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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
KikitheKitKat · 06/03/2015 22:51

But Doi as it happens gradually it would be hard to pinpoint when your family should give up on you.

WayfaringStranger · 06/03/2015 22:52

" I worked for a Dr who's Father had dementia. He always said, "if you know you've forgotten something then you're OK. Dementia patients don't know they've forgotten"."

This isn't true at all, I'm afraid. In the early to mid stages, people are often aware of their short term memory recall problems. Also, dementia is so much more than forgetting.

OP, I work with dementia service users and I understand your fears.

Doilooklikeatourist · 06/03/2015 22:57

Dad has Lewis Body dementia , and this is not gradual
There are 3 types of dementia , Alzheimer's , vascular and Lewis Body

So , yes I still say , put me in a home

AWholeLottaNosy · 06/03/2015 22:59

I totally understand your fears too. My dad has it, I looked after him for a year. He didn't know what time, day, year it was. He couldn't read, listen to music or follow a plot on TV. He'd ask the same questions again and again. He'd get up in the middle of the night and wander round the house, it was very hard to witness and cope with. He's now in a home and I would rather kill myself than end up like that. My mum also had a severe stroke at the age of 77 which left her paralysed, unable to speak or swallow food. She was in a bed in a nursing home for the next 4 years unable to do anything for herself. She passed away last year. I'm terrified of ending up like either of them. I'm 50 now and think about it a lot.

engeika · 06/03/2015 23:08

I understand your fears too but know that you must try to focus on what is good now. (I tend to be a worrier and when I look back and see how much time I have wasted that too is frightening)

My Mum has it. She is struggling to cope but not advanced yet. She cannot follow a conversation or shop or cook or eat anything but biscuits any more. She is difficult and confabulates so impossible to know what is true and what isn't. She has lost all her friends. I dread the next stage.

I have told my DD, who is sensible, what to do if I get it. Dignitas. If I suspect I have the illness I will write a living will. It is that serious.

seaoflove · 06/03/2015 23:14

I live in hope that assisted suicide will one day be legal. I've been watching my grandmother deteriorate with dementia (and she still had a long way to go...) and the idea of losing my mind so slowly and so completely is really frightening. I would rather die at a time of my choosing than have my mind disintegrate gradually over years and years.

Gruntfuttock · 06/03/2015 23:15

I'm terrified of it too. I recently turned 61 and am so scared about what is ahead as it all seems to be negative. I'm very frightened of the prospect of my husband dying before me (he's 8½ years older), our daughter leaving home (yes, I know that's a good thing for her - but I worry about her and I'll miss her like hell) and not least, getting dementia or my husband getting dementia.

I'd like to think I'll be like my mother in old age. She's 95 next month and is 100% 'all there'. She lives alone in her own flat (not sheltered) and is always dressed beautifully with hair and makeup done. I'll probably end up like her mother, not recognising anyone and thinking I'm a small child who 'lives with my mum'. It really is a horrifying and terrifying prospect. I have had lifelong severe depression (thank goodness for anti-depressants) and do tend to worry a lot as they're all I have (no friends or other family)

WintersDayTOWIE · 06/03/2015 23:15

I buried my mother in law today who died of dementia. Well, of course, she didn't die of dementia, she died of various illnesses which caused her death, but ultimately it was this terrible terrible disease which took her and her mind. Today, though, we remembered her how she was - a funny lively loving brave and strong women who loved her sons with a passion. I'll miss her, but I am glad she's finally at peace after a horrendous couple of years.

I couldn't bear it if my children one day see me in a similar state. It is a terrible illness and I think a ticking time bomb for future generations as more have to look after their parents in such a terrible condition.

Gruntfuttock · 06/03/2015 23:18

engeika will Dignitas help in cases of dementia? I thought it was only for people with terminal physical illness. It would be such a massive relief if I knew that I could be helped to die if I got dementia.

ilovemargaretatwood8931 · 06/03/2015 23:33

I understand your fears OP. I share them.

I wanted to add, I think it's too simplistic to say that it is harder to watch someone with dementia than being a person with dementia. The people I've known (and cared for) have varied significantly, in terms of how frightened and depressed they are. Some have been fairly 'content' and their relatives/ carers do suffer more (though it's hard to quantify that), but others have been in a state which I can only describe as like living a nightmare, complete with terrifying delusions, extreme agitation, and deep depression. This is undoubtedly awful for their families and very, very challenging for carers, but the sheer horror of living that nightmare is relentless and I don't think it should be underestimated. It just feels a little too easy, and comforting perhaps (?), to assume that it's worse to watch than to go through. I don't mean to cause offence by saying that, I just worry that people with dementia do often have their experiences and feelings underestimated. It is truly frightening for some people.

