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 😭).

I’m in the same position as you and I describe it as pergatory, it’s hell.
I’m looking forward to the days my mum doesn’t know what’s happening to her anymore, it can’t be as bad as this
sending hugs

Oh, I am so sorry. It is such a wicked disease. I am hoping one day I will be able to think of my mum and not recall these awful days so strongly.

I truly hope your dad's journey to the end is as peaceful as it can be.

I am so sorry for your loss, I truly am.

I totally understand your anger, I hate dementia, hate what it does, not only to the poor sufferer but all those around them. My poor dad says he may as well have dementia too as it's taken over his life. We all eat, breathe and live dementia atm.

And the whole extortionate care home fees are making him ill with worry. They have saved so hard over the years and of course people with money need to pay for their care but why does it need to be so so expensive? We have been quoted £100k per year from many care homes in our area.

I identify with so much of this. It’s SO awful. My mother died recently and I think I’d done a lot of the grieving already. But over the last few years it has turned me into an absolute anxious wreck. It’s such a massive and awful issue and not discussed anywhere near enough. Sympathies to all. One tiny positive point I will make is that a good care home is an absolute lifesaver for the family.

Dying with Dignity really does need to be addressed. My mum would absolutely hate to be living like.
Sorry for the loss of your dm.

I often regret the fact that my mum has a pacemaker. Her mum died of a heart attack and dad of heart failure, both their deaths were quick. We all wish that for our loved ones.

My Dad wasn't right OP for a good 4 months before he was eventually diagnosed with liver cancer. He had a condition called hepatic encephalopathy which the GP insisted was sudden onset dementia but the reality was that his brain was flooded with toxins that his liver wasn't getting rid of. Over a period of 9 months in total, Dad went from someone I'd adored my whole life to a complete stranger who was utterly terrified and needed round the clock supervision. When he went into a hospice because his symptoms were so unmanageable in the community, I started seeing a counsellor who talked about anticipatory grief and honestly, it was worse than the actual grief when Dad passed away. I was shredded mentally and physically by that stage.

I can't offer any answers because honestly there are none, but I completely understand this horrid situation you're in

@Holeinmywellies I'm in the same position but we have no Dad so mum is on her own . She has been verbally abusing me for 2 years but has now progressed onto the toddler like stage . It's absolutely hideous to watch isn't it . The toll on myself and my sister is utterly debilitating

How come her savings will go of the dad is around ?

We have spent £150k so far with no doubt plenty more to be spent !

So sorry to hear this. My Grandma had alzeimers. She moved into a home and I was devastated and again when she actually died. It was like she died twice.

I totally understand and so sorry you are going through this.

People do not understand this hell. My dh doesn't fully understand. We lost my poor MIL to cancer 4 years ago. She was ok for a few years and her death, although very painful and simply dreadful, was over very quickly. He doesn't quite get why I am so stressed and distressed all the time. It is simply because the pain of watching a loved one suffer from a disease was quick for him but is becoming so long and drawn out for us. My fil tells my dad that at least he still has his wife alive but he doesn't. The woman who sits beside him very evening watching tv is not the woman he married 52 years ago.

I don't even explain to friends anymore as I can not fully articulate this hell. They can't understand unless they have experienced it themselves which thankfully they haven't.

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.

I not only hope something else takes my mum before she gets to the end stage of dementia, I open tell the staff at her care home that I want that to happen. So far she still recognizes me about 50% of the time that I visit and can eat and just about toilet herself so she still gets vaccines and antibiotics (mainly for UTIs). But if she got pneumonia or something I would be questioning if it should actually be treated or if it was in her best interests. She has poor vision from AMD, poor hearing but can't wear hearing aids now, a variety of skin rashes (possibly reactions from medication), anxiety which seems to be worse when she has a UTI, arthritis.

The woman she was a few years ago would be horrified if she could see herself. I owe it to her to not let her be reduced to a mere existence in a clapped out body by asking for every medication that will prolong her life. Never feel guilty for wanting her to not suffer a wretched end for months and years.

The antibiotic thing confuses me; my mother has been on multiple courses for the last few months and another now for a chest infection. I thought that doctors were keen to minimise their use as bugs are becoming more resistant, but so many elderly people seem to be on frequent doses, when in a previous era they would have passed from things like pneumonia. I know that sounds ruthless, but prolonging the lives (and mental distress) of people who are mere slivers of their former selves serves no-one, and may even make matters worse for the rest of us.

I agree with you @AInightingale

Towards the very end of my mums life the care home asked if I wanted her to have her annual flu vaccine. Even they sounded as if they thought it was a terrible idea.

I'm another one sending you sympathy and empathy.

I lost my mum a month ago, following a stroke. She had been struggling for years with vascular dementia and a heart condition and had spent the last 8 years in a residential home.
My Dad died 4 years ago after a fall at his care home. He had Alzheimers and had also been treated for lymphoma.
These were educated, intelligent people who would discuss politics and religion into the wee small hours, they had a house full of books and a passion for hill walking and photography. Watching their decline was horrendous.

It is indescribably hard seeing your parents deteriorate mentally, to the point where they don't even know who you are. When they die it is like a double loss, because you feel that you lost them years before, after the dementia took hold and slowly robbed them of their vibrancy and character. They become a mental shell first then a physical shell. Dementia is a cruel condition.

As an only child, I've had to deal with it all alone. I'm disabled, no family or friends. I knew I would never have an inheritance; their home was rented and their savings dwindled to almost nothing, due to initially needing care at home and then residential care. I started to worry that there wouldn't even be enough left to pay for my mum's burial...she had wanted a woodland burial with no service so that's what she got. I'm left with a few hundred pounds and I'm going to plant a couple of trees in their memory.

I'm so sorry that you have similar to face. It isn't easy, and always, at the back of your mind, you consider the likelihood of it happening to you... It is a ticking time bomb for many of us.

It is pure hell. So sorry you are also on this journey.

I'm sorry for your loss.
I'm a wreck too, this disease really takes everything out of you.
There needs to be a greater awareness of dementia. The people I talk to still think it's a bit of memory loss.
If only!

I do wonder if counselling may help. Did you find it helped give you some closure and relief?

They say this on the Alzheimer's Society ad, they die again and again.

Mum would be too, she would (and does) hate living like this.

Sorry for your losses.

That must have been such a difficult time, especially going it alone, I really feel for you.

Trees in their memory sounds like an absolutely lovely idea.

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.

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.

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

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.