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 😭).

It’s awful, OP. I’m sorry that I don’t have any words of wisdom to offer but I just wanted to offer empathy and solidarity.

Thank you PenGold

I am so sorry… it truly is an awful disease. I am wondering, kindly, if there is any way your family could discuss not treating mum for reversible conditions? Obviously she would always be treated for pain and comfort but in terms of antibiotics for chest infections or perhaps even her cancer treatment… could she be allowed to decline naturally and die sooner rather than prolonging her health medically? I would also urge you to check she has a DNACPR in place (I would assume she does as she has a pacemaker, but you’d be surprised).
You could also get some grief counselling arranged, or just counselling to support you through the many challenges you face.

I hear you. My lovely mum had dementia and I can’t describe how traumatic it was for us as a family.
Im so grateful that she was in a lovely small care home that looked after the whole family. They just ‘got it’.

Anticipatory grief is horrendous. It clouds the rest of your life with you wondering if I have done more but I know deep down, I did all I could and always put Mum first.
Sending you love and strength x

I’m in the same boat with my DM, OP. It’s heart breaking. I feel like I’m the parent and I hate every minute of it.

Your words are bringing tears to my eyes. It’s just so so hard. My mum is going through the same, but she lives alone in a different country, I’m an only child and I’m doing what I can which is affecting my life (family, work, social life, finances) so much. I swing from the guilt of never feeling like I’m doing enough, to the resentment for how hard it is. Like yours, she was a good mum, always thinking of me first, she did all the right things to stay healthy for as long as possible, invested time and energy in cultivating friendships… but now the chips are down and it’s just me, and some days I feel like I’m crumbling under the pressure of it all.
I hope you can find some comfort knowing that you’re lucky in a lot of ways: you have a good relationship, you can be there for her at the time when she needs you, you have a sibling to share the load, and hopefully there are still glimpses of her that allow you to enjoys some light moments together. But it is very hard and it’s normal to feel overwhelmed sometimes. Be extra nice to yourself. Big hugs x

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!

This. We saw with the scramble for the Covid vaccines how quickly medicine can move with enough money and global co-operation, well, that needs to happen with dementia. I am really worried for the future with people routinely living into their eighties and nineties and beyond. As each generation ages home ownership becomes less common, so how the f* will govts fund people's care? It's a health emergency.

Tbh, when mum was first diagnosed with the bc and we didn't yet know the extent of the disease there was a fleeting moment when I thought 'Thank God, she won't get to the awful end stage of dementia'. I absolutely hate myself for even thinking that, however fleeting it was.

We (dad, my sister and I) have spoken about a DNACPR but dad doesn't want to talk about it. It is something we seriously need to discuss.

Thank you. I am so sorry you went on this journey too, it is truly awful x

I am hoping to find a lovely small care home where mum will be comfortable in her final days, weeks, months?

I really feel for you, so sorry you are here too.

We do end up in reversed roles don't we? Mum very much reminds me of when my dc were toddlers, it's truly heartbreaking and should not be how life ends.

Sending you strength x

I am truly sorry you are going through this, it must be so tough as an only child and in a different county. You are doing everything you possibly can, you are doing a great job. It is just awful though isn't it? Dementia is horrible.
Sending love and light your way x

I have the exact same worry.

Tbh, before mum's diagnosis, like many people, I hadn't given dementia much thought. I was unaware of it's true horrors. It is like a ripple effect, it takes the sufferer and all those close to them.

I am now terrified of dementia and, as you say, with such an ageing population and with 1 in 2 over 90 succumbing to the disease how on earth will the nation cope in the future? Less and less people are going into caring professions because it is such poorly paid (that is one thing I would change as a good carer is worth their weight in gold and society needs to re-evaulate how they view care work).

It is a mess and family are often left to cope in their own.

And don't even get me going on the pittance which is Carer's Allowance.

Don't hate yourself for thinking that - it's a completely normal response to not want your mum to go through the end stages of dementia.

When my dad was diagnosed with stage 4 bowel cancer, when it was 3 years into him having Alzheimer's, my first thought was also "thank God we don't have to watch him decline anymore with dementia". I really gave myself such a hard time for feeling relieved that my beautiful wonderful amazing dad had stage 4 cancer. But now, 2 years after his death, I can recognise that I'm only human and that anticipatory grief from the Alzheimer's had been destroying me. Thankfully his death was extremely quick and peaceful.

