Mike Bowers: December 2010

(L to R) Peter Bowers, Mike Bowers and Gough Whitlam (ABC)

Gough Whitlam, dad and me at Old Parliament House 1994.

Originally published on The ABC's The Drum website on 10th August 2010

Watching your father die one day at a time.

Original comments posted below

My Dad was always smarter than me. He was stronger and always knew the right thing to say.
He knew how to fix the many problems I threw at him and as a troublesome teenager growing up in Canberra, with an appetite for alcohol, drugs and fast cars, some of these problems were not insubstantial matters easily swept away. But I could always rely on him to find the answer and find me a way out.
The boy in me always thought that it would be this way.
In reality his worldly help finished a long time ago but there was finality to it last month when my Father lost his long battle with a terrible and wicked disease.
It was the same disease that took my Grandmother. Dad had watched her slowly fade away and it affected him deeply.
"Don't let me go like that Mikey, bloody shoot me," he confided on a skiing trip to the USA in 2001. Ironically the disease would have already started to chip away at his brain.
Dad would often say really important things in a casual and offhanded way, it was just his way. I suspect it was to help lessen the blow for us on really big things, a toe in the emotional waters to see how we would react.
Dad never got to the point of confiding in us there was actually something wrong.
"I'm loosing my marbles Mikey," was about as close as it got. I think he knew, on New Years Eve in 2005 he confided to his good mate ABC journalist Heather Ewart, "There's something wrong in my head Heath, I'm not right." A master of understatement as always.
The signs were all there of course, if you were looking for them. I think I was looking the other way. I really didn't want to deal with the horrid reality.
Dad would sometimes struggle to find a word, he would constantly forget where he had put his keys and I used to spend hours trying to teach him how to start and run the various programs on his computer. Many of our friends would try their hand at getting Dad proficient with his computer. For a boy who learnt to punch out his stories on a typewriter (and I do mean punch) he never did quite get to grips with the digital age.
My Father, political journalist Peter Bowers, used to be able to coin a phrase with almost every column he wrote. The bitter irony of a man who could take words and bend them to his will was that Alzheimer's slowly drained his ability to say anything and in the end he could not even recognise his wife of nearly 54 years and my mother Yvonne.
In 1999 we travelled to Gallipoli to see where his Father, an ANZAC with the 15th Battalion, had fought and done what he once told my Father was "a lot of tough bayonet work".
We stood at Quinn's Post and Dad read aloud what he called the "achingly young ages" from the headstones of those in the battalion who had never got to live a life.
Dad was slow in getting this story together and he struggled with the requests from the news desk for a news story and a breakout about the crowds and the mess they had left behind. These are tasks he once would have been able to dictate over the phone but this time they threw him completely. His reactions worried me terribly but I was off back to Kosovo and the conflict unfolding there so I pushed my doubts to the back of my mind and got on with my own career.
Alzheimer's is a terrible journey, I have heard it called the long goodbye and it's a fitting description. It is like entering a maze of false turns and dead ends. Sometimes Dad would surface from a dead end, suddenly appearing out of the maze for a few moments of clarity.
After the Howard election loss in 2007 my phone rang. I was standing on a ladder in the ballroom of the Wentworth Hotel waiting for the Howards to arrive. Dad had not used the phone for quite a while and I was surprised to hear his voice at the other end.
"Mate," he started with his usual manic laugh when he was excited. "He bloody got it."
What followed was a good five-minute rant about the qualities of both men, the outgoing and incoming prime ministers, he was none too impressed with either although he always did have a soft spot for John Winston Howard. Dad used to say Howard loved his kids and that was a value he placed a great deal of importance on.
I had about five minutes of classic on the money Pete-isms and it was a joy to hear him at his best, I would not see this again until his funeral four years later.
I had to end the conversation abruptly as the Howards had arrived, when I rang back about an hour later Dad had slipped back into his Alzheimer's funk. Back deep into the maze where we could not see him or touch him or share with him.
That wicked, wicked disease had just teased me for a minute that the damage to his brain was not permanent. And on through the maze we would push, knowing that the end of the game would bring little joy.
There were a couple of points where his blurred world would momentarily come into focus but nothing like election night 2007.
What surprised me most is how much it scared all of his friends, with a couple of very notable exceptions. In the five years that Dad was really struggling with the disease, other than family members, you could count on one hand how many people paid him a visit.
I guess it was too much of a mirror on mortality.
Alan Ramsey ever fearless and uncompromising summed it up calling himself a coward at Dad's funeral.
"I didn't want to take the time to learn about the husk of a man that Peter had become."
I struggled with it as well. Every time I had to visit him in the nursing home I wanted to leave as soon as I got there. Although kept scrupulously clean, the smell was sometimes overpowering.
It was the sight of Dad with the life dripping out of him that I found tortuous and unbearable. They say the body under intense stress prepares for fight or flight. And I always had to fight the urge to fly away and try to push it out of my thoughts. I would sit in the car outside the nursing home cursing and sometimes crying over my cowardly attempts.
My mother put us all to shame; she took her wedding vows very seriously. I am fond of saying that at 84 she is a force of nature and she is.
She never missed a day in the two years he was in the home and the three years before that when he required constant care. Those last nine days after the disease removed his ability to swallow were a horror show. After he had survived a week without food or water my sister and I were at our wits end but not Mum. She saw it right through, an inner strength I always knew was there but made me feel all the worse for my weakness.
The last days were like watching a car with its lights left on, the energy kept draining but it seemed to take an eternity for the feint glow to extinguish entirely. Part of me wanted to protect the final glow and part of me wanted to snuff it out and end his pain,"Bloody shoot me Mikey" kept ringing in my ears.
I am now committed to the cause of voluntary euthanasia. His will to live and his hold on life was like the rest of his life, a fight against the odds and he clung on tenaciously.
I just can't see the point in watching someone you loved so deeply, fight and struggle for every last breath, my only comfort is that he knew little about what was going on, any feeling he had left that could burn through the Alzheimer's fog had hopefully been numbed with the morphine.
His screams when he had to be turned would, however, suggest otherwise.
Dad's light went out at 8:00pm on Sunday June 27 2010, he was 80 years old. He had lived a full and a wonderful life. The last few years were undignified and terrible and he would have hated every last second of them and yet he fought it until the bitter end.
There was a funny mixture of relief and grief but that all had to wait as a whirlwind engulfed us. There is an awful lot of organisation in getting your father to the point where he can finally Rest In Peace.
Dad was not a religious man; in fact I would put him in the fundamental atheist category. He would not have wanted a religious service with weeping wife and children and so we didn't give him one.
His service was filled with laughter and song and something else happened. During the eulogy while playing some vision of him during the 1983 election campaign giving Malcolm Fraser one of those political moments, I suddenly got him back. His rapier wit and insight and an irreverent cheekiness, it dissolved the recent memories. The long goodbye had turned into a sudden hello, so there you are Dad. It was the old Peter and I had him back. I don't think that a day will pass when I don't think of something that he did or said and that is exactly how he would have wanted it.
Mike Bowers is a freelance photographer and host of Talking Pictures on Insiders on ABC1 at 9:00am on Sunday.

