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

[Holeinmywellies]

My mum has been my best friend throughout my life, she always had my back, always been there for me. She has been a great mum to my sister and I.

Poor mum is bent over with osteoporosis and has a pacemaker due to a heart issue. She has been in pain for so long.

In 2018 she was diagnosed with Alzheimer's and as with this truly evil disease she is deteriorating month by month. Thankfully, atm, she still recognises us, can still feed herself and is just able to go to the toilet herself (with some assistance) but on the horizon it is not looking good, as to be expected with dementia, sadly. She lives with my dad and I see them 4-5 times a week. My dad, my sister and our lovely carer all try our best to keep mum and dad's world as good as it can be right now but it is far from easy.

And if the above health issues weren't enough to contend with, earlier this year mum was diagnosed with breast cancer. It's hormones sensitive and thankfully has not spread and is being controlled with medication but ffs!

The mental torture of watching my mum being slowly eaten away by dementia over a very long a drawn out timescale is destroying us all. I don't want to lose her but at the same time watching a lo change from a fully functional adult to someone with severe learning disabilities is crushing. It is so so draining, very emotional and fucking awful. And we have no idea how much longer it will continue for and what the end will look like, we live on constant edge.

I don't think people realise (unless you are unlucky to be touched by dementia), just how wicked a disease this is, it's often drawn out over many, many years and hard for all involved. The long anticipatory grief absolutely destroys you. I feel it's wrecking all our lives. I hate you dementia, truly despise you!

And to make matters worse, most sufferers will end up in care towards the end which will wipe out all of their life savings.

Sorry, it's a rant, I know but I just want to scream some days (most days 😭).

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.

@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

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.

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

@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

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

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

peace

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.

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.

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.

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.

It is simply heartbreaking there are so many of us witnessing our loved ones suffer for so long with this awful disease. I keep saying time and time again it's such a wicked disease and it is, there is no other way to describe it.

I will live on hope my poor mum won't suffer too much towards the end but I am so scared the trauma of watching someone I dearly love losing all her faculties will scar my mind forever, I suffer from anxiety and depression as it is. This disease is enough to test those with the healthiest of mental health.

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