Alzheimers. Terry Pratcett.

Has anyone else read the article in the Times “alzheimers or cancer which is the better way to die”
I sympathise with Mr Pratcett’s diagnosis of alzhemers. The generous donation he has contributed to the research into this disease is admirable.
It really puts my back up however when people bang on about how cancer and heart disease get “X” amount of money for research to the detriment (spelling?) of other illnesses.
In particular the article says it’s a much more easy death to die of cancer than dementia. Perhaps it is if you are very elderly, but so many people die young of cancer how can these losses be considered a better way to die.
I wonder if Mr Pratcett ever gave a second thought to alzheimers research before he was diagnosed. Or was he like the rest of us who thought we’d live forever until we found out with a shock that we would’nt!
Apologies in advance if I’ve upset anyone but I’m really sick of this cancer research bashing…
Just needed to vent you know how it is…
Best Wishes All
Linda

I haven’t read the Times article but I did see interview with Terry Pratchett last week and have a good deal of sympathy with what he says. He likens the ‘shame’ attached to Alzheimers to the shame associated with cancer 30 years ago and I think he is right.

I also think that ghastly as cancer is, and scared as I am of what will happen as I die of cancer, that yes of course death from other ghastly disaeses can be ‘as bad’ or ‘worse’…but we shouldn’t make comparisons. No amount of ‘palliative care’ can help some of us to die ‘good deaths’ which is why I so strongly support a change in the law on assisted dying.

In general I don’t like ‘battle’ metaphors about any illness, but when I saw Terry Pratchett on TV last week saying he wanted to ‘fight’ for change in attitudes and funding for Alzheimers I wanted to cheer.

Alzheimers probably doesn’t kill very young people as cancer can, but the young don’t have a monopoly on suffering and premature death. A friend of a friend of mine…about my age 59…died of early on set Alzheimers a few weeks ago.

I’m not upset by your post Linda…I welcome the debate…but don’t think I agree with you. Will read the Times article.

best wishes

Jane

My father died of Dementia in 2006 and watching him suffer with that was far worse than anything I am going through, no illness is good but I have found that Cancer gets more sympathy and understanding than dementia or Alzheimers.

Val

I am with Val on this one. My father died of vascular dementia in October 2005, one year before I was diagnosed with BC. I have also found that watching my father going down the route of not knowing anyone, losing all his faculties and becoming doubly incontinent over a period of 2 years in care far worse than anything I have had to endure over the past 14 months. My dad had no voice in the few months before his death, he was just able to stare and make faces - in actual fact he reminded me of that painting The Scream every time I visited.

My dad was a very strong minded WW2 veteran who used to say whatever life dealt you, you had to face up to it and get on with it. Thankfully, that rubbed off on me and I was given his strength. When I was at my worst last year I used to hear my dad saying “you have to trust the doctors and keep going”. I live in his old house and he was very much here with me all the way through my journey. I dreamt I was telling him I was ill and would perhaps be joining him soon and he said to me “don’t be daft, you will not be visiting me for a very long time”. I also dreamt of his late sister phoning me from Ireland to say my dad had told her I wasn’t very well, but that everything would be OK. All this has kept me going. Dementia is every bit as much a living hell as cancer in my view and I donate to Alzheimers charities as much as cancer ones.

My sympathy to you Val, often the suffering is felt by the carers of a sufferer on an equal or greater level. You are so right, any type of ‘mental’ illness is often brushed under the carpet by society.

I would like to think Mr Pratchett believes an equal amount of time and money should be spent on alzheimers as is spent on cancer or heart disease. It should not matter how many people, old or young, die from a particular condition, if it is potentially terminal then it deserves to be researched for a cure, but I suppose there is not an open pit of funds available. I also agree the law on assissted suicide should be changed.

It is a shame more is not done to prevent road deaths, especially drink, drug or mobile phone related. To save the many thousands of lives lost each year on the roads, does not need research, just tougher laws and penalties would be a start. But hey, don’t get me started on that one!

Good debate.

J.

Whilst I have every sympathy with Mr Pratchett in his position, the fact is that many more of us get cancer than Alzheimers. I assume this is why cancer receives much more funding. He was quoted as saying that he envied his father dying of cancer at 86. I’m sure we all do. 86 is a good age to reach. I wonder if he envies me getting cancer at 44?

Until we have a life threatening disease ourselves or have personal knowledge of watching someone suffer from one, then, I think we only ever have a superficial media portrayed knowledge of that disease. Personally, I applaud anyone who is willing to stand up and make headlines about their disease.