When he was diagnosed with cancer, his oncologist said it wouldn't be in his best interests to give cancer treatment, because his performance status was poor anyway due to the dementia, so the decision to treat or not was taken out of our hands really. Which I'm grateful for, because it was kindest all round - not just for my dad, but for my mum and me and my sister - to let him go before the end stages of dementia took hold.

Sorry for the big ramble. I'm just trying to say you shouldn't give yourself a hard time for thinking this and feeling this relief. I'm my opinion, it's love for that person that makes you think this. Be kind to yourself, and I'm sorry you're going through this.

you mention carers- are you also claiming attendance allowance
discount on council tax etc

Tbh, when mum was first diagnosed with the bc and we didn't yet know the extent of the disease there was a fleeting moment when I thought 'Thank God, she won't get to the awful end stage of dementia'. I absolutely hate myself for even thinking that, however fleeting it was.

On the contrary I think your reaction is completely rational. Why would you want to extend her suffering? Don't beat yourself up about wanting suffering to end, if anything it's the more compassionate response and one that puts her wellbeing and quality of life first. Be kind to yourself.

Hand hold @Holeinmywellies - writing this from beside my dad’s care home bed, 9 years into the dementia journey. He can’t walk, sit, speak properly, now doubly incontinent and doesn’t recognise me 95% of the time. The constant feeling of an axe about to fall is nigh on unbearable.

It is simply awful. I have just lost my mum last week. We have spent the last 6 years (more really, but it became clear about then) watching her slowly but surely lose herself and all her faculties to the point where she knew no one and nothing, could do literally nothing for herself. Dementia robbed her completely of all of herself and her dignity, and all we could do was watch it happen. I am at once sad and yet just so fuckin’ relieved that it is over (and feeling guilty for that). And angry if I am honest - really angry - at dementia. So sorry op, there is little comfort on this journey, I know. We found a specialist (private, expensive) Home for her and she was cared for well there, but it’s taken every penny she had to do it (whole separate issue). I also feel incredibly guilty there was nothing we could do to hasten her journey - she would have hated what she became and always said if she lost her faculties we were to put a pillow over her face, lol - she was a very pragmatic, active, no-nonsense person. I can be kinder to my pets than my relatives, and that’s a source of huge pain and regret.

@Purplecatshopaholic I’m so sorry for your loss and the trauma you and your mum had to endure

Sending sympathy and hugs, OP. My DM died slowly over 7 years and it was excruciating for everyone. I know see Dad losing his faculties and it's awful.
I've been a member of Dignity in Dying for several years now..

My granny used to say 'just pop a pill in my tea Ricky, and I'll sleep away'. Unfortunately she died scared and lost in dementia, in a care home, with no understanding of who or where she was. And no one was able to pop a pill in her tea to make it end any quicker.

It's horrendous OP. I consider myself fortunate that my mother died of heart failure fairly quickly after her dementia got to the stage where she was doubly incontinent and crying for her parents. My best friend's mum died of dementia over about eight years. It's impossible to understand how hellish it is if you haven't lived it

I get you but am further down the line. I just wish my mum would die. We have always been close and my parents have been married over 50 years. He is physically poor but mentally fit, mum is bonkers. Sad to see him tortured watching her. I’ve grieved for years and will b relieved when they go, hopefully not long apart. Then I know I’ll feel tremendous guilt for feeling relief but I am on my knees with care issues. Dementia is more devastating than cancer- and yes I have experience of both.

Dementia is more devastating than cancer- and yes I have experience of both.

100% this. I think so many people have experience of someone they know who's had cancer, and of course cancer is bloody awful .. but dementia is another level, I can't even put it into words - to watch someone disappear but their body is still breathing is the single most devastating and appalling thing I've ever witnessed.

I don't keep any photos of my dad from the years he had dementia. Even the early years, on the photos you can see it in his eyes, in his stature - he's diminished and confused and I can't stand to see it. I only keep photos from before dementia, and that's the dad I choose to remember. I keep the door in my mind firmly shut on his dementia years.

Thank you so much, it's very hard to not beat yourself up over the ramblings in your head over all of this sometimes.

i am sorry for your loss, I totally understand.

Thanks WhitbyBee, yes, m&d claim all of those.

Rickyrickygrimes Thank you.