What to expect timescale - late stages

[rozzyraspberry]

Hi all.
DM was diagnosed early onset vascular dementia 11 years ago when 63.

It has been many years since she recognised loved ones or been able to communicate or care for herself although she has generally been of good physical health.
Over last 6 months we’ve seen a more rapid decline, with declining mobility and becoming more withdrawn. 2 weeks ago we saw a more stepped decline - mobility completely gone and she is sleeping most of the time.
Has anyone any experience of what we should expect in terms of timescales? I’m finding the uncertainty and not knowing what to expect really difficult - it’s been a brutal decline watching my once full of life DM completely disappear 😢

I’m really sorry you’re going through this. It’s my Mum’s funeral tomorrow. She lasted about 6 years from diagnosis and died at 73.
She “masked” a lot in the early stages but didn’t really recognise anyone for the past two years. She lost the ability to walk about 4 months ago and started sleeping more and more. Lost continence and the ability to speak apart from occasional words and weirdly, some song lyrics.
The last couple of weeks were horrible as she was struggling to eat, drink and even remember how to swallow. The carers and district nurses who came to the house were amazing.
But she could smile and squeeze our hand almost to the end. I think some part of her knew we were there and I’m glad I spent so much time with her, even though at times I could have screamed with frustration at the world.
You have a tough journey ahead and I hope you’ve managed can stay strong. Sending a hug across the internet

My mum was physically disabled and had been for many years before dementia became apparent. So it's hard to know what was dementia and what was arthritis but 10 months before she died we started buying different clothes so that she could be dressed without having to move her arms and legs too much. She was very sleepy although up and dressed every day but most of our visits she would be in blank and not responsive. Six months before she died, on her birthday, there a visit from a children's choir to sing carols. She had not responded to any of her presents, didn't make eye contact with us and seemed to be off the planet. The choir started to sing a particular carol and I bent down and said to her "This one's dad's favourite". The light came back into her eyes and she sang every word along with the children then the light went again.

There was very little response from her until the end - about 7 months later.

Hello there, my dad is the same right now. Suddenly declined on Wednesday after a bad fall. They suspected a small bleed on his brain and or early sepis. We took the difficult decision to try and keep him in his nursing home rather than have a hospital admission. He’s on antibiotics for a possible infection. He is now bed bound and too weak and unstable to walk. He is struggling to swallow food and liquid. He can smile and hold a hand but he looks ready to go. His hands are jerking and spasming. He can’t hold a cup or feed himself. He’s had enough having bravely battled for so many years.

I don’t know if this is the beginning of the end for him. I have work tomorrow but can’t face it. I don’t know what to do. He’s so helpless. I feel like I want to spend every minute with him but it’s a busy time at work and I feel id be letting everyone down. I also have no idea how long this stage could take. If it’s weeks I’d take the time off but what if it’s months. It’s just so hard. I have no advice but wanted to say you’re not alone and this illness is just vile and cruel. X