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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

to be terrified of dementia

212 replies

calmseeker · 06/03/2015 19:48

I am in my mid fifties and my short term memory has deteriorated. Sometimes, possibly like people of my age I go to get something in another room and think 'what was it I wanted?' or I open the fridge instead or a cupboard then realise what I've done. I look it up and the internet (reliable sites) say its a normal part of aging. But every other day there seems to be 'new' things that predispose one to dementia - antihistamines (older versions), concussion, lack of sleep, solitariness and so the list goes on, Is anybody else terrified........ The worse thing is there is no cure and the disease is very scary.....

OP posts:

MarianneSolong · 08/03/2015 18:43

I think the main issue is that we just live longer. We are programmed to wear out. So they can give us pacemakers or cure some cancers or keep us going physically. But our brains get old and knackered and change.

Ultimately we can't cheat ageing or death. We can try to eat fruit and veg, take exercise, keep mentally active and avoid overdoing alcohol, nicotine and recreational drugs.

And hope for the best.

UptownFlunk · 08/03/2015 18:55

As I've mentioned upthread my grandmother ate the healthiest diet I've ever come across - she was a vegetarian and loathed sugar. She didn't smoke or drink and read academic tracts and did cryptic crosswords. She was a great believer in natural medicine and rarely took any tablets - for example she took vitamin E tablets when going through the menopause. She is in the grip of severe dementia, there is no history of it in our family.

SuggestmeaUsername · 08/03/2015 19:40

I think a healthy lifestyle such as exercising and eating healthily may help to reduce the chances of getting dementia but it's not going to eradicate the chances of getting it completely. I guess sometimes it's just the luck of the draw.

I believe alzheimers has something to do with a protein that causes cells in the brain to turn to mush and that just gets worse over time

BeyondRepair · 08/03/2015 20:12

yes i worry i will get it but more than that having to live through it till death worries me more, would be much happier if i could stipulate what level of loss I can choose to die at, for instance, stop recognising all family, cant toilet etc, dont know where I am - honestly kill me!

BeyondRepair · 08/03/2015 20:13

why oh why are we allowing,making people live with this? they are so vulnerable we cannot care for them, its riduculous.

we should all be made to say - what level we are happy to get too, them - go.

Suzannewithaplan · 08/03/2015 20:34

BeyondRepair, I agree that would be a huge comfort, knowing that you could chose to peacefully slip away if suffering from an illness or condition where your quality of life was compromised to a severe extent.

It would be a complex thing to actually manage, and there would be need to be various safeguards.
Quite possibly if cases of dementia rise to an unmanageable level we will have to start offering people an escape from what must surely be hellish?

GnomeDePlume · 08/03/2015 20:39

BeyondRepair but when do you ask the question? Up until a few days ago DPiL were happily bumbling along. It is only since a couple of weeks ago that the whole house of cards has fallen down.

This is why the lasting power of attorney is so important.

If you want to do this, here is a link:

www.gov.uk/power-of-attorney/overview

PacificDogwood · 08/03/2015 21:29

Yes, do plan forward: PoA can only be granted by the grantee which mean that you have to be able to demonstrate that you know what you are agreeing to.
Once cognitive function has declined sufficiently to make that difficult to prove, it gets much more difficult with guardianship having to go through the courts (more costly too to set up).

Wrt assissted suicide: I cannot see how it could ever be legislated for in such a way that misuse and abuse could be reliably prevented - I am so glad that we live in a country in which suicide is not illegal and I think the same should be said for assisted suicide. Active euthanasia is even more difficult to set a law up for that would prevent cases of v vulnerable people being 'bumped off' by their nearest and dearest for whatever selfish reasons

Dowser · 08/03/2015 23:08

Thank you Gnome. I do appreciate that.

I know there are guarantees and uptown flunk has flung a spanner into the works with her gran :-(

Peat are you referring to eat right for your blood type by dadamo.

ppeatfruit · 09/03/2015 08:26

Yes Dowser There are many naysayers (of course) but if you approach it with an open mind and check out the websites it does save a lot of people.

ppeatfruit · 09/03/2015 08:38

Sorry I didn't finish that post properly. It can (not on it's own IME) help obesity,and a lot of chronic illnesses.

Essential fatty acids are important in our diets too. I have olive oil instead of butter and that is amazing.

Suzannewithaplan · 09/03/2015 08:57

Dowser, Uptownflunks one example is neither here nor there, a sample of one is statistically irrelevant.
The statistics still shows a correlation between a healthy lifestyle and not getting dementia, if you want to decrease your chances all you can do is try and align your lifestyle with what the studies show to be associated with lower risk?

