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Elderly parents
Original poster

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

65 replies

Holeinmywellies · 17/11/2024 09:15

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 😭).

OP posts:
rickyrickygrimes · 17/11/2024 10:37

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.

WhitbyBee · 17/11/2024 10:37

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

WhenILookDeepInYourEyesISwearICanSeeYourSoul · 17/11/2024 10:34

Holeinmywellies · 17/11/2024 10:13

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.

Show quote history

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.

Original poster
Holeinmywellies · 17/11/2024 10:27

AInightingale · 17/11/2024 09:43

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.

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.

OP posts:
Original poster
Holeinmywellies · 17/11/2024 10:20

YourKindPeachMaker · 17/11/2024 09:36

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 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

OP posts:
Original poster
Holeinmywellies · 17/11/2024 10:17

BestIsWest · 17/11/2024 09:23

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.

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

OP posts:
Original poster
Holeinmywellies · 17/11/2024 10:15

Borntobeamum · 17/11/2024 09:22

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

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?

OP posts:
Original poster
Holeinmywellies · 17/11/2024 10:13

fourelementary · 17/11/2024 09:20

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.

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.

OP posts:
AInightingale · 17/11/2024 09:43

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.

YourKindPeachMaker · 17/11/2024 09:36

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

BestIsWest · 17/11/2024 09:23

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.

Borntobeamum · 17/11/2024 09:22

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

fourelementary · 17/11/2024 09:20

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.

Original poster
Holeinmywellies · 17/11/2024 09:19

Thank you PenGold

OP posts:
PenGold · 17/11/2024 09:17

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.