I recently watched a close friend nurse her dying husband through Motor Neurone Disease, which is another less publicised disease.

I hate to see one disease being compared to another, each in their own way is horrendous.
I do know that mental health funding is seen as low priority and a poor relation when compared to the ‘big charities’
In an ideal world there would be no need to switch research funding for cancer or heart disease to alzheimers or other mentally related illnesses, funding could be upped and matched, but then we don’t live in an ideal world because our leaders choose to spend the public purse in other ways.I’d better stop here and leave that for another debate.

What puzzles me is where the whole notion of ‘heroic cancer battles’ originated. I have cancer , I possess no heroic qualities whatsoever and half the time I’m too tired to even think about battling.

I did think Dr Guy Brown’s argument was interesting. With medical advances prolonging life there is no research at all going into the ‘quality of life expectancy’ and thats a scary minefield for the future in which alzheimers may well over take cancer and heart disease.

Good debate, lots of interesting twists and turns to it.
Trish

Why heroic cancer battles?:

In response to your question Trish I think there were several different pressures in the 1980s which turned cancer from a disease of shame, into one where brave warriors battled for triumphant survivorship,. Among these was the publication of the book Love Medicine and Miracles by Bernie Siegal in 1986. Seigal identified ‘exceptional’ patients who he argued could change the course of their disase by adopting the right kind of positive battling attitude.

Siegal’s book has had an enormous influence on the development of a particular kind of cancer culture. His book was written at a time when doctors could rightly be criticised for their lack of compasion, and for their failures to see the holistic needs of people with cnacer, but I think overall what he wrote has had a very detremental influence on perceptions of living with cancer.

There are other reasons too for those battle metaphors…and I think Samantha King identifies some of them in Pink Ribbons Inc.

Sorry going off the point of Alzheimers a bit.

Jane

Having had a grandparent slip downhill with dementia for many years until his death at 94, and then in my 30s worked in a nursing home for Alzheimers patients for a while, I believe its effects on the family are very different from cancer - and I have lost too many relations to C as well, though none younger than mid-60s. Dementia is a living bereavement. I firmly believe that caring for my grandfather, who was physically very strong and wilful, though totally unaware of the consequences of his extraordinary and often dangerous behaviour, took a far greater toll on my mother over the years than dealing with terminal cancer in my dear father. Of course cancer in every form has a profound effect mentally and emotionally, but the apparent lack of a physical ‘illness’ that is characteristic of Alzheimers seems to cause terrible distress to the family of the sufferer, whilst he (or she) can seem totally unaware of the enormous changes that are taking place. Better? Worse? There are no right answers, only personal experiences and opinions are formed by these.

My father died of Alzheimers and I would rather die of cancer than have the horrible lingering death that he had with the terrible loss of dignity that he suffered. In fact a lot of the suffering was endured by my mother rather than him. Indeed, looking after him resulted in the loss of her freedom, her health and life! A month after she had reluctantly allowed him to go into a home, she had a heart attack and nearly died. Within a year or two she developed cancer and died. She sacrificed her own health to look after him. She died 6 months after my dad. It is a living bereavement. One very sad aspect of it is that it overshadowed the many years of happy marriage they had together. All she could feel was frustration and anger and guilt.
I find it ridiculous that they will not prescribe a drug that can slow down the deterioration because of cost when the cost of care is so high. Sorry if this has turned into a rant but I my mum was my mum till the day she died. I lost my dad 10 years before he did.
Kelley

Kelley, your last couple of lines sum it up so accurately - I understand exactly what you mean. Thank you for sharing xxx

I have read the article and like most contraversial discussions, I agree with some of it and disagree with other bits. I think the doctor quoted is talking about the process of dying rather than death itself, which we all know is inevitable. Also, Alzheimers is more likely to affect older people although I am aware it can occur in young people, whereas cancer and heart disease can affect any age. This may be one of the reasons more money is targetted at these diseases, along with the fact that more people are affected. Cancer is also a disease that can be cured, leaving the patient with a normal healthy quality of life. My son had cancer when 13 months old and after several years of gruelling chemo surgery and radiotherapy is now a strapping healthy 16 year old. Rightly or wrongly, people are more likely to want to support areas of research that do affect children and young people. From my personal experience of cancer, quality of life can be reasonably good until the last few weeks, whereas this is not the case in Alzheimers where terrible suffering can go on for years. If only there was an infiinite amount of money all these horrible diseases could be thoroughly researched. Until then, I guess the powers that be have to make ethical decisions based on the greater good theory.

Cathy