So bloody exhausted waiting for someone to die 4

[StiffyByngsDogBartholomew]

continuing from our last thread

www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3?page=40&reply=140073671

@Guineapiggiesmalls I cared for mum nearly 3 years in our home until it got too hard. She was falling, there were bathroom accidents at night which I was worried my son would see/step in, he was starting to show signs of resentment towards her as was my partner. So we started looking elsewhere and she accepted this and actually loved where she ended up, with people her own age etc. I'm glad we did this because although hard, I cared for her whilst I could, but I also prioritised my son when the time came. Sadly, I lost mum months ago, and barely recovering and now we seem to have the spectre of the exact same situation now with MIL who's on her own and likely has Alzheimer's. She's been incredibly unkind and lacking in empathy towards my own mum, even denying that Alzheimer's is a real disease, yet now needs a great deal of help. So my mental health is on the brink. This carer journey is exhausting and please please take care of yourself and your family.

I'm reminiscing about my wonderful and awesome mum. Dementia has taken nearly everything now. She has had such strength in adversity throughout her life, and sadly it's keeping her alive now when she has no understanding of anything, and such little quality of life that I'm crying half the time and willing her body to follow her mind and let her go. I feel like my heart's breaking with it all. She's such an amazing person. She deserves peace from this awful disease.

Doesn't sound like you owe your partner's mother anything @nodramamama .She sounds bloody horrible and it's up to her son and any other children she has to organise her care from now on.

@nodramamama i’m sorry I missed your response earlier. This sounds incredibly tough, especially when you’re still grieving your own lovely mum. If I were you, having been through this already, I would insist your husband and any siblings arrange her care now, before it gets too tough. I wish we’d spoken about hospice/care homes when my mum had the capacity to understand that it was in her interests, rather than us just blindly fumbling through end of life care at home.

Hello all, I’m new to the thread but have gained so much reading about all your experiences. I’m so sorry for everyone who is suffering through this.

After a brain haemorrhage, a series of strokes and a lifetime blighted by chronic epilepsy my 81yo DF is currently back at home with an end of life care plan. Mum is his primary career, but is too frail to do much. Luckily they have excellent visiting care. My primary concern is that DM is desperate to keep dad alive (possibly to his detriment). Honestly, I think he keeps asking for syringes of tea just to keep her happy. He’s a sweetheart. I know he’s ready to go, but he’s hanging on for her.

Mum is furious that the NHS have refused intravenous hydration and a feeding tube (he has almost lost the ability to swallow and has aspirated food and liquid in to his lungs). They are also now refusing to give him further antibiotics. I initially agreed with her, but having done some research now believe this is the right and kindest thing to do.

Writing this is very difficult. I think we’re keeping DF alive to please DM.

I have been grieving my DF since I was a child, so I’m sort of numb to these things, but the horror of watching him having to repeatedly recover from the latest medical disaster has been excruciating. I’ve been called to the hospital 3-4 times during the last two years to say goodbye to him. Because he’s rallied each time and beat the odds, we feel reluctant to give up on him. It’s a bit like being gaslit…both by him for defying the odds, and the NHS who have repeatedly told us he’s about to die (for 2 years).

The horrifically black humoured part of my brain is appalled that even though the prognosis is death, he’s been repeatedly refused CHC. “You’re ill enough to die, but not ill enough for health care funding”. The system is truly fucked!

My father, a true gentleman to the last, has been nothing but sweetness and light these past few weeks. He takes every opportunity to tell people how special they are, and how much they mean to him. This is clearly why my DM can’t let go. He’s pure gold all the way through. Reading some of your posts, I see that dementia has robbed you of your beloved parents. My heart goes out to you. I feel truly blessed that I have my dear, sweet father intact mentally. Tbh he was always quite cognitively impaired (from the epilepsy), but I really do understand how lucky we are. We have had precious time to have emotional, loving conversations.

I guess my heart is breaking that I’m going to lose the best man I ever knew. I’m also worried that looking after mum is going to prevent me grieving properly. It sounds so selfish, but I guess it’s good to write these things down.

My dad has taught me about humility. He needed help and care his whole adult life, and accepted it with good grace and humour. My DM is a legend for stepping up and looking after all of us. I have been truly blessed.

Sending love to anyone who is going through this devastating process. There is no good way to lose a loved one, be it quickly (so you can’t say goodbye) or slowly.

If you read all this waffle then thank you - I appreciate it xxx

@SlimeSuspect Your Dad sounds a gem and I wish him peace x

That's a very touching and devoted acknowledgement of your father SlimeSuspect. I wish him and you peace.

I had a very tough visit to my DF yesterday in the care home. He was in bed having refused the offer of being taken into the lounge. A scrawny tangle of limbs in bed intermittently moaning and crying and repeating he wants to die. All I could do was stroke his hand or his face. Dreadful. I wish his body would give in.

Just joining.
My own dmum has had a steady decline for years. Refused any GP visits for the last 4 years. I know she has dementia because she ended up in hospital after falling. The brain scan showed severe loss of matter in her brain. The last few months have brought about her seemingly not being able to tell her limbs where to go reliably, her ability to hold a conversation has got to worse. I practically end up holding both sides of it.
She has accepted carers twice a week now but it doesn't really touch the sides.
Why can't we just hit a button and wave goodbye when we choose?

Mums funeral coming up shortly. I just can't wait to get past it. It's been a tricky few weeks to navigate as I've felt fine but repeatedly having conversations where people are "so sorry for my loss" and it "must be so hard". I know they mean well and it's what you say, but I am not sorry and it's not hard, it's relief. I'm fine, I'm so relieved it's over.

