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What do I tell them?

(12 Posts)
Foxglove77 Fri 13-Feb-26 18:33:28

My lovely Mum has end stage dementia. Over the last 2 years she has gone from living independently to living in a care home for patients with dementia and complex needs.

It has been a horrendous journey for Mum and us as her family. Mum went from hospital with delirium to a totally unsuitable care home where they said she was disruptive and difficult. They locked her in a room in the dark at night and were then surprised when she tore the curtains down and wrecked the toilet in fear.

Mum was then transferred to the specialist unit she's still in now. Mum was attacked the first night she was there by another patient who we discovered had been sectioned. Mum has since suffered endless injuries and bruises. I can hardly bear to look at the photos.
Complaints have come to nothing. We had no say where Mum went from hospital. ICB dealt with it all.

My question is how do I answer the question of "how is your Mum doing?".
I know it's kindly meant, but since a fall out of bed, Mum cannot stand or walk and is non verbal. She doesn’t recognise us now and barely eats. I know it's progressive so there is no happy ending but I don't know how to answer the question. She's still breathing? She's still existing?

Grandmabatty Fri 13-Feb-26 18:38:43

"Thanks for asking. Mum isn't doing well but I find it upsetting so won't go into details."
" she's no better, but I appreciate you asking "

fancythat Fri 13-Feb-26 20:34:37

I am so sorry for what you have all gone through.

^Grandmabatty's suggestions are good.

I might shake my head a bit and just say "not good".

sixandahalf Fri 13-Feb-26 21:05:36

What an awful time for you. I suppose a simple " Thanks for asking". Anybody with any sensitivity would be able to read between the lines.

Erica23 Fri 13-Feb-26 21:46:02

I’m so sorry foxglove. My mum went through similar, it is absolutely horrendous for everyone.
People like to ask, and of course it’s only being kind after all, but I understand where your coming from it can be difficult, sometimes, I used to feel flummoxed because I didn’t know where to start or indeed if I even should, so I just used to say there’s no change unfortunately she’s still in the care home.
Usually that was enough. I think my face often gave the game away, I always looked tired and stressed so they changed the subject.
Please look after yourselves too. You have my sympathy.

Foxglove77 Sat 14-Feb-26 07:17:04

Thank you Grandmabatty, I think that's a good response. Thanks also for the other kind comments, it is a difficult time, so they are appreciated.

BlueBelle Sat 14-Feb-26 07:35:32

Foxglove I went through a similar time with my mum over seven years in fact, I moved her from one care home where I thought she was being hurt to another it was only marginally better I visited every day after work and often saw things I didn’t like, no more getting attacked, but not changed enough when wet, left to sit in the same position for long periods, stuck in front of the tv with any old thing on told she was ‘naughty’ etc etc I could go on she died twelve years ago and I still beat myself up that I should have done more I couldn’t change care homes she was not self funded and we had little choice in my area.
I agree with Grandmabatty I think her answer is perfect
A hug from me 🤗

Grandmabatty Sat 14-Feb-26 08:21:39

Foxglove you have my sympathy. Mum had dementia and others problems and I often had well meaning people asking after her. Her reality would have shocked some of them, I'm sure, and I couldn't face the relentless questioning from others. I wish your mum a peaceful passing

Astitchintime Sat 14-Feb-26 08:33:57

PM’d you Foxglove

Flippinheck Sat 14-Feb-26 08:58:03

I feel for you Foxglove. We went through something similar with my mum, though not quite so extreme as your situation. Dementia is such a destructive, heart breaking disease for everyone involved. Grandmabatty has offered good advice. I hope you and your mum find some peace very soon.

Shelflife Sat 14-Feb-26 11:36:58

My heart goes out to you Foxglove. Dementia is a cruel Disease. My DH was diagnosed 2 years ago but already our lives have changed. My man is changing in so many ways. Memory loss and losing things are minor symptoms and relatively easy to manage. Changes in personality are a very different matter. I fear for the future. I send you strength and a big hug and can only imagine the pain you are in . 💐🌸🌼

Foxglove77 Sat 14-Feb-26 12:36:42

Thank you for your kind comments.

BlueBelle it sounds like you did your absolute best to keep your lovely Mum safe. Hugs back to you.

We tried to move Mum to a lovely care home very near us, but the home she was in gave a negative review of her and they wouldn't take her.

I now understand what people mean when they say dementia means a long goodbye.

I miss how my lovely Mum was so much.