106 Comments

Judy :
05 Sep 2010 6:20:51pm
Mike thank you for sharing your story. Dementia is a horribly sad disease. However I was very concerned re your mention of your father's screams when he was turned. Good palliative care means getting rid of pain. If that requires more morphine than the person in pain can stand, then so be it. I'm truly sorry that your dad suffered that way. To others reading this, please do not accept that level of pain for your family member. Insist that the dose of analgesia be increased until the person is comfortable.
Debbie Williams :
14 Aug 2010 4:11:27pm
I have a mother who is suffering from Alzheimer's. It is such a horrible illness, and every day I lose a piece of my mum. She is currently in a nursing home and her only visitor is me. Family and friends do not visit her anymore. She adopted me when I was 6 weeks old. Now is my time to say thanks to her, and give her all the love and support I can while she fights this long battle. Mike I am glad your dad is now at piece. I to am trying to make my voice heard to legalise euthanasia. If only our politicians could watch a loved one suffer, then they might not sweep the euthanasia debate under the carpet.
Lucy :
13 Aug 2010 2:49:53pm
There is a research study in Sydney, Melbourne and Perth looking at whether a home-based physical activity program, such as walking, can improve memory and quality of life for people with Alzheimer’s Disease. If you are interested in volunteering you can find more inforamtion on the trialspotting website (look at trial 100138).
Deborah De Santis :
11 Aug 2010 10:44:52pm
Dear Mike,
Thank you for this article - it moved me to tears. You could have been telling my story. I lost my beloved Dad to Alzheimers 2 years ago. I can relate so much to your feelings about visiting the nursing home - I felt the same. Thank you so much for sharing your story. I'm sure your Dad would be very proud.
Paul :
11 Aug 2010 12:20:48pm
Many have similar stories and need to share and need to exorcise. Few make or have the opportunity to do it so skilfully. By sharing this the the way Mike did, he has not only helped himself but many others.
Hung One On :
11 Aug 2010 11:53:04am
Good story Mike. Normally I like to say something stupid as that is my strong point however having had the same experience with my Dad I can't.

Thank you

HOO
fidel :
11 Aug 2010 8:37:54am
Hello Mike,
Thanks for the thoughtful work above. I always found your father's journalism to be interesting. I have enjoyed your segments (ABC-TV), on Sunday morning, reviewing the weekly parade of political cartoons.
I count myself as fortunate that my dear mother will be 93 years next month and has so far been able to be free of the loss of mind functions. When together, we sometimes laugh as we acknowledge that mother still has all of "her marbles".
good luck.....
Russell Dovey :
11 Aug 2010 8:27:13am
Talk about inner strength, Mike! Every time you've appeared on Insiders has made me laugh and given me the proper perspective on an otherwise depressing public spectacle that is modern politics. And the entire time your dad was dying of alzheimer's! You had the strength to cheer up an entire viewing audience, mate: I think your mother may have passed on a trait or two. Cheers!
Crazy Diamond :
11 Aug 2010 2:53:05am
Thanks for this, Mike.

I went through the same with my grandfather in 2008. The nurses called to say he was going down, and I had to leave the country the next day. I raced out to see him and told him about 50 times that grandma and his son and daughter and their partners would be visiting him the next day and that I loved him very much.

Later I got a call from Australia to say he had passed away but that on his last day, when his kids and wife were around him, he was amazigly lucid and remembered everyone.

I tell myself that I helped to focus his mind in those last hours. It helps a little, since I couldn't be there at the end.
Tom :
10 Aug 2010 11:02:46pm
While we wait for the euthanasia solution for dying I note the insight and depth of experience reported by Mike in the brokenness and powerlessness of his journey with his father. I wonder what Mike's story would be if sanitised by our perceived capacity to control suffering and death. As a minister, and in contrast to the best aspects of my ministry, the worst moment every time is to push the door open and enter the palliative care room, and join the family of the person who has perhaps only moments more to live. At that moment I have to let go of all my unchallenged notions of being in control, being in control of emotions, my limits of vulnerability, destiny, even my own death. I see people who are traumatised by the witnessing the true messiness of life. And strangely it is in the following moments that I experience the subversion of what I thought I knew. I experience freedom from having to be in control, I experience the irrepressible force of love as people hug and kiss the mutilated form that is their loved one, I experience death as a gift. The present absence of euthanasia does not leave us entirely bereft of anything that is valuable. Even just as a humble practitioner I sense the potential of what we might lose in our contemporary demand to fix it, and fix it now. And even though I know I should stop here I foolishly venture to say that if we are so concerned to improve quality of life by ending life why is it we (note I didn't say governments) constantly diminish the resources available for the quality of care for the frail aged. There are lots of elderly people who are full in the quality of mind but empty in the quality of their life.
RSgerry :
10 Aug 2010 10:46:15pm
In March I travelled to Switzerland with a friend so he could go to Dignitas. John had been diagnosed with cancer two years earlier. In January of this year, he had been given 6 months to live. His was a rare and aggressive strain of cancer that did what cancer does best, ate him away.

