) didn’t die until five years after her son.
“Die not, poore death, nor yet canst thou kill me” (John Donne)
Thomas implores us to rage and rave; to not submit to death passively and easily. With the greatest respect to a wonderful poet, a huge part of me thinks this is just utter bullshit. A 33 year old with a privileged middle class upbringing with little exposure to death wrote a poem that will always appeal to young people. Young people who are ten foot tall and bullet proof. The young are idealistic who will be young forever and fear nothing. For them, contemplation of death is something off in the never-never, it’s something morbid that they’d prefer not to talk about. If they have to, then it’s something we can somehow overcome with action and rage.
All living things will instinctively hang on as long as they can, even terminal cancer patients. But it is madness to fight death. We can run and hide, we can deny it all we want. But death is inevitable with its timing never known. In the words of Shakespeare, “our little life is rounded with a sleep” or the poet John Donne “Death be not proud, though some have called thee mighty and dreadful, for, thou art not so”. Death is just a part of life; for all of us eventually whether we rage and rave or not.
And when death finally comes the focus ceases being about your loved one who has died. In the midst of incredible grief and sadness, the focus must shift back to the living, to the loved ones left behind picking up the pieces. Life simply must go on.
“..go gentl(y) into that good night” (Dylan Thomas)
So Dad, know that we love you. We will miss you terribly but we will be just fine; we will look after each other, especially Mum. Now is not the time to rage Dad. In your life you’ve fought the good fight, you’ve raged when you needed to rage. In rugby league terms you’ve ‘played tough, done good’. We’re all fine and you are at peace. Every day we’ve said our good byes and every day we’ve told you we love you and you us. The priest has come 3 times to give you the last rites. He reckons you’re OK with your God. You’ve watched the Tigers beat Easts and then Melbourne. So they‘re doing OK too. We’ll look after Mum. You can let go now dad; go gently and peacefully with all our love into that good night.