To think that the reality of Dementia is misunderstood

[TheMustressMhor]

I think that most people cannot understand what the real day-to-day challenges are for relatives of people with dementia.

Until your elderly relative is diagnosed with this, you probably only have a hazy idea of the realities.

It has only been in the recent past that dementia has been given as a cause of death on death certificates.

AIBU to think we need to educate ourselves more?

I've only skimmed this thread and I'm going to hide it now, but those posters who are dismissing the OP and the effects of dementia (or Altzheimers) really have No Fucking Clue what it is like for sufferers and relatives. No Fucking Clue. Yes, other diseases are awful too but this is not a fucking race to the bottom. This is a post about the special and particular instance of dementia and its Pretty Fucking Awful and I say that as a carer who has lived with this for Ten Fucking Years now in respect to both parents. It's Hell.

My mother was on Aricept - it made no difference that I could see.

@YetAnotherSpartacus, like you I’m absolutely appalled at some of the trite and dismissive crap on this thread. Before you go, please know that some of us have been where you are and we understand the hell you’re enduring. 💐

Who is dismissing tge op? Hopefully not me? I know how shit it is.
I think I need to leave this thread too.

@YetAnotherSpartacus

I understand how you feel. I am also surprised by the PP who do not understand the devastation wreaked by dementia in people's lives.

I'm so sorry you feel that you need too hide the thread.

CleopatraTomato I have not seen any benefit to patients on Aricept either.

Some relatives are afraid to stop it though, in case it is making a difference.

I think that many people don't understand that it isn't a cure and it doesn't stop the dementia from progressing.

And there are a lot of spurious "cures" available online.

I remember one woman who was convinced by the Coconut Cure. She added it to everything her mother ate. it was heartbreaking to see her taken in like this.

Actually do you know what. The suggestion to give me head a shake is a bit too far for me. I'm out. I watched my lovely grandma being eaten up from the inside by this disease. I watched her revert to infancy. I watched her confusion and paranoia as she assumed her nearest and dearest were stealing from her and hurting her. I listened to her tell me I looked a bit like a girl she used to know.
And I know that I've only scraped the surface. Her husband, my mum and her sister had the worst of it. And I've probably got it to come with my mum and then to look forward to myself. Forgive me if I'd rather put it out of my mind ofr as long as possible. In the meantime I'm out. I don't need this

The likelihood is that dementia results from the interaction of multiple factors, some of them inherant/genetic, others environmental/ lifestyle
no one single cause

Exactly. I've never said otherwise.

But to suggest some risk factors for a disease is not blaming anyone. Ff give your own head a "shake" if that's the sort of language you use and then go away.

Not you bom. Sorry. I'm getting worked up.

StealthPolarBear

I think it's possible that some people have misunderstood what you said.

phoenix1404

*I also think that many, if not most relatives struggle with the concept of telling lies to their parents in order to keep them happy.

For example - to tell your mother that her parents are still alive and that you'll take her to visit them tomorrow will undoubtedly make your mother happy. She will not remember that you made this promise anyway, so why not just say it, to calm her down?*

That totally resonate with me
My mother has dementia and my father will
Argue with her about all sorts of stuff
Why he won’t just agree to keep the peace I don’t know it’s madness on his part as if he agreed with her then she shuts up but he won’t so she carries on arguing
I just agree with her and she’s happy

Stealth😊 it's ok
it might be useful to look at the causes in terms of 'necessary and sufficient conditions'?

This sounds awful to say but just months before my mum was diagnosed with dementia she was diagnosed with very aggressive cancer and given six weeks to live
They treated her and she is here two years later absolutely fine and healthy but she has Alzheimer’s and Dementia and I do wonder if the quality of life she has now was it worth saving her life 2 years ago
I’m glad she is still here but she has a DNR on her medical notes now
It’s a cruel disease and it wrecks not only the persons life but so many others as well

Very few diseases have necessary or sufficient cauaes
Fetal alcohol syndrome is one that pops into mind.
The sorts of things that get you in your fifties, sixties and seventies usually have multiple causes, none are necessary or sufficient

It could be that this is just to do with the degeneration of an organ, just as the liver degenerates and can develop cirrhosis, so the brain also can degenerate.