John had previously loved good food, good wine, good company, travelling and football (soccer). In his last 12 months, he started to hate any alcohol, all food began to taste like cardboard, he was unable to stay awake long enough to watch an entire game and couldnt talk for very long. All that he enjoyed previously was gone. So John took the steps to end his life with dignity.

I was unsure of how I would feel about the whole experience, but it was so amazingly peaceful and DIGNIFIED. John has as much time with his friends as he wanted (there were 4 friends), took a drink and simply went to sleep. There was no thrashing, no pain, just sleep.

Mike, like your dad, John was once a very proud, succesful man reduced to requiring help for the most simple tasks. Whilst euthanasia is a moral and ethical minefield, I really believe that with proper regulation and control, this offers a dignified exit to those we love.

Gerard
Ivan de Vulder :
10 Aug 2010 8:30:43pm
Dear Mike,
Your words moved me to tears. The fear I have is to see the same happen to my beloved parents. I can only hope that I have the fortitude to tough it out like you. Which is why I also hope the Federal Government finally wises up and passes Voluntary Euthanasia into law.
Thankyou for your wonderful piece.
walker :
10 Aug 2010 8:03:45pm
Lovely piece, Mike.
Noel Pearson :
10 Aug 2010 7:39:53pm
Mike, I wanted to send you a note on hearing of the passing of your Dad. Lew told me about the funeral and your fine words then, and I was transported back twenty years ago when I first met your Dad and yourself at Lockhart River, when we were kicking off the Cape York Land Council. Having come across your tribute here by accident, I thought I might as well send you my condolences and best wishes via The Drum. I have never before written on a blog, but I thought that I should tell you that I always looked back with great fondness at my then youthful acquaintance with your father, who was a legend and someone I loved to hear and read on the subject of politics. If I know anything after missing my own father these past two decades, your father will never leave you, and few will be the days when he is not on your mind. Haven't seen you in ages, keep well mate.
Bill Pitt :
10 Aug 2010 7:30:49pm
A valuable insightful piece Mike - thank you. Not the way any of us want to go. The sad thing is most of us are touched by this cruelest of diseases in some way. Talking about it helps.
Chris Z :
10 Aug 2010 6:56:34pm
Sorry, but while Mr Bower's death is no doubt a tragedy for his family and close friends, the only reason that the rest of us are supposed to feel sorry for him seems to be because he was a 'progressive' journo.

I'm sure that if Mr Bowers had been a member of a less fashionable profession - a property developer, say or a mining executive - most of the people agonising here over his death would be thinking, and perhaps saying, "good riddance".
Mk2 :
10 Aug 2010 6:31:13pm
My mother is in a dementia ward with Alzheimers.

Despite the good facilities and the care and attention given her by the excellent staff it is a very grim place and traumatising for my children when I take them to see her on the rare occasion.

Your last article could have been a description of the farewell we gave my dad.

Many thanks for your article.

