Finding this long anticipatory grief is getting too much for me to deal with.

yep when you have seen your mum at end stage dementia it can really mess with your head not sure I'm ever going to forget it ro be honest such a wicked disease

Thanks previous posters for the kind wishes.

If it’s any comfort to anyone, I feel less grief at the moment than I did before my mother died. Maybe I am yet to process it fully (she died less than a month ago and it’s been a busy time for other reasons too), but at the moment I think my main feeling is relief. I was expecting it to be more complex than this, but for now it isn’t. Though it’s odd getting on with life without this huge thing that has taken up SO MUCH TIME over the past few years. I’m a bit worried about the void it will have left. I’ve been too busy to notice it yet but I suspect after Xmas and new year it might hit me.

Yep our Lovely, kind, practical independent mum has gone too. Lost into the depths of dementia . She’s still alive and physically well , in a lovely small carehome that costs a fortune and we try to make sure her life is the best it can be.

It absolutely sucks and you do indeed have to have walked down this path to understand just how awful it is. Awful.

I would wholeheartedly recommend counselling OP. It made a huge difference to me (and I would never normally go anywhere near something like this) but I could say what was in my head without worrying anyone if that makes sense. She just understood - and helped me process my feelings. I saw her for about 6 weeks before Dad died and for about 12 weeks after. I was fortunate that this came through the hospice.

This thread is heartbreaking and my heart goes out to all of you. We're all in the club no one wants to join sadly.

I lost my lovely Dad to cancer and dementia. I take comfort that he didn't know he was terminally ill, no treatment was given to prolong his life, just palliative care managed by the angels on earth at the local Hospice.

I genuinely thank God that he went relatively quickly and did not suffer or deteriorate any further while he still knew who I was.

peace

my mum had a piece plan in place which meant she only then went to hospital if she broke something etc so she was just kept comfortable in her bed at her care home where they were so kind to her and looked after her and all her end of life care

Agree dementia is grim in my opinion worse than cancer and I have experienced both with my parents my poor mum within two years of being diagnosed with dementia she couldn't walk or talk forgot and also forgot how to swallow doubly incontinent and confined to bed when she passed away at the end of those two years I hate to say it but it was a blessing in disguise I miss my mum terribly but my mum before the dementia who knew me that poor old lady with dementia was scared and frightened and nothing like my mum

@Choux I found that mums GP was very happy for me to be very direct and say I only wanted her treated for things that would make her life better in a very immediate sense, no hospital admissions, DNR, comfort care only when it came to it. And the home let her slip away very gently with end of life drugs provided by the GP after 15 years of dying day by day in the most undignified way

I know it's too late for her . No way would an animal be put through this . It's such a cruel illness !

@Choux all of the female relatives above me have had or had it so it's not looking great for me . I plan to deal with it before I put my family through what my mum has put me through .. yes I know she can't help it but it's been the most horrendous few years with many more ahead of us !

I do sometimes wonder what a vet would say if my pet dog had the same symptoms my mum does.

Even if assisted dying is legalized soon it won't cover people with dementia as they don't have capacity to consent to it. As her next of kin and health and welfare POA holder I am the only person who can advocate for her. I feel quite fortunate that her care home understand when I say I want her to pass away there rather than in hospital and before she reaches end stage dementia but when we actually get to point where I am trying to refuse treatment for something will they understand then? I don't know.

@linelgreen I agree

We wouldn't put an animal through what we are all going through

I'm fully in favour of euthanasia and hope it's legalised soon if it happens to me

My mother developed dementia when I was in my late 20s early 30s. She could not really participate in my wedding planning. It was a lonely and awful experience and when my kids comes along it was heart wrenching. We had over a decade of it before she died. She was always so confused in the early stages and wanted to just give money to the grandchildren but was unable to buy them gifts. She just could not really be a nana to them. My kids were dragged to a care home when aged 4 etc. I once watched this mum in her early 30s having a go at her mother in Marks and Spencers for not getting her the right cake or something and I wanted to cry. My adult life was blighted by my parents illnesses and care needs. However I lost all parents/ parents in law by my mid 50s. Now I see everyone going through what I went through decades beforehand. Dementia is a long and painful illness for the sufferers and the families.

MIL exists now.
She has Alzheimers which is not too bad... memory based. She has frontal lobe shrinkage which is not too bad... emotion based. But worst of all for her, she has vascular. It is destroying her body slowly.
She was diagnosed 8 years ago and now exists in bed. She has a hospital bed at home and carers in all the time. She cannot use her legs now, her arms are going too... She does not leave the bed. Ever. Her hearing has gone. Her sight is minimal. She no longer really wants to talk.
She merely exists. It is soul destroying.
The doctor was brutal with my husband and his brother... he had to be as they thought "dementia" ... she'd meet her end as just a bit dotty... he said that she should not be given anything other than palliative care and this degeneration will go on until basically she inhales food, or catches a bug and goes with the "old-folks-friend" - pneumonia.

Start talking about DNR etc now, my dad put off POA etc for too long and mum was dying before we knew it
Thankfully the hospital were sensible when I said no treatment for the chest infection/sepsis and let her go

After that I've done my own living will which I would recommend to anyone
Mine is that if I am diagnosed with dementia, no life extending treatment from the day of diagnosis

I agree. The anxiety and stress is horrendous. Years of waiting for the phone to ring with another problem, a fall, being called to hospital etc.
And afterwards, it is hard to remember what your life was like before all this started... It changes you.

I'm sorry for your loss.

I know it's controversial but we really do treat our pets better at end of life they are not allowed to suffer when there is no hope.