Lewy Bodies - extremely fast decline, and just need somewhere safe to release.

[RedOnHerHedd]

Hi all, my grandad was diagnosed with Alzheimer's disease some years ago. Him and my late nan brought me up, so he's not just my grandad. I've always regarded him as my dad.

I initially thought the diagnosis was wrong and that he had Lewy Bodies because of his mobility and hallucinations.

Anyway, a couple of months ago he had a fall and ended up being checked over in hospital. At this point he was still walking and had a carer twice a day. He was found to be ok and sent home. Over the following week he started to decline rapidly. The GP suspected a bleed on the brain and he was admitted to hospital. There was no bleed.

He's still in hospital and has deteriorated very rapidly. It has now been decided that it is Lewy Bodies. Just over a week ago he was still managing to walk to the toilet with the assistance of a nurse and was still continent. Now, he is unable to walk, stand, feed himself, drink for himself, and last night was doubly incontinent. I can hardly understand a word he speaks now.

I hate seeing him like this. The worse thing is, he's still aware of what's happening to him. He's completely tormented by this horrific disease.

The hospital he is in is absolutely outstanding and the staff are fantastic. They are an absolute credit to our NHS. I go every day to feed him his food. Sometimes he even forgets how to swallow.

I just wish he didn't have to suffer like this. I just hope that if I ever get dementia, that by that time there will be something I can take to take me out of it. I wouldn't want to be kept alive like that. He's fed up, petrified and doesn't even know where he is. It's so cruel.

It's been a steady, slow decline for about 5 or 6 years and now over the last two months he's just gone downhill so fast.

I don't even know why I'm writing this. I just feel like I have to write it down. Thanks if anyone reads this.

[idontlikealdi]

I watched my granny in law go through dementia, it's shit.

Sorry I don't have anything more constructive to say but look after yourself.

[Coldtoeswarmheart]

[RedOnHerHedd]

Yeah, it's so cruel.
Thank you both.

[Coldtoeswarmheart]

It is cruel, you're right. Horrible disease took my DUncle.

[loobylou10]

My mum has Lewy body and she has rapidly declined in the last 12 months so I understand how horrific this is. She was still working last May but is now in a residential home, hears voices, has hallucinations and can't remember what she had for her lunch. She has no concept of time of where she is but is still aware enough to know she is ill. I know this is going to get much worse and I can't bear it. for you X

[ChinaRose]

How is your grandad doing OP? Apologies for reigniting thread. We too are on the verge of a LBD diagnosis. DM was working last March but is becoming more and more dependent on my father. The MRI came back with something that looks like a bleed. She's seeing people who aren't there frequently. We are all terrified for the future (she is only 64)

[WhosTakingDeHorseToFrance]

So sorry, both of my grandmothers had dementia, horrible illness. Sending strength and love to you & your family

[HeyRoly]

I so understand. My nan has ever-worsening dementia and I hope to goodness that assisted suicide is legal in the future if I were to develop it myself. It's a cruel, cruel living death.

[ChinaRose]

I'm convinced this is going to be my future now. I'm only 33 but am terrified I'll follow in my mother's footsteps. I'm about to give birth to DS2 as well. I read on mayo clinic that from diagnosis to death is about 8 years - does this seem right? With my DM being only 64 i am petrified of this lasting for 10, 20 years.

[Pud2]

We are going through this with my dad now. He's had LB dementia for years but a rapid decline in the last couple of weeks. He's being tube fed in hospital, is doubly incontinent and unable to swallow or communicate. We just want him to slip away now and not suffer any more. Awful, slow death.

[ChinaRose]

I'm sorry Pud. How is he doing now? I have birth to DS2 on July 4th and thought I'd report back. On verge of a diagnosis of Alzheimers. She is still having hallucinations though. The doctors are not really interested in her. She's on no medication despite bring depressed and anxious constantly. Meanwhile my dad wants to buy a caravan so they can go away together more. Don't think he realises the seriousness of the situation.