Yo
phil :
10 Aug 2010 5:25:12pm
Thanks. It was good that you tackled a difficult subject, particularly for you. I think it helps us all to deal with grief.
Hugo First :
10 Aug 2010 4:49:32pm
I am a great supporter of voluntary euthanasia, however, I suspect it is not the answer to alzheimers. When a person has no capacity to make decisions, when I am no longer "me" - how can I convince others that my time has come? The voluntary euthanasia we lobby for seems to be aimed at those in physical distress. At what point does a person with Alzheimers or other mental illness know they want to die? How does family/doctors/ society know when to respond?
As long as we have this "life at any cost" attitude(emotional, I might add, we cost care down to the last dollar) we will continue to inflict long term suffering on individuals and carers.
I work with nurses and doctors who are outstanding in their profession and caring. However, I and many others want society to support our choice to make independent decisions for ourselves...or pay the huge costs of giving us all care which does not diminish any aspect of our quality of life.
cathie :
10 Aug 2010 3:57:36pm
Poignant and thought provoking. Thank you.
Hassa :
10 Aug 2010 3:40:02pm
A wonderful personal and honest tribute you brought me and I suspect many readers to tears.
Krose :
10 Aug 2010 3:17:24pm
I worked in current affairs int he turbulent 70s and I aways enjoyed and respected Peter Bowers journalism. His questions at the National Press Club Lunchs were always the highlight. Thanks for the memories Peter.
Reading all the Comments submitted, it is apparent that it up to the Baby Boomers to carry the load and make Voluntary Euthanasia the real option it should be. Thank you Mike for sharing.
Margot :
10 Aug 2010 3:04:10pm
Just beautiful Mike. Take care.
Duke :
10 Aug 2010 3:03:16pm
Peter, as todays breed of dull, grey lowest common denominator politicians illuminate the giants they poorly follow, so it is with most of todays journalists. Maybe its the loss of the old Parliament House and its confined sociality, together with the slamming style of the typewriter thumpers, but where today are the mighty wordsmiths who illuminated our political lives. Mungo is still there, and Ramsey, and your dad was up there with them. Vale a great character, and your article does him proud, son.
JD :
10 Aug 2010 2:40:53pm
Mike,
thanks for writing this. No doubt it was difficult.
My dad also died from Alzheimer's disease, when I was just 23 years old. He barely made his 65th birthday, through early onset Alzheimer's.
That's 12 years ago now - and it's not really gotten any easier for me. I still think about him everyday.
Alzheimer's frequently seems 'forgotten'. It's clearly not as popular as breast cancer and prostate cancer etc. Yet, I think it's the worst disease around. Simply, if you look at your life, it's made up of your memories. Family, friends, events in your life - then you can't remember them. Can't even remember the person you were shared your life with for so many years. The cruelest disease of them all.
May your Dad rest in peace.
Jason.
nathang :
10 Aug 2010 2:35:00pm
The tears well in my eyes as I read this piece.
My mother passed away almost a year ago, mercifully suffering a heart attack,having suffered from Alzheimers for ten years or so.
We can remember her as still living with dignity at home with dad and not slowly deteriorating to the stage where she could not feed herself and dad being unable to tend for her.
Ron Taylor :
10 Aug 2010 1:46:22pm
The Volunatary euthanasia movement recently lost Mary Walsh and it is people like you who are picking up the torch. Thank you.
Tom :
10 Aug 2010 1:32:41pm
Thank you in the telling of your journey with your dad and the remembering of his story. I'm a minister of religion. Regulalry officiating at funerals I always include as part of the preparation a gathering of the family for story telling about their lost loved one. Originally I did this to help me prepare for the funeral service. After a while I discovered an entirely different benefit. When the family member died after a long period of illness this gathered remembering gave back to the family the person they used to know. The recent experience of "the slow goodbye" became only a small part of a rich and wonderful memory of life with their loved one. My personal confession is that I've become a bit of a junky for it. It is a time when even the bad bits end up being as valuable to the story as the best bits. From my perspective of the nature of things I wonder if I'm actually witnessing the very character of God graciously embracing, and making all things part of the perfect, from the perspective of love. Whatever, it is those shared moments with families that make me think no job could be better than the one I've got!!
John W McQualter :
10 Aug 2010 1:14:02pm
Thank you Mike! I treasure what Your father once wrote about 'The Australian Digger of the First World War'.
"Let's face it, the Australian Digger was an ordinary man who did extra-ordinary things!" ....."That is the key to being an Australian, being ordinary!"
Farewell Peter Bowers, you will be remembered in my family.
Jock b1932
granny :
10 Aug 2010 1:07:22pm
Your pain and hurt is shared amongst us Mike, this reminds me of an aunt we had, she was a LADY, she was always properly coiffed, fingernails groomed and painted. She was always fabulously dressed, a DJ preferred customer, she would be one of the first to be called when the new collection arrived. She had no children, lost two husbands, one through war, the other a heart attack, both husbands were extremely wealthy. Then she got Alzheimers, it consumed her at a great rate, my parents had to find care for her. They would visit, it broke my fathers' heart to see her, no longer the proud lady, quite often when they visited her she would not be in her room, she would be in another room, stark naked, trying on clothes that belonged to another patient. My parents organized a hairdresser, manicures and podiatrist for her, always new soaps, perfumes etc. Finally when she succumbed, there were only four people to see her off.
Mandy :
10 Aug 2010 1:05:49pm
Thank you Mike, for publishing the story of your family. I hope that the cause of voluntary euthanasia will eventually be adopted by a politically expedient majority, because I want to be able to choose my own time.
Rob Clements :
10 Aug 2010 12:58:41pm
Thank you, Mike.
scott :
10 Aug 2010 12:51:07pm
I saw the clip of Peter Bowers asking Fraser if 'he'd like a little bet' on the election result - absolute classic! RIP.
Margi :
10 Aug 2010 12:42:57pm
Bravely and beautifully put. An honourable tribute to your dad, and to all the others we watch slowly slip away each day.
Thankyou
John :
10 Aug 2010 12:16:28pm
Thank you Mike for a wonderful and moving article.
My mother is aged 59 and is now in the terminal stages of metastatic cancer. She has worked very hard in her life and I think this has also aged her before her time. The cancer treatment is not palliative (yet), but she is permanently drained of energy and sleeps most of the day. While the emotional toll on my father is immense, he is firmly resolute in his role as a carer.
It is clear to those of us closest to her that her mental capacity is rapidly diminishing. There are emotional outbursts and accusations that just don't add up.
What is most difficult is gaining acceptance from extended family that we are dealing with a mental health issue and what that entails. That this is not the real 'mum' but rather a sad and terrible decline. Some take her behaviour literally and do not understand the irrationality that occurs with poor mental health. It has stretched some important relationships to breaking point. The fact that she is seeing a psychiatrist too is insufficient evidence to individuals who feel personally aggrieved by her actions.
What is saddest is that some family interpret her current incarnation as a reflection of her true self rather than the sadly tortured individual that she has become.
I will share your article in the hope that it provides my family with greater insight. Thank you again, and thanks to the fellow bloggers here. Your stories help in making sense of a confusing situation and recognise that we are not alone.
David :
10 Aug 2010 11:49:41am
Mike,
Thank you for sharing your story about your father. My father was an academic all his working life. He was`Headmaster at one of Australia's top private schools for 26 years and was instrumental in changing the way education was taught not just in our state but in the broad Australian community. Your story touched me tremendously as my father is now in the later stages of this vile disease. He can't relate to anyone, barely remembers people who visit him, and constantly says "what can you do",pleading to be dragged from the hell that is now his life.
My mother, as yours, spends every day in the nursing home trying as best she can to give him some comfort, but we all wish, including him I'm sure, that this will finish and he will be at peace.
My biggest regret is that he came from a generation that found it difficult to express their emotions.I had hope that when I became an adult that he would be able to express his feelings for me and possibly say "I love you son". This will now never happen.
Carlie :
10 Aug 2010 11:38:57am
I always enjoyed your father's work; he was
witty, perceptive and human. I'm so sorry that
his end was such a difficult one for you all,
but that was a very moving tribute.
Suzanne :
10 Aug 2010 11:36:49am
What a wonderful tribute from a loving son. I share your views on euthanasia and would not wish the long, painful goodbye on anyone. We should all have the same right to dignity that our beloved pets have, yet this is denied us.
Your dad was clearly a great journalist, and I quote briefly from one of his exceptionally lucid analytical pieces in my doctoral thesis. His journalism, and the journalism of several of his revered colleagues of the same era, should be better valued by the community. It is representative of the true fourth estate, an indispensable part of democracy.
Blair :
10 Aug 2010 11:29:57am
Nice piece of honest writing from the heart, Mike. Thanks for sharing those personal and precious moments . . . You are one of us!
Anthony :
10 Aug 2010 11:27:47am
My respectful condolences Mike.
This magnificent article has done much good.
If I were to allow Flossie and Zoolie (much loved family members) to suffer as Peter did, the R. S. P. C. A. would have me in the click as a barbarian (as they well should).
When the time comes, the cause of my death will be voluntary euthanasia.
I would have loved to have met Peter Bowers.
Love and good luck Mike.
jenbrad :
10 Aug 2010 11:18:30am
My Dad had a different form of dementia - he had bleeding into the frontal lobe, slowly and steadily over his last few years. As he had some hearing loss as well (WWII) we were never sure how much of his misunderstandings (and subsequent over the top reactions) were due to either.

