So bloody exhausted waiting for someone to die 2

omg @moggerhanger the idea that my mother will live in that state for nine years - I'm sorry but that haunts me. If you don't mind me asking, what is the timeline of her Alzheimer's (diagnosis, progress etc)? I know everyone is different and I should stop googling stages of Alzheimer's as it gets me nowhere.

@PermanentTemporary and @SeriouslyAgain - am I right in thinking that your mothers have some sort of living will/advanced directive/ReSPECT form? Can I ask which one or template you used and if you have any advice as to what the most important questions are.

My mother's consultant suggested that she sort out her wishes for care now. I spoke to her about it a few weeks later. I couched it very much as, "I wish we'd done this earlier for Dad, so would you like to do this now that you're healthy and well". Which she very much agreed with, which was interesting that she sees herself in that way.

I said I'd come back to her with the right questions but I'm struggling to know what the best way of doing this. We ran into issues that my dad's ReSPECT form wasn't detailed enough and it was only with the help of a sensible GP that he avoided going into hospital the last time.

Gah, I find is so awkward, I really hate it. I wish it were more normalised.

Nine years! That’s what, over ten percent of her life? And a bigger proportion of yours.

DMs vital organs keep her going too, and while she isn’t as bad as your mum I just don’t see where the end is going to come. I dread the idea of her being less and less dignified due to her dementia.

@StiffyByngsDogBartholomew forgot to say - great news about the legacy! Though I can imagine it's a bit disappointing to not get any yourself (pay off the mortgage etc).

Sorry - I'm catching up gradually, hence the disjointed posts!

Looking back at FB memories, in 2015 I posted this: "Went to see my mum in the care home today. (For those who don't know, she has Alzheimer's.) Not doing great - she's beginning to forget that when eating, she needs to swallow. So she's aspirating food which is causing raging chest infections. She no longer recognises me, which is a change from when I saw her just before Xmas. She can't hold herself upright in her chair either. If I ever get that diagnosis, I'll throw a huge party for everyone I've ever met, and then I'll get on the plane to Switzerland."

I would not have expected that nine years on, she'd still be (barely) alive. A testament to wonderful care, of course, but at what cost?

Yes. The nurses' feelings got presented to us as a reason to feed Mum too. I don't doubt that it's a difficult situation to manage but the nurses' emotions shouldn't override DMs best interests. But I sometimes think they don't even see what they are doing to keep people alive because of course it is their job. It makes me wonder about their understanding of what they are doing sometimes.

I think sometimes the carers get very attached to the residents as they are and don’t see what we do, they don’t have the memories of how the person was before to reference, they’ve no idea that most of the personat laity that made them has long gone. I find myself getting attached to some of the other residents at Mums home, if they aren’t floating around the communal areas like normal I worry something has happened to them, I can imagine carers get really attached. I remember at my Dads home another resident who had expressed wishes not to be fed when they started choking, the family agreed but the care home overruled because “they couldn’t bare to see him starving to death”. If anyone prolongs my suffering like this they will get haunted!
I also think money plays a big factor. And fucking Shipman. That guy has caused immeasurable suffering.

This. And the drug companies too.

Sorry for what everyone's going through, and best wishes to you popularinthe80s - it must be such a strange and sad time.

My DM has gone very rapidly downhill over the last couple of weeks and is more often than not being fed. Today she was 'eyes open but no one home', just staring. Her mouth was hanging open anyway, then a bit of of food would be shoved in and then a repetition by the carer of 'chew, chew your food' until she started to.
She's doubly incontinent. If she ever talks, it's gibberish. It's grotesque. I don't know what the solution is because her letter of wishes does state that she wants feeding orally(not by tube thank God) so obviously it had to be done. But dignity and pride were so important to her when she was 'her' and it's just so undignified.
I wish it would end.

@moggerhanger , thank you, deeply.

@StiffyByngsDogBartholomew - 'maybe they are just so used to it they don't see it any more' - having worked alongside care home staff, I would absolutely agree. And the cynic in me would suggest that the 'thing' that keeps this racket going is a toxic mixture of the institutionalisation you refer to, medics and clinicians who are too scared to stop treatment post-Shipman, and, let's be frank, the amount of money that care homes rake in.

Oh goodness, this is exactly the same state my mum is in. It's beyond grim, isn't it.

Just catching up with the thread. @popularinthe80s I'm so sorry about your mum. I can imagine that feeling of disorientation. Much love to you.