Sorry OP, not the most positive post. Sad I think it's very normal to be afraid of illness and loss of our independence and capabilities though.

engeika · 06/03/2015 23:52

Hi Grunt - yes Dignitas will do it. See link. But you have to be in the early stages. Once you are no longer in a condition to make the decision it would be a different matter.

I think if you put it in writing before diagnosis, with a solicitor present, or very early on after diagnosis it would be ok.

It sounds terrible talking like this but I see my mother and many of my friends who are caring for elderly parents and the accounts of what people are going through on MN and my mind is very clear on this.

www.independent.co.uk/news/uk/home-news/first-briton-ends-life-through-assisted-suicide-at-dignitas-because-of-dementia-8638022.html

Gruntfuttock · 07/03/2015 00:12

Thank you so much engeika, I can't tell you what a relief that is. I know I should've looked for the info myself btw, I'm not usually so helpless or clueless. I have read the article in your link and hope that in future assisted suicide will become more widely available and accepted so long as certain criteria are met.

Gruntfuttock · 07/03/2015 00:24

I just want to say that Dignity in dying has a lot of useful information.

GiddyOnZackHunt · 07/03/2015 00:37

My wonderful grandmother had dementia. It was freaky to watch her growing down as my babies grew up. I am very happy that the last time I saw her and held her, she thought I was her mother and we sang softly to each other.
However it is a cruel thing and caring for a 'healthy' dementia patient is enormously hard. My nan exhibited slightly odd behaviour all her adult life and I do wonder if there are some signs in advance. My mum frets about it but she's in her 70s and very sharp. My dad and O have a slightly jokey pact that when he can't do the Guardian crossword at all then I'm booking the flights to Switzerland.

Gruntfuttock · 07/03/2015 00:42

GiddyOnZackHunt I do wonder whether keeping the brain working may make a difference. My afore-mentioned mother (95 next month) does a cryptic crossword everyday and is an avid reader.

GettingFiggyWithIt · 07/03/2015 00:49

I share your fears OP as I got paranoid after reading about a link with sleep. I have been sleep deprived for four years and then when it came up that Maggie Thatcher had dementia, famous for getting by on five hours a night...then I read Still Alice (years before the film) so I told dp my fears, take me to Belgium or Geneva or sthg, I will write it in a living will and he patted me condescendingly while informing me that in all likelihood the cancer/heart attack/somebody throttling me is likely to get me first... scrubs rang and want their joke back

GiddyOnZackHunt · 07/03/2015 00:59

grunt I do bizarrely worry more about my dad but I think he doesn't have dementia. He's been very sharp for so long but has slowed down a lot and it's strange but not necessarily dementia. My nan was very different and I think there had been masking for years. With my dad I think it's not socialising, having been physically unwell and possibly Aspergers. My DD has been identified as probably ASD and we’re looking at our families in a new light!
With my nan she was always a bit irrational and childlike. Her way or a massive sulk. She adored children and was the perfect granny for children. She was a bit random and awe struck by us being adults.

Roonerspism · 07/03/2015 01:02

This thread makes me pray that assisted suicide is legalised in this country...

I don't worry about dementia per se as genetics in my family are so crap that something else will get me before dementia has the chance to.

I think all any of us can do is to reduce our risk factors as much as we can

Tobyjugg · 07/03/2015 01:15

Welcome to the club OP. I'm the same age as you (give or take) and have the same problem. Going into a room and forgetting what I wanted is a regular thing. Like you I worried, but I was told that so long as you are aware that you have forgotten whatever it was then that's normal ageing. Dementia is when you can't/don't realise you have had a sort term memory blip.

Original poster
calmseeker · 07/03/2015 06:48

It is a scary think and no I don't particularly spend my time obsessing about it but it is something that is terribly frightening. I think writing a living will might give me some sort of 'reassurance' .

OP posts:
PacificDogwood · 07/03/2015 07:17

WintersDay, people do die of dementia - it is often overlooked that it is both a cognitive AND physical decline Sad

ragged · 07/03/2015 07:57

My mother was obsessed with assisted suicide. So she could choose that rather than a long drawn out death from cancer.

Lagoonablue · 07/03/2015 08:08

Yes. I have been scared of this lately. I am 50 and my memory for words has worsened. I can't remember names very well either. I am hoping it is just memory loss rather than anything more.

spanieleyes · 07/03/2015 08:50

My two maternal aunts had dementia and my mother now has it. There is no way I would want to put my children through what we are going through now. Old Folks home for me!

goshdarnit · 07/03/2015 09:15

Dementia is indeed a dreadful way to end your life, and I too am the daughter of a man who had all his dignity snatched away from him by Lewy body dementia.
But, although the fear of dementia is there, I will not let it stop me living my life now. None of us know what isaround the corner, I could be hit by a bus tomorrow, so I have to live for today. Live as well as we can and try not to let fears for the future overwhelm us.