The hardest part I felt was having to get used to the new Dad after for me, close on 60 years of a youngish, fit and active man (he had a gold handicap of 3 or so up till 80).

But then, when he died, it had become a relief - his last days were not as bad as your father's - he was not in pain, and kept comfortable.

Then it takes ages afterwards to get back to mourning the man he'd almost always been, as the "new" one had been so prevalent in one's recent memories.
Bools2 :
10 Aug 2010 11:18:10am
Thankyou.. I lost my Mum to Alzheimers a bit over a month ago.. for her it was a 12 year journey. The last 2 weeks were more than distressing to witness. Even though good conversation went years ago, she maintained her sense of sharing, a wink and a smile..that is until those last few weeks.

I've written a Tanka poem for my Mum:

"A first cry enters
The sweet smell of milk comes too

Love and care promised

At ninety-three gone from Earth
Longing to share lingers still"
luke :
10 Aug 2010 11:17:52am
Mike,
My daughter died of Battens Disease two days before your father. Although she was only four, her journey through the maze of neurodegeneration was as you described your father's to be, terrifying, tragic, and full of lost hope for what should have been.
Thank you for sharing your story. While it was painful reading, I am glad I did. Your good humour and positive outlook on life is something I really enjoy watching on Insiders and it comes through in your writing. There is an answer there for everyone struggling with tragedy in their lives.
Elizabeth :
10 Aug 2010 11:16:01am
Mike,
I am very sorry for the loss of your Dad for you and your family. My Mum went in similar circumstances although she was 43 and it was the insidious disease cancer. I too became a firm supporter of voluntary euthanasia after her death.
Sorry again for your loss and thanks for sharing yours and his story.
Graeme (the other one) :
10 Aug 2010 11:13:54am
Thanks Mike, I have fond memories of your father. Euthenasia seems a difficult solution to this disease. By the time it becomes clear there is nothing more to be squeezed from a life the ability to decide to end it may well have gone. To give relatives the power to decide places an awful responsibility on them and would leave many with a feeling of guilt I suspect (what if I did it too early, for the wrong reasons etc). Still I would be happy for someone to make that decision for me when the time comes.

In the meantime there seems to be progress in finding treatments for some forms of dementia. It will take time and there will be many false starts but a lot of people are working in the area and there is good reason for hope. To me as a layman it appears a big part of avoiding Alzheimers seems to be in controlling blood pressure and so avoiding microbleeds into the brain and resulting plaques.

Best wishes Graeme
Trent :
10 Aug 2010 11:09:44am
Thank you for penning this, it was beautiful.
Deniise Hynd :
10 Aug 2010 11:08:30am
Thank you for sharing and for your committment to support the option of an informed dignified end for people as well as animals! I try NOT to let the last weeks of my mother's life with a brain stem stroke be part of my recurring memories and thoughts of her but it is hard when I and my family had to be almost aggressive with many of the medical and nursing staff of a large teaching hospital for my mother's dignity and her right to even consider let alone discuss options other than tube feeding and long-term nursing home placement! Please continue to bring on a real community debate and actiona round these human dignity issues!!
Kath :
10 Aug 2010 11:00:45am
Thank you for writing this. The lapses in and out cause such confusion about what would be the right thing to do. My father is utterly miserable in his nursing home - despite all the care and attempts at diversion. Any periods of happiness seem to last for less than a minute and are getting harder to arrange. He used to repeatedly say that if he were an animal someone would have put him out of his misery and pain by now. He does not have the opportunity nor capacity for suicide anymore. I do not have the courage, nor the certainty (nor frankly the devotion to sacrifice), to risk the emotional and legal consequences for myself if I were to do what he says he wishes. This has made me realise that I would not be brave enough to make the decision for anyone else even if voluntary euthenasia became a medical and legal option. The dilemma is gut wrenching - how much happiness is enough to justify how much misery? Yes, the law needs to change but perhaps we also owe it to our loved ones to make our wishes to be released after some number of years of misery explicit and legally documented. We are encouraged to do this about organ transplants following an accidental death.
John :
10 Aug 2010 10:58:50am
A story that does justice to both father and son. Moving, scarey and filled with love. This story and the Insiders tribute are testament to both of you.
many thanks.
Martin :
10 Aug 2010 10:57:37am
Yep, it is so cruel, as I know from watching my wife caring for her mum, and from my dad with Parkinsons.

