to think that Alzheimers is not due to a lack of willpower or 'giving up'

[OrmRenewed]

Spent the weekend with an extended family with one elderly man with quite advanced Alzheimers. Everyone very kind and caring towards him. They are by and large a very driven and ambitious family. One comment upset me a bit. Talking about this old man:

"Of course, he's made my mum, and Auntie X and Uncle Y very determined not to 'give up'. It's frightened them a lot that this could happen to them"

Which implies that a. he had a choice in the matter and b. he isn't driven enough to avoid it.

Alzheimers is a disease. It isn't a life-style choice. No-one just chooses to let go of their life like that

YANBU What a twatish comment!

My mother has never enjoyed much alcohol, has always been very fit and active and has always kept her mind active. She has however suffered some very very hard blows to her life which I think may have contributed to her illness. It's all so hard to quantify, which is probably why they say as a mantra 'Positive Mental Attitude'. It's nonsense.

Yanbu but I have noticed that my relative who has dementia functions better when she is in a positive frame of mind & actively trying to remember. I know this won't always be the case as the disease gets worse but ATM in her case she is definitely more confused when she is upset about something.

With the trying to remember, I liken it to going on a car journey as a passenger chatting away & not paying attention to where you are going - not as easy to remember the route afterwards in comparison to if you were the driver. Obv trying to keep your mind active only goes so far when it comes to AD...and can't stave off the inevitable.

Yanbu. But they may just be very anxious seeing their relative so changed, and will do anything they think may help them not get it. I know a lot of people will not use deodorant with aluminum in it for example. My mil has always been extremely fit, an avid gardener, daily walker and lover of the outdoors, in excellent health, and ate well, did lot's of puzzles and always had a book on the go. She has AD now, and it surely cannot have been caused by her lifestyle. She is in her mid 70's.

Most people are better able to cope in difficult situations when they are feeling positive! Mum was diagnosed with AD in her early 60s. Whenever it appears, it is always too early. I think it's so sad to watch someone you love die from the inside, and it becomes harder to remember the person they were before the disease took hold.

Maybe I am reading it a different way, but perhaps what they meant was you never know whats going to happen to you, so live life to the full while you can.

Nothing will stop AD, but exercise, education, mental activity and socialisation can delay onset and (as I recall, but I'm not an expert) prevent other forms of dementia. So it is worth fighting in that sense.

The downside (as I recall, again I'm not an expert) is that mentally active people whose brains have suppressed symptoms can succumb very suddenly.

I loathe the language that is used with terminal illnesses - this 'battle' nonsense. Some are so weak that they choose to give in - actually have to give in. In some implied way they are made to feel like failures. There is no battle. There is only luck and good medical help. You cannot fight it.

The dementia comment is said out of fear and I think that people talk of battles for the same reason - so that they can feel there is some level of control.

I have incurable cancer and have always been very healthy in my lifestyle. As I said, there is often luck that plays a part. Although obviously it is best not to smoke cigars and eat pork pies until you explode!

I absolutely agree with you Punk, about the 'fight' etc. Hopefully, we try to live well with whatever life throws at us.

We, as humans, don't like the unknown. We don't like uncertainty, so we try to fill the void.

I have just gone through a six week course for the relatives of Alzheimer sufferers, as my mum has Alzheimers. She is between moderate and advanced.

The comment is the kind of thing I could say. It is a horrible illness that changes a persons personality to the almost unrecognisable. It is about so much more than just memory loss, but more and more absurd behaviour, hallucinations, and remembering things incorrectly, while at the same time the person in question has no self insight or awareness of how the illness affects him/her, and accuse all others of being absurd.

It is not about "Giving up", but about knowledge. They have not found a genetic link, but it seems to run in families. My grandma had it, my mum has it, her brother has it, and her now late other brother had Parkinsons, which is "in the same vein". Chances are, I will get it. It is just a question of when, and at what age.

What can I do? I can drink coffee, I can drink red wine now and then, I must eat healthily and keep in good shape, keep reading and educating myself, doing crosswords, etc, maybe learn another language, stimulate my brain by teaching. All these are suggestions what to do to prevent, or delay the onset of the illness.

I know first hand how devastating this illness is, and how it affects me as a daughter. And in turn how it affects my children. And I dont want to put my own children through what my parents unwittingly are putting me through.

If somebody with little clue about alzheimers took offence to what I say, I would say just 5 words: "Educate yourself, think, then speak"

I am a cancer patient too and I resent anyone suggesting that 'fighting it',eating differently etc would have avoided the disease.That would make it my fault that I got ill and it just wasnt!!![waves to Kurri]
Re Alzheimers it is horrific,unstoppable and leads to the place no one wants to go.I have just read a wonderful book 'Keeper' by Andrea[I think]Gillies which is an incredibly moving account of a d-i-l's struggle to care for her m-i-l with the disease.
YANBU

kurri and pranma - sending best wishes (and to everyone else).

My father went through years of dementia, and he was clever, funny, hard working, clear-thinking until it started.
The worst stage was when he knew he was on the irrevocable slide down, rather than the end when nothing mattered much any more
Like your father, Kurri, he could not fight that inward invasion.

He also grew organic vegetables which he ate all his life, hardly ever drank even a small glass of Guinness, lived in the country. I don't think it makes a lot of difference in the end.

I know strong people who have died of cancer, including a young single mother with no near relatives to take her child.
If longing to live worked, she would be alive now - no one could have more reason to be desperate to live than she did. It just doesn't work that way.

I understand why people would make that comment and like to feel they have a choice or control - it is a kind of fear of the disease but it is crass. My mum got early onset Alzheimer's at age 53 and it really annoyed me when people said things like - "oh perhaps if she had done more crosswords like me" or kept her brain "more active" - she was a young, intelligent woman - no amount of crosswords, newspaper reading or brain training could have prevented it.

I've been treated for cancer too, and I have carted around with a lot of guilt about my imperfect life. The consultants have told me that they don't know much about what causes certain kinds of disease, and likewise, there was nothing I could have done to prevent it.

My mum's personality is starting to change. She appears afraid and angry and has been going around with odd shoes on. She is also very muddled. I will look up the book you suggest, pranma

It's a type of magical thinking, really.

silent catastrophe it is available 'used' on Amazon for £1.68.It was published last year and is good on several levels-social,medical and as an 'unputdownable' read.
Good luck to you all.