@CornishGem1975 brilliant post I couldn’t agree more. It will be an utter relief when both of my parents die. They have made life so complicated for everyone just so they can have things their own way. No regard for the impact of their behaviour or actions and expectations for us to do everything for them. Hope the day goes well and you do indeed get the relief you need and deserve.

Adult social care have finally been to assess MIL - in hospital since New Year's eve with "nothing wrong" - she fell, couldnt get up, was taken in suffering dehydration because the ambulance wasnt available for 17 hours, and she couldn't/wouldn’t drink,
... and have finally concluded a discharge to home would be unsafe no matter how much care was in place. She thought the ASC lady had come in to take her to her childhood home (400 miles, and 60 years ago) and teach her how to ride her bicycle.
Now comes 8 weeks of respite in a care home ... we will see how it goes.

CornishGem I totally get it. I’m worried that when my parents eventually die (dad 20 years and still going with HD and my mum 6 years and still going with early onset Alzheimer’s) I won’t cry or be anywhere near as sad as other friends and relatives. The truth is I grieved them both in plain sight with no sympathy years ago.

Love @Guineapiggiesmalls quote:

“Sometimes it is just about choosing which turd to step in.”

Just brilliant! 😂

@TomatoPotato Reading the posts here I realise I’m one of the lucky ones.

Absolutely @CornishGem1975. 'm reaching the point where I not only won't be sad when DM dies, I'll be delighted, and inappropriately cheerful at the funeral. There's a picture of us all grinning like loons at Dad's funeral which with hindsight is a bit odd (a cousin asked if she could take a snap at the end) but we were so relieved that the wake had gone smoothly and he'd safely died with very limited time in hospital. Visit with DM this morning, she wasn't distressed as such but at first was asleep then looked pretty pissed off to have woken up. I looked at some pictures of her great trip to Australia with her and left them with her. Who knows if it's miserable to look at them or enjoyable. For me it's not great looking at her in her 70s white water rafting and sailing and trotting the globe, to now in her 90s just waiting in greyness for the end.

For me it's not great looking at her in her 70s white water rafting and sailing and trotting the globe, to now in her 90s just waiting in greyness for the end.

Same here! My mum was hot air ballooning in her late seventies. Now she's just a pale shell lying in bed waiting for the end to come.

Like others I'll be rejoicing when it does happen, and it can't come soon enough. Seeing her in this pitiful state is so utterly crushing.

I hear you. I'm doing all my grieving now I think, barely a day goes by when I'm not in tears grieving the loss of my lovely mum.

When she dies it will be a day of relief, even celebration, that she's no longer trapped in a zero quality life. I'll be happy for her.

I feel like that too sometimes, but then remember that we all have different lives, other burdens too and varying skills and abilities to cope. One day you could be Superwoman dealing with anything life throws at you, the next the tiniest thing could have you in bits.

The support on this board is fantastic and I don’t think I’ve ever seen anyone ever attempt a Top Trumps “well at least your elderly doesn’t…”. To continue the brilliant analogy from @Paperbagsaremine , a turd is a turd no matter the size or source.

I may be more active in this thread this year - I tend to lurk more in the cockroach cafe. Mum is now in a lovely care home, and the manager told me how shocked they were at how frail and vulnerable she is (local authority wanted to send her home from hospital with a carer package again, which is what she had before hospital). The care home reckon mum won’t see out the year, they’ll work with me to try and give her the best quality of life they can. They want an advanced care plan set up as a priority, and I’m reassured that they are aligned on “comfort and dignity” as a priority and not medicalisation of any and every step of the way.

Not that mum wants to be there and am sure is plotting her escape in any lucid moments.

I feel like I grieve every time I see DM. It's an ongoing, endless grief, the grief of a thousand tears shed individually.
when she finally does die my long journey of grief will be over.

Thank you, he's only child so very difficult and she's unwilling to accept she is getting older, we were told fairly recently the reason she had never saved a penny towards retirement is because 'it would sort itself out'. We were spitting feathers. And now things are getting harder, thousands in magistrate court fines re bad driving for example, which he's expected to time off to help sort last week, so we are now actually losing money. Thankfully, car keys are with us now.

Thank you, he is an only child and witnessed everything I have been through as he was supporting me in it, which is why he's desperately trying to make his mum understand how bad this is now. But she will not hear of it, will not move and refuses old age point blank. Had also been banned from driving and thousands owed to magistrates court we have found out from driving offences whilst banned. I am so so angry as is he, we are expected to jump through hoops now there is an emergency and in fact losing earnings now as he had to take a day off last week to help. As of yesterday she has been told she will need to make necessary calls to pay the accrued fines, perhaps it will help her see this is serious now having to lose the last money she has.

@SlimeSuspect I am so very sorry to hear this, your dad sounds so lovely and I am not surprised your mum isn't ready, it's heart wrenching to lose him and he is all she and you have ever known. Please do get videos, any memories he has on film and audio, these will be very special, I only have a couple of Whatsapp videos sadly and they were recorded as general update video messages for relatives in other countries, but bring me comfort. I do however have hundreds of photos at least. All the best wishes for your lovely dad and your mum and you.

@nodramamama that’s really great advice thank you. I visit as often as possible and make sure to sing his favourite songs to him, which he adores. I think I’m more worried about how to cope with my mum when he’s gone. She will probably need more support and time than I can give. I’m already at the point of burnout (trying to run a small self employed business on my own). At the same time, I really hope dad doesn’t have to hang on too long in this state. Such grim things to weigh up!