I remember meeting both Peter and you at Gallipoli at a breakfast after the dawn service. The close bond between you was obvious then and clearly continues as a great strength. All the best.
Garry :
10 Aug 2010 10:45:45am
A very moving article Mike, my Dad died from MND. I know how you feel
James :
10 Aug 2010 10:43:11am
Mike,

That was powerful, touching and thought provoking writing. My laptop screen looks a little blurry, though I'm sure there's nothing wrong with it.

You'll be supported in, and be supporting, the campaign for voluntary euthanasia, and I hope I'll be able to help.

Thank you for sharing your memories, and for sharing with us your love for your father.
teddysea ®:
10 Aug 2010 10:38:36am
Thank you for passing on your understanding Mike.
Peter :
10 Aug 2010 10:34:47am
Good story mate. One that is retold constantly - in many families including mine. I agree with your views.
Morphine is the untold dark secret in these cases but its use limited until those final bitter moments.
Mary3 :
10 Aug 2010 10:29:34am
Beautiful tribute Mike.
Having shared the Alzheimer's journey with many patients and their loved ones I would add that it is impossible to 'fight' this disease as there is no chance to be the victor. Rather, like many terminal illnesses, it is "endured".
adrian :
10 Aug 2010 10:28:03am
Thank you for this piece.
Dimitrios :
10 Aug 2010 10:26:54am
My eyes swelled with tears when I read your story Mike. I lost my dad recently under similar circumstances and know exactly how you feel. The fact that you have the courage and kindness to share such a deeply personal experience with all of us speaks volumes about your character. I have nothing but respect and admiration for you. Take care my friend.
Kanooka :
10 Aug 2010 10:25:16am
Mike I am rarely moved to tears, but this morning your demonstration of humanity and humility made moisture grace my face. I am not ashamed to admit that when Dad died I suffered tremendous guilt because I knew I could/should have spent more time with him, like you I was scared.

Peter would have been so proud of you, this tribute says as much about you as a man as it does about the passing of your Dad.
Russell :
10 Aug 2010 10:20:00am
Dementia, 'the thief of the mind', finally stole my wife away on March 3. She was 68 and we would have been married for 46 years on April 4. Although we had known each other since we were next door neighbours from the age of 10, she had not known me for at least six years -- had not spoken since 2003. We could walk together hand-in-hand by the sea that she loved; I could talk to her and be moved to tears by her smile; but I could not ease the fear she described, simply, in a 1999 diary: "I'm frightened." On the first day of my retirement, my dearest was diagnosed with cancer and then suffered the added trauma of grand mal seizures that put her on life-support for many hours. Through all this she remained the placid person she had always been. It was my privilege to care for her at home till she quietly slipped away. I walked the beach, alone, on what would have been our wedding anniversary.
Topomountain :
10 Aug 2010 10:19:51am
My dear old mum lingered on for ten years. Its wrong. I believe in a secular government. Unfortunately we are heading the oposite way, slowly but surely. A politicians religious views are dictating how we live and end. Its wrong.
gidupngo :
10 Aug 2010 10:15:16am
Voluntary Euthanasia.. As a lifetime liberal voter-I for the first time will vote informal. Why?!.. I dont trust abbott and his catholic views on the above subject. I believe in Liberty of the individual and that includes the natural right to choose when enough is enough. Unfortunately we are controlled by polies with a religious bent who have other ideas. To hell with them- I will choose when its time. Will you?
rosieam :
10 Aug 2010 10:10:48am
Your father's story is, sadly, the story of my father. My father, a well respected and capable man afflicted with Alzheimer's disease, wasted away over 10 years.

I joke (seriously) that if/when I am afflicted with the same disease voluntary euthanasia/suicide will be my way out.
Big M :
10 Aug 2010 10:08:06am
Mike, thanks for sharing something meaningful. Your article is an oasis in a desert of election sand. Not that it was a pleasant read, made me cry, you bugger! We've have a family member with rapidly evolving dementia. He has gone from being forgetful and unable to drive, to incontinence and complete bewilderment in about three months.

I think I became a proponent of euthanasia when I started my nursing training in 1981. It doesn't take very much exposure to terminal suffering to change one's views!
Ganymede :
10 Aug 2010 10:02:15am
Mike, tears are brimming in my eyes as I write this, tears of sorrow for your loss and tears of happiness for your ability to transcend it with memories of the joyous times.

I am watching a similar picture unfold for my mother but it is the physical rather than the mental that is deserting her. Her mind is becoming clouded from the pain medication and her frailty is heartbreaking to see in somebody who was once so vigorous.

Your bravery in sharing your soul and journey is outstanding and I feel ashamed by my own head in the sand rose coloured hopefulness that mum will improve as I know logically she won't.

In light of your article I will be trying to be braver and wrench every last moment of connection from the inevitability of what is approaching us all.
Simon Sheldon :
10 Aug 2010 9:59:32am
Mike
Thank you, my father died last year and thankfully his time in the twilight was mercifully short but it was still agony to witness and I allways felt guilt that I found it difficult to be there and never knowing what to say.
I grew up in Canberra and my father worked in and around politics for my all my childhood. I don't know if I was ever able to lose that feeling of being a boy in his presence and never quite believed he would not be there. It is only now nearly a year later I can think of him as he was and in my mind ask "what would dad have thought of that?"

