End stages?

[Dino]

I feel absolutely horrible and guilty for even asking but do know many here totally understand.

Mum has been bed ridden for the last 4 months, previously was propped up in a chair. I live in the States and call very frequently to see how she's doing.
Mum was eating soft foods when I visited last October but is now on pureed food as she was keeping the food in her mouth and not swallowing.

She can't speak except for maybe a NO!! every now and then, is incontinent, doesn't understand anything and has no idea who anyone is.

She just lies in bed hugging her stuffed toy Eyeore.

The other day the nurse sounded happy and told me mum is doing well and was laughing, she sometimes just bursts out laughing. I actually thought oh God no!! This is my mum who was so active her whole life and is now a shell and I'm so sad when I hear these things.

I cannot bear for her to be in this state and feel so guilty even thinking I hope this hell ends for her very soon.

When I saw mum in October she was skeleton thin and I can't believe she is doing "well" .....is this something the staff just say over the phone??

How long does someone stay at this stage? Bedridden, pureed food, incontinent? I am sure everyone is different but how long can someone stay this way?

The staff are so wonderful so I know mum is in the best place possible but oh boy does it hurt to see your mum this way

 

[lemonjuice]

Yes certainly understand.
In my other's case, she was at 'end-stage' for over 3 years. Pureed food, mute and rarely responded facially, though the NH did occasionally get a response, doubly incontinent, unable to shift position let alone walk .. . . basically as she would have (and in her sister's case did refer to I tas ) 'Existing but not actually living' for those last 3+ years.
it is why it is sometimes referred to as a 'living death'. Her sister, my aunt was at that very last 'end-stage' for 6 years.

However others succumb much earlier before they reach that 'end stage'.

Yes, I always found over the phone the staff would always be really upbeat and even when I visited I had to choose who to ask. Sometimes I looked who was on duty and didn't bother to ask.

 

[Dino]

Hi lemonjuice and thank you.

Your aunt was at end stage for 6 years?!! Oh wow, just awful for her and for you to see her that way and your mum also suffered from this terrible disease....so very sorry.

Mum was a nurse all her life and was very active, I'll never forget her saying "Don't ever put me in a home" but of course she has no idea now.

When she was hallucinating years ago she told me her mummy and daddy were coming to get her, so difficult.

Thank you for your reply and really hope you're doing okay.

 

[malengwa]

Mum was at this stage just a few weeks, in fact she still knew who we were until 3 days before she died. I miss her terribly but am glad she did not go on and on for years. It' hard when you are so far away but at least you saw your mum in October. Do you have any family here to tell you how it is?