VeryAgedParent · 09/03/2015 09:11

I am in my early 60's. My very best friend for 40 years is now in a "home" after developing dementia before she was due to retire.
She had a very high powered job being a partner in a top legal firm, and when she started to not know the names for things decided she needed to rest stop working quite so hard, and retire early.
She would/could not accept what everyone around her could see what was happening to her, making it very difficult for her DH to get her help and a proper diagnosis.
She is a year older than me, does not recognise me, has to be fed and reminded to go to the toilet. Her DH has been magnificent but my heart breaks for him as he is still so patient, kind and gentle with her even though she has child like tantrums and can be awful to him.
I have in effect lost my friend, who I can no longer call up for a chat or to tell her all my problems, I miss her so very much..........
She is not aware how much all her friends love her and miss her, it breaks my heart to see her now.

Dowser · 09/03/2015 10:13

Sorry to hear that VAP . That puts us at the same age. I lost my friend of 60 years last year. Not too dementia. In fact her memory was spot on perfect when it came to remembering things we did in our youth, which family lived in which house as we grew up in the same street for the first 20 years. So much better than mine. It's very sad to lose that link with your childhood. In fact her mum is 94 and she has a fantastic memory too. She knew exactly which part of the street my daughter lived as she delivered the milk there about 70 years ago. I have a job remembering through which maze of streets is the correct route.
It's so sad to see the gradual or sudden deterioration .

Yes Peat my homeopath/ doctor sets a lot of store by Peter dadamo.im blood group 0 , the meat eater of the four groups, which is good because I do like animal protein, although not in Hugh portions

We use a lot of coconut oil in cooking or olive oil and never spreads. I use coconut oil as a base in the deoderant and face creams imake and also in toothpaste I occasionally use. It's good for oil pulling as well.

I have virtually no dairy. A bit of kefir each day, very little cheese. I don't eat cereal apart from the occasional oat cake. Very very occasionally I make spelt bread.

I just do what I can for my general health.

BeyondRepair · 09/03/2015 11:28

Quite possibly if cases of dementia rise to an unmanageable level we will have to start offering people an escape from what must surely be hellish?

I dont know if its hellish for the person with it, but what I do know from having two GP with it, and working with people with it ( short time) is how utterly vulnerable they are.

Its a severe mental illness and yet you more than likely have very low paid staff who are simply not equipped with training or even understanding of the condition, and its very frustrating.

Trying to get someone into bed when they think they are on a boat and need saving, and your boss is getting shitty as there are another ten to get to bed, and your shift is finishing. Many with dementia are violent too, evoking a violent response.

I just dont think we can look after people with dementia safely and its a main reason why, I would not my life and body placed in such hands. I would not be safe.

BeyondRepair · 09/03/2015 11:29

BeyondRepair but when do you ask the question? Up until a few days ago DPiL were happily bumbling along. It is only since a couple of weeks ago that the whole house of cards has fallen down.

well if my dh and family were visiting and I did not know them, for say 6 months, its time for me to go.

even 6 months for me would be too long in old folks home.

bumbleymummy · 09/03/2015 12:30

There is increased funding for research in this area and a few new treatments currently in development. Try not to worry - easier said than done I know!

Gruntfuttock · 09/03/2015 12:35

I think I'm going to hide this thread. The subject is too terrifying. The prospect of dementia is like waiting for a bomb to go off and there's no knowing when, or if, it will happen and nothing anyone can do about it. I already suffer from depression, I don't want to add severe anxiety on top of that.

ilovesooty · 09/03/2015 12:40

I went to see my mum yesterday. It was heartbreaking. She seems to have gone past the aggressive stage but said "Now how about getting me home" and I had to explain again why that isn't possible. She has no interest in the world about her or any of the things we used to talk about. And the home has been riddled with D&V and she couldn't keep more than a glass of water down.
I can't bear the thought of being like that myself and it's everything she never wanted to happen for her.

BeyondRepair · 09/03/2015 12:52

Its maddness she has to have this happen to her ilove.

we should be able to choose for ourselves.

GnomeDePlume · 09/03/2015 13:16

BeyondRepair, I'm not arguing with you but my question still remains, when do you ask the question? As a healthy independent adult the idea of going into a home may sound horrific but if it is just the next step in a steady decline how many people would then say 'enough's enough'?

We are about to tackle the issue of getting a LPA in place for my mother. Difficulty is that she may be unwilling as in her mind she doesnt need it as she is totally fine. When she actually needs it will be too late as at that point she wont be in a position to set it up.

We will be damned if we do and damned if we dont.

ppeatfruit · 09/03/2015 13:18

Dowser Congratulations on doing the best you can (so many people don't bother). I'm an A type so can eat some fish and a tiny bit of organic white meat which suits me too! Loads of veg. But no deadly nightshade veg. No dairy apart from a bit of goats cheese. I have organic soya milk and almond milk etc.

BeyondRepair · 09/03/2015 14:26

gnome I dont know - for me it would be when i can longer recongise my family, when to put this all in place>? now? age 40?

ilovesooty · 09/03/2015 14:54

My mother recognises me but I think if she'd had the choice she'd have gone to Dignitas when she was first diagnosed with dementia and lost her dignity.

ilovesooty · 09/03/2015 14:56

In fact I'm going to do the living will thing which I think is called something else now and start the process of putting my affairs in order over the next year or so. No way am I ending up like my mother.

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