Again thank you, it made me cry but it made me smile too, your father was lucky to have you and you have been privleged to have had him.
Grant Dewar :
10 Aug 2010 9:50:20am
Mike,

Peter was the best of journalists who not only faithfully reflected the story but asked the important questions - educating us all in the process. I enjoyed him on the box and in the press. Your story is a great tribute to him and the craft he has passed on to you.

Enjoy his memory
Marian Dalton :
10 Aug 2010 9:46:31am
The hospital turned off my Dad's respirator, withdrew the saline and turned up the morphine and the sedative.

Twelve hours later of watching him gasp for breath while semi-conscious, he suddenly woke up with terror in his eyes. He couldn't talk or really move, but he picked his head up off the pillow and looked around wildly as his breath rattled and choked. Then he arched his back, tried to take one last breath, and the most terrible sound escaped him as he died.

I will never forget that awful long vigil where I prayed for him to die quietly and quickly. My deepest sympathy goes out to you, Mike - you are so brave to bring this story to all of us, and to show your commitment to helping people die with some shred of dignity and decency.
Marcella :
10 Aug 2010 9:34:49am
Thanks Mike for sharing your experience of the loss of your Dad ,my sincere sympathy My Mum died of dementia /cancer in 2001 .Luckly we was able to care for her at home It was such a stressful time for her, all our family and friends .I became involved in rehab and support for people with heart disease (got a job offer the week after she died !) I now am involved with dementia patients again and really feel we can do more to support famalies and carers ?.Any thoughts or comments ?.
Silvia :
10 Aug 2010 9:27:27am
Thank you for sharing your story - your dad was obviously and amazing man.

I also watched my father die a terrible, painful death. He had asked that we not let him suffer but our hands were tied as were the hands of our GP. If I could have given him release, I would have - in a flash. But instead he had to bear the indignity of terminal bone cancer and although he retained his faculties up until about 2 weeks before he passed, he suffered.

It is tragic that we cannot be "humane" with people and yet would never dream of allowing a beloved pet to endure such pain. No, we had to watch him trying to will himself to die and then apologising that he couldn't do it. We had to watch him slowly and painfully die over three days until, finally, his heart gave in and stopped.

How is that just?
Alan Kennedy :
10 Aug 2010 9:22:02am
Mike,

Every father should have a son who loved him as you did. I shared some time with Peter during the Fairfax turmoil. He was a bloke who was fearless, outspoken, loyal and incredibly funny. It was a privilege to know him. I think everyone should remember that it was Peter who got Gough Whitlam and Malcolm Fraser onto the same stage; the first time they had been seen in the same room since November 1975. They did it for him because he had convinced them that media diversity was an important par of our democracy. It was Peter who lifted up the phone and told PM Hawke some Fairfax journos wanted to have a word and we were ushered in to to see him. I remember thinking how much love and respect Hawke had for Peter. He was a one off. Thanks for sharing this with us.
blackbird :
10 Aug 2010 9:12:14am
Wow.Thank you Mike.

My 60 year old mother is in the mid stages of Alzheimers. We have a long and hard road ahead of us and I hope that along the way I too will be able to find the strength to celebrate her life.

Right now though I just feel helpless and somewhat selfishly, robbed of the mother that I have known and loved for all my life and the grandmother my children have barely met.
SM :
10 Aug 2010 9:11:29am
Thank you Mike. Thanks for sharing and for showing us the dignity and humanity of yourself and both of your parents.

I think all who read this are a bit richer (if somewhat teary) for it.

Thank you again
serena :
10 Aug 2010 9:10:51am
Mike I feel for both of you. My dad had parkinsons, he was like yours.. always knew the answer to everything.. a very smart man..
to watch this disease take hold of such and independent human being , becoming totally dependent on his wife and family.. so sad.. got the stage he coulndt even communicate.. slow and painful. to watch at least.. though he never let on how bad it was.. you could see the emotional pain even when he could no longer speak.. thanks for this piece...
the yank :
10 Aug 2010 9:07:26am
Thanks for the article and for those that have recounted their experiences with Alzheimers.
Here is a little of my own experiences with the desease.
Both my grandmother and mother contracted the disease, both lived into their 90s.
My mother took care of my grandmother as long as she could and then had to send her to a home. My grandmother, never an easy person, became abusive in her later stages.
My mother showed signs of the same disease around her mid 80s, but unlike her mother she stayed the kind hard working person she always was.
Living in Australia it was impossible to see her very much.
I saw her for a time in late 1990s when the disease was just taking hold. By the time I left she couldn't remember my name but she could function enough to work part time at a super market, that hard working part of her never changed no matter what else happened.
Then towards the end I got to see her one last time. Unable to feed herself I asked, and was given the job, of helping her. She held onto my free hand the entire time but didn't say a word just opened her mouth when I brought up the spoon.
Just before I left the nurse managed to rouse Mom from her state. She looked at me, said she loved me and then went back under.
I was utterly shocked but eternally grateful for that nurses effort. God I hope they find a cure for this disease.
jaycee :
10 Aug 2010 8:52:57am
Very moving article..and if I may contribute to that wonderful pool of anecdotes that tell of the confused though sometimes ironic descent, my own grandfather, a lively innovator and inventor all his life, went down this sad street, with an excited admission to me, the idea that he had finally, after a lifetime's search, discovered the means of "Perpetual Motion"....perhaps, truly, he had.
Sue :
10 Aug 2010 8:47:53am
Thank you for sharing this moving piece. Bending words to will is a family trait it seems.

Your comments on looking the other way really resonated with me. I am studiously ignoring the signs in my mum currently, and I know them well from our experiences with her father. I'm not ready to start the long goodbye, but unfortunately I will not get to choose the schedule.

Your words, however, have clarified for me the need to embrace the time I have with Mum. The thief may slowly steal her away, but I will make sure to cherish every moment that she shines through the fog.

