So bloody exhausted waiting for someone to die 4

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

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

@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.

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.

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.

@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.

@Guineapiggiesmalls God.

If it helps with the guilt, your child will be affected for decades by whatever happens now. Your poor Mum won't, because she won't live anywhere near as long.

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

@TomatoPotato I've been careful to never criticise the carers as they are looking after someone that we just could not cope with. I think when you have a "difficult" (being polite) parent you do always wonder is it me? I always knew that things weren't right because I looked at my friends families and then at my own and thought why is my family so stressful to be around? It took sometime to realise it wasn't me that was the issue (despite DF telling me I was) so just that validation from a complete stranger was huge for me. I truly believe the reason I have a chronic illness is because of the permanent state of anxiety I lived in having to deal with DF.

@Tara336 that’s a very insightful post. My DM’s carehome manager also has the measure of my mum and her “enabling” relatives who swoop in, create mayhem with their unreasonable demands and criticism of my mum’s care (which is excellent) and then f o again for months at a time. But I’m the bad guy who was told for years that i was the difficult one. To finally be supported and validated by neutral non-family members is a relief and helps me get through this sack of shhhhh…

@AgitatedGoose when DF was sectioned he was in there quite a while we found a care home that would agree to take him as he was violent and uncooperative. I was in contact a lot with the manager of the unit where DF was and just having a complete stranger say to me they had noticed that DF was manipulative and controlling with newer less experienced staff members was a weight off my shoulders because although I always knew he way like it being told its been by someone "neutral" was a relief.

Thank you all. Last night was a complete disaster, my mum ended up bleeding from an injection site and it wouldn’t stop so called 999. She’s been taken away in an ambulance, which also feel v guilty about as she’s desperate not to be in hospital. Selfishly thinking that this could be helpful as she would be an unsafe discharge and may end up with more care/support.

@Tara336 The difficulty of caring for parents who didn’t care for you is rarely acknowledged. In my experience you get a pat on the head and told how strong you are for not being utterly ground down about your childhood trauma. This completely invalidates what happened to you and makes asking for help much more harder.

Oh @Guineapiggiesmalls you poor love. Looking back, you may feel more guilt about spending less time with your 6yr old during this time than with your mum. You are being pulled in so many different ways that you must look after yourself before you can look after anyone else. Please do look at getting extra help with your mum.

I don't think you'll regret being resentful @Guineapiggiesmalls but I do think you will be bruised and perhaps traumatised by this entire period. Please please do look at some alternatives. You shouldn't sacrifice your life to stop your mum making a face!

@Guineapiggiesmalls You shouldn’t feel guilty about not wanting to be a carer for your Mum and in view of the impact it’s having on you and your family the current situation isn’t sustainable. I can imagine no one had asked how you’re managing or even worse you’re told how resilient you are for coping. It sounds like your Mum needs 24/7 care and maybe you need to be firm with about what you can and cannot provide.

@Guineapiggiesmalls I totally understand where you're coming from. Your feelings are normal.
Regardless of the face she pulls, your family need you and a hospice sounds like a sensible option.
Can you make enquires and see if you can get her a place, then present it as a fait acompli?
In the meantime, can you cut down your visits? Tell her your DC is not coping well at the moment and you need to spend more time with then.
And remember, you're doing you're very best and have nothing to feel guilty about.

I feel guilty saying this, but I’m really hating having to be a carer for my lovely mum. It’s only been months, compared to some of your years, but already I’m utterly miserable. Her personality has changed because of the brain tumour, and it’s hard work. My kids are affected, with my six year old now wetting the bed, and I’ve not had a weekend in my home since October. I mentioned hospice again today and she made a horrified face. I know I’ll regret being so resentful once she’s gone, but today is just a really tough one.

Sitting with DF now in his care home as he lies incapacitated in bed. He didn't know who I was when I came - though seemed to after I explained. No coherence to his meanderings about having an Italian illness, an angry surgeon etc and finding out his mother died. Difficult to engage with him at all as it's quite incoherent babble. He's fallen asleep now....

@TomatoPotato my DF has never been a very nice man (understatement) a few months back on a good day I told him I don't forgive him for one of the particularly nasty things he did and as expected he denied it. But I felt better for having said it. Sometimes when he asks to come home I feel sorry for him but he made life hell for us before and after diagnosis. I became extremely depressed in my late teens early twenties because of him. I would be physically sick at the thought of walking into "home" because of the way I was treated. I always want to behave in a better way then him and be decent which is why I helped when he was diagnosed, he hates being in the care home and it must be awful but I'm ashamed to say sometimes I just don't care because of the way he treated me. If you can speak to your DM on a good day and you think it will help you going g forward I'd say do it.

Sorry to read this @Tara336 My mum did something shameful about 2 years ago when she had capacity but the chickens are coming home to roost now and I want to ask her why she did it. DH says no, don’t confront her but I want to know why she did what she did and ultimately we have to sell her house from under her as her actions have led to this consequence.

@TomatoPotato yes,.DF is id say 3 years into this journey with vascular dementia and some.days is very with it and you are able to have a conversation. Although those days are few and far between now, last week he told me the cut on his hand was from a shark hook when he went fishing! DF has never fished in my lifetime so no idea where that statement came from. Has also returned to asking to go home and I have to tell him he is "a ward of court" and I can't take him home that seems to work in calming him. I don't know how much longer this absolute misery will continue and I said to DH the other day that when DF was sectioned I thought he would recover and come home but I think that was just me not facing reality

My mum's had dementia at least ten sorry sad years, but was only finally diagnosed five years ago.

And some people like this moron think another five is to be celebrated.

FFS. How could anyone think this was good news!!!. I’d tear the journalist apart if I could get hold of them.

Beneath the bizarrely chirpy tone (happy to say the journalist has been trailed apart in the comments), it's probably fairly accurate, 9-10 years is the average female life expectancy with AD I think (other dementias are faster progressing). My mother was struggling seven years ago, I'd date the beginning of her condition from then. She's frail now, I wouldn't like to think she has more than a couple of years to go in this degrading state.