@Itsjustmee, it resonates with me too. When my mum said her mother would be worried about her and wonder where she was, I said she knew where she was and that she was safe. What would have been the point of telling her that her mother had been dead for nearly 40 years?

The lying thing is difficult. I found there were two factors:
Before the dementia was too severe and I was still visiting Mum and organizing things for her I had to know what was true or not. Did the Dr really cancel the appointment? Did she really leave her handbag in the supermarket? Is my cousin really in hospital? Did she really eat yesterday?

Next, if you lie and say "Yes Mum, I'm sorry I didn't turn up yesterday to take you out as I promised", or "I'm sorry I left you on your own at the hospital last week and you had to walk five miles home alone in the dark" - then you are admitting that any semblance of a true relationship has gone. That is a hard leap to take.

So what would you say in the situation I was in @CleopatraTomato?

My Mum has Lewy Body, her two sisters have/had Alzheimers.
Mum has had Lewy now for nearly 8 years. She is incontinent, can't wash or care for herself, cant feed herself, can't walk or stand without help, is incomprehensible when she talks. She doesn't recognise me and only ocassionally recognises my Dad. She has been in a care home for the past two years when it became impossible for Dad to care for her any more. He too is now showing the early signs of dementia.
I expect to have it too, but I'm determined I'm not going to live with it, nor will I put my children through it.

I expect to have it too, but I'm determined I'm not going to live with it, nor will I put my children through it.

I think this is a very good point that spanieleyes makes.

We who have seen what it does, do not want to inflict that on our children.

It is our children who will have to deal with our dementia. We ourselves will not be aware that we have it.

Alsohuman - I would say exactly as you said. Once you pass the point where you literally have to lie then there is no more choice. It's crossing that point that I found so hard.

Once my mum was so ill she was in hospital and later a care home I lied to her every day - told her I didn't have the car with me but would pick her up in the morning and take her home. I told her I'd seen her, (long dead), mother yesterday and not to worry about not being able to visit this week. I told her I was looking after her money to keep it safe just while she was in hospital and she'd get it back later. I told her my (long dead) father was fine and coping while she was in "hospital".

I didn't mean to be hurtful with my earlier post.

@CleopatraTomato

I lied with great abandon to all my patients. Every single one.

I looked after a lady whose dog had died seven years previously. I can remember her asking me where the dog was - so I said he was at the vet's overnight.

Cue anxious old lady asking what was wrong. So I said it was for a diabetes check. (The dog had had diabetes so the lady was fine with this.)

Cue anxious old lady asking when the dog was coming home. So I phoned DH and told him he was (temporarily) the vet. Handed the phone to the lady and DH told her the dog would be coming home the next day.

The lady was satisfied with this and the conversation moved on to where the sherry bottle was (another topic which was done to death.)

My point is that you need to buy in to people's delusions to keep them happy.

I absolutely take your point though - there is a line which has to be crossed. People with dementia are not all at the stage where they will be satisfied with kind lies and it is hard to know what to do for the best.

Generally though - I would say that lying to keep them happy is definitely the best thing to do.

DH also "became" a farmer who had a cockerel which the lady wanted at some point. He got used to being whoever the lady needed to keep her happy.

And DD once had to pretend to be a lady's son's secretary. The lady wondered why her son hadn't been to see her that day. (He had but she had forgotten.) So I told her that he had been delayed on business elsewhere and had to stay the night. DD pretended to be his secretary and made up a story in which he was staying at a hotel overnight on business.

When I think back on all these lies do I feel guilty? No. I would be feeling guilty if I had spent hours telling patients that their dogs were dead, that their sons had visited. It is cruel to do this. It is kind to tell downright lies.