Thinking of you and your family.
Bob :
10 Aug 2010 8:47:32am
Extremely moving and a tribute to both your parents if that is who you get your courage and humanity from.
Adam from Holt :
10 Aug 2010 8:44:08am
A really good piece, well worth the investment of time and energy to read.

Quality blogs and well-crafted personal pieces are a really valuable use of the internet.
Carolyn :
10 Aug 2010 8:39:02am
My dad was a successful horse trainer, and I know that if he had a horse as dysfunctional as he is now, he would have had it sent to the doggers. It would be a kinder way to go.
Your words touched me, thank you for sharing.
Mary2 :
10 Aug 2010 8:33:04am
As someone who has spent a lot of time working with people with dementia, I see things from the other side.

It can be very difficult meeting someone who is aggressive, screaming or very undignified to remember that they were once a proud, loving person with a history of heroism, kindness, raising children, successful career etc.

Working with people in their last stages of life can be great fun, and is an amazing honour, and I would urge everyone working with oldies to read stories like this and to remember or imagine the people under the disease.

All too often we see only the disease.
Adam :
10 Aug 2010 8:32:53am
Thanks.
ij :
10 Aug 2010 8:30:57am
This, and so many stories like it, are why we need euthanasia laws for those who want it.
Anne :
10 Aug 2010 8:24:37am
A lovely tribute Mike - it brought a tear to my eye as I remember your father at the peak of his journalistic power. And yes, voluntary euthanasia will be on my agenda too, a little down the track.
smaaty :
10 Aug 2010 8:19:28am
Beautifully described, Mike. My sincere condolences. Your tribute on The Insiders also touched me. As an ex-nurse and carer for nearly 40 years I watched many strong, profoundly good and very smart people slowly fade into oblivion and incapability. None would have wanted to endure the indignity, yet somehow not many gave up - they seemed always to be searching for the reality that was just outside of their grasp. So sad. My own Dad almost broke my heart a week ago with an undeniable first real Alzheimers moment. I know what is coming and am afraid, but am determined that he have a full life for as long as he can. I, too, believe in voluntary euthanasia, as does Dad, but we both hope his body will give him a swift and sweet release long before that awful, kind, but sadly illegal way out becomes much desired by all who grieve every day for the man who was...
RIP Peter Bowers. It is obvious you are loved and missed.
lpc :
10 Aug 2010 8:12:23am
Thank you for sharing this - I lost my mother to Alzheimers about a month ago and the description that you gave of the 'long goodbye' is very apt. One of the things you miss when someone dies still mentally alert is the sudden realisation when you think of something you want to ask or to share that they are no longer there. That's long gone by the time of the funeral of someone with Alzheimers.

I did, however, deeply value the times I could get to the nursing home - not often as I lived interstate. Each week that I could get there I would feed her lunch everyday and value the chance to give her some small part of the care she gave to me. At least until that awful time when she could no longer eat. Or give me a smile and a kiss. Even though she had no idea who I was.

My mother, too, would have hated what happened to her. But it was hard enough to withdraw medication at the end (just a day before she died) so I don't know that I would have had the courage to take a more active role in ending her life. I couldn't wish her a minute more of life - nor a minute less.
Kent Bayley :
10 Aug 2010 8:11:25am
I was so moved when I read this Mike and what a wonderful lesson for all of us. I have a very big plasma and my envious son sometimes jokes, when you die can I have the plasma. I tell him no and that I am taking it with me and I understand he means no harm. This article however brings home just how short life is and how we all must treasure every breath and that we cant take anything with us. I hope my kids will respect me just as this son respects his father. Thank you for sharing and by the way there is a real Christian God and I have a notion that you Dad will be ok.
whitelephant :
10 Aug 2010 8:07:10am
A great Journalist a good man and a sad loss.
Thanks Mike for letting us know.
Aunty :
10 Aug 2010 7:55:10am
Wow. Tears in my eyes - Thank you for sharing.
ponyup :
10 Aug 2010 7:51:16am
Thank you for sharing such a personal story, I watched my grandfather die in a similar way, well I would have except fate intervened and he slipped one afternoon in the garden, after heavy rains, hit the back of his head on some rock edging and died 2 days later in hospital.

Before that though, we watched him change from a wise, gentle and kind man to an aggressive and agumentive man who went to the letterbox 50 times a day, got up to go work at 5am (he'd been retired 25 years, and put my nan through hell accusing her of affairs one day and not knowing who she was the next. Like your mum though, she never gave up.

My parents and uncles and aunts were making arrangments for him to go to a nursing home when the accident happened, so things never got that far.

I remember the Pop who would tickle me, help me with my homework, tease me about boyfriends and tell me how beautiful I was. I had no idea who the other Pop was. :(

Euthanasia is a difficult subject but after this and also watching my cousin die of cancer at 19, I am all for it.
Kate :
10 Aug 2010 7:51:11am
My grandfather died with Alzheimers and although sadly I was not living in the same state as him, I can only imagine how hard it was to watch him deteriorate. My father found it particularly hard to watch as it was his dad. My father also being a journalist would have found it particularly confronting as I am sure he would have found it terrifying to watch someone lose their power of communication. I can only hope that it never happens to him.
Thank you for giving me an idea of how terrifying it is to see someone slip away so that I might understand how my father felt when he lost his dad.
DavidFM :
10 Aug 2010 7:41:02am
A moving tribute and eulogy. Thank you.
Emmjay :
10 Aug 2010 7:38:53am
Those of us that walk a common road salute you, Mike. Look after yourself, sport.

Gallipoli

Tuesday, December 21, 2010

The Long Goodbye

Originally published on The ABC's The Drum website on 10th August 2010

Watching your father die one day at a time.

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