The featured photo is of Dad rubbing his hands in glee….”got her”! That’s Mum!
Before they were married, before 6 kids, before Mum was gone, before dementia!
Here they are again in 1988, Dad doing what he does best…..hamming it up for the camera, or the crowd.
With Tim on his wedding day, doing his usual.
resident DJ, Mozart style!
The family at his 80th.
Up till now he was still functioning quite well, and if you didn’t know him too well you wouldn’t suspect anything was amiss.
But sadly, things were amiss, missing, forgotten…
Early onset dementia was the diagnosis a couple of years earlier, whatever that meant? He looked fine, just a little vague. Nothing to be concerned with, nothing? He was a bit like a functioning alcoholic, all calm on the exterior, still playing it up for his audience, probably completely panicked inside.
Knowing what lay ahead.
Just not how horrible it would be, how hopeless he would become, how dependent on others for every moment of his groundhog day. Except in Groundhog day every day starts the same, with dementia every day is just a little worse.
I was reading the other day from Pete Evans Facebook page how he surmises that diet has a direct influence on the rate of dementia, not withstanding that dementia & Alzheimers is more prevalent now due to us living longer due to advances in medicine either curing, managing or treating all manner of illness/disease! He reckons our prevalence for low fat diets, high in carbs and sugar has helps push dementia up the scale.
Well, Dad lived on a high fat diet….fat lot of good it did him!
You hear and read all the time about the right to life, the right to die….euthanasia. Philip Nitschke gets a bum wrap from the hard right, and can be a bit abrasive in his views, but on the issue of choosing the timing of your death, when the future is all downhill, he is to be commended.
Honestly, there has to be the ability to chose the timing of your exit with dignity. I know with the likes of dementia, by the time your life is no longer productive you have lost the cognitive ability to make decisions pertaining to your exit strategy! It’s a tough, complex issue which needs thorough and concentrated discussion, without the religious zealots, and the nutty ultra right hijacking proceedings.
God knows I’m no great fan of the Greens, but Richard Di Natale‘s proposed ‘dying with dignity’ bill needs proper and considered debate, and hopefully the compassionate result will occur. Mind you, I’m not holding my breath, religion seems to always become the sticking point with any discussion around such issues. I know there are complex moral and ethical arguments which have some merit, and many have strong view on the sanctity of life and God’s will etc, etc. But what about the dignity of the sufferer?
Yes, the bill is aimed at those with a terminal illness, and their right to pick the timing of death, but for dementia suffers when is the right time? By the time they are ready to pull the pin they have forgotten where the pin is!
I swear to God, if Dad could have seen into the crystal ball he would have taken the ‘green dream’ years ago! I know I would.
I challenge anyone to walk through a dementia ward and see the hopelessness in the eyes of the inmates….I mean residents, and ask yourself…”is this what I would want?”
Five years ago Dad could clothe himself, feed and water, go to the toilet unaided, converse, recognise!
This was at Christmas 2009, his last outside. Looks thin, a bit confused. Cracked it early on, I think the noise got to him, and marched outside to get in his car and drive home. If he’d managed to do so I’ve no idea where he would have ended up! Bruce had to make a mad dash to get all the keys out of the cars before he had a chance to make his escape.
After months slowly regressing he finally went full time into the local nursing home attached to the Mansfield hospital. Buckland House is wonderfully staffed by dedicated nurses and aids who genuinely have the best interests of the patients at heart. How they do it I’ll never know, they have the patience of saints, and the hearts of gold, but also the pragmatism to not let emotion get in the way of the duty required to care for these poor souls in their dying years.
Dad’s framed photo looks pretty good by the front door, misspelt surname not withstanding! Plus, not sure about the fishing….
He looks ok in this photo, taken early in his stay. The beard is an interesting stylistic touch, easier than shaving.
His tasting, which used to be quite refined, have simplified of late.
Sprung him recently clapping along to a Andre Rieu DVD, his former self would have slapped himself. He hated that modern populous crap, fair dinkum classical all the way, plus Trad and Dixie jazz! And radio national on Sundays with the Goons…Neddie Seagoon, Eccles, Moriaty, & Bluebottle…. “You dirty, rotten swine, you! You have deaded me!”
He loved that stuff, pretty funny.
Last year, now unable to walk…needs help feeding, wears a nappy. Only recognises me for a few minutes before the lights go out.
Try to jog the memory with photos on the iPad, engages him for a few minutes, and he remembers his father, and tells me its my grandfather…so still some recognition. Must be bloody hard having those moments of lucidity, when you probably realise how much shit you are actually in. Presumably the memory is fleeting…
How the tables turn…man slowly becomes baby.
Nasty, and only getting worse.
So, what is dementia, and how is it different to Alzheimer’s?
Dementia is a brain disorder that affects communication and performance of daily activities and Alzheimer’s disease is a form of dementia that specifically affects parts of the brain that control thought, memory and language.
Dementia is the host, Alzheimer’s a very nasty bug!
Either way the prognosis isn’t good. There is no cure, only palliative care which can last years.
So, why Dad? Why anyone of the poor buggers in Buckland House? Why anyone?
What an undignified end to a productive life, what a waste…
Last week, shaved ‘cos he hated having his faced wiped after each mouthful. Looks pretty buggered, eyes weepy, vacant. Almost no recognition, no longer able to talk, struggling to stay awake.
Still seems to recognise my voice, or recognises it’s difference to the normal hum in here. Still looks at Rachael likes she’s an alien!
I’m sure he still loves seeing family and friends, he just can’t communicate his appreciation.
Pretty sure he hates having his photo taken though, certainly not going to smile….teeth gone!
I don’t think I’ll take another photo of Dad, it’s not really the memory I want of him.
Dad could go on like this for years yet, gradually getting worse, becoming bedridden, lost and lonely trapped inside a mind and body wearing out like your favourite boots. RM’s of course!!
Naturally he’s not on his own, the rate of dementia & Alzheimer’s has soared in the last 20 years as we all live longer, are better medicated and better housed. Hospice care is a runaway growth industry!
So sadly Dad is now one of this growing statistic, and we can only hope that what time he has left is as pain free (in every way) as possible.
When Mum died we all knew it was much too early…..
..with Dad, sadly, too late!
Nicely done, Bug, and much appreciated. Not sure I agree with you on Philip Nitschke, but otherwise…
Not sure i approve of all Philip Nitschke does, Charlie, but if nothing else he engages opinion and discussion.
Great piece Hugh, hope your dad is as well as can be. I’m watching my 86yo father in law who’s not in good health just hate being old, so don’t know which state I’d rather be in. Not sure Chef Pete Evan’s scientific evidence around demetia is all that sound though – he does after all claim that his diet can ‘prevent autism’ using examples that the curve in diagnosis rates correlates directly to health advice in the 70’s about high carb diets. Strangely the curve is almost exactly the same as sales of organic food. Go figure.
I agree about Pete Evans, Georgi. Was being a bit flippant with my comments on him.
He does push the Palio diet, it’s almost a religion, isn’t it!
Yeah – who knew you could get chocolate cake in paleolithic times? Amazing 🙂 He seems to have a lot of fairly crazed followers as per any good religion.
Actually Hugh, in reference to Phillip N and dads wishes, I was at the house in Tolmie one day and dad was getting frustrated unable to find something and then forgetting what it was that he was meant to find when he said ” die Liz before you get like this.” Says it all really.
I read this post with tears in my eyes. I don’t know anyone who suffers from this disease and never dealt with such a person. I understand the disease through reading about it, and your description of your dad’s condition reminds me of the unbearable pain of this illness. I’m going to share something with you. You’re probably going to reject it as rubbish and laugh at me. Please, I beg you, don’t throw me under the bus as some crook or you-know-what thug in disguise. It’s not my finding, besides. Please judge it on its merit. In 1923, the very distinguished German physician and biochemist (a full time research scientist) Dr. Otto Heinrich Warburg (1883-1970) made a very significant statement in regard to disease. He said “Diseases can not survive in an alkaline body.” Please note the word “alkaline”. Dr. Warburg was awarded the Nobel Prize for physiology in 1931, and nominated for two others during World War 2. That was before the onset of the big pharmaceutical companies. Later these companies came along and we know how the pharmaceutical sector has become over the years. Our body is in an alkaline or acid state depending on the nature of our diet. Every food item is either an alkaline or acid one, according to the PH balance. Dr. Warburg’s biochemical research findings can help us here. Is there anyone who applies these biochemical research findings in such a way that we can benefit from them? Yes, but here’s where someone might want to throw me under a bus. Over the last twenty-eight years Dr. Sebi (of Dr. Sebi’s Research Institute) has been curing all diseases (including the so-called incurable ones) by applying the biochemical research findings of Dr. Warburg. He does this using very potent all-alkaline herbs, and having patients follow an all-alkaline diet. Dr. Sebi can cure your dad completely in weeks. Please research Dr. Otto Heinrich Warburg, look up Dr. Sebi on YouTube, and visit Dr. Sebi’s website at: http://www.drsebiscellfood.com .
Oh, when you visit Dr. Sebi’s website please peruse the whole site, and remember to read “Methodology”. Phone, email or visit one of Dr. Sebi’s centers in the US if you need any help.