Oh bless, thank you for asking. Mum has had a series of TIAs and is in the rehab unit of her local hospital. She is virtually bedridden although the physios are doing their best to keep her moving IYSWIM. We are waiting for her next assessment to see if she can go home and what sort of care she needs. I would say at this stage she needs 4 visits a day to wash/dress her, make her lunch, make her tea, undress her & put her to bed and then I think she would need someone staying over each night as well, plus someone to do her shopping/ leaning etc. Not good.

Sorry, pressed 'post' too soon. @StiffyByngsDogBartholomew yes the prolongation of life needs to be openly debated. I think someone upthread described this as abuse- it's an appropriate description. This thread and my own experiences have opened my eyes, and now I see it everywhere.
@Tara336 my father felt exactly the same way about his car. It must be such a painful reminder, just sitting there, unused.

@JellyWellyBoots your tidal wave imagery is spot on. You know the immense destruction is coming. But you can't avoid it.
@JaffaCake24 and @MereDintofPandiculation thank you warmly, and anyone else who has offered their condolences and I have missed them. I swear that bereavement has removed 20 of my already meagre IQ points.
@StiffyByngsDogBartholomew

@StiffyByngsDogBartholomew @Metoo15 @Valleyofthedollymix I think that car represents DF dementia to us. He saved up a long time to but it, polished it all the time (my car gets washed if DH takes it) maintained it beautifully he adored it and enjoyed driving.

I started refusing to go in a car with him as his driving was terrible. One by one family members began gently suggesting he give up and DM became a nervous wreck at the thought of getting in a car with him. He was still trying to drive a few months before he was sectioned and we did the keys in the end as the DVLA were unbelievably unhelpful when we tried to get his license revoked, they were writing to DF asking if he was fit to drive! He was of course writing back saying yes!

When I had DF sectioned we had 3 different professionals in the house and he was more with it that day. He spoke to the psychiatrist and said he would go with them if he would help get his licence back and the psychiatrists said he would. I dont think i will ever forget DF winking at me and saying "I think you found the right person to me".

When I looked at the car to take photos in the garage it was immaculate except for a dent in the wing and scuffed bumper which he had tried to repair himself, he would have never left his car like that before dementia it would have been straight to a body shop. DM said it was done when trying to get the car out if the garage as his spatial awareness had become appalling.

Even though its sensible to get rid of the car and DF will never set eyes on it again, it's a huge piece of him that's going and it's so sad.

@popularinthe80s im so sorry for the loss of your DM. It’s a profound relief but also such a sadness too. Such a finality to it all.

Its so odd to be on the other side.

You crave the release of the relentlessness but then when it comes something equally difficult mentally in some ways replaces it. An emptiness and a longing for a better time from the past when things were good.

im still processing it all and what it means. I miss her so much. I sometimes feel very alone.

Take care and wish you strength and fortitude for the next few weeks getting things sorted out.

Thank you all for sharing your experiences.

I agree. How can we lobby for this to stop?

So I wrote this analogy In my journal & I wanted to share it with you.

Waiting for someone to die is like waiting for a tidal wave to come & sweep your home and all your belongings in it away.

You can see the wave coming, but you aren't sure how close it is yet. You can feel the breeze & taste the salty air. It's not going to hit for a while so you can carry on doing your normal day to day things like cooking, or watching a movie with your loved ones.

It's inevitable, sooner or later it will hit.

One morning you look up & it's so much closer now and you swear you only looked away for a second. What do you do in those final few months, weeks, or even days? How do you stay strong?

Because soon it will hit and you aren't sure how bad the impact will be, but what you do know is that there will be a million pieces of your home and everything that belongs to you scattered over a calm sea.

@AgitatedGoose - they have done, eventually, but my God we have had to fight. Even in Mum's most recent infection, which I do think will eventually end her life, the GP prescribed antibiotics and thank goodness the nurses rang us. She has had antibiotics crossed off her chart for well over a year. We have been really nasty, the family you don't want to be, that we are too TIRED to be, but we don't have any choice if we want to try to prevent the continued abuse of my mother by keeping her alive.

The person you need to get on side is the GP - and unfortunately that means getting to every GP and getting flags on the record etc. Ask for a Best Interests meeting with the GP and the care home staff.

now I'm just worrying about what impact it will have on eligibility for any student loans etc in the future That would be annoying! At the moment it looks like just income that’s taken into account.

Yes very true , how does friend know how I’m feeling, I hadn’t told her and she didn’t ask, just said it was harder once they’d past away .
I’ve just had enough today. I’ve taken a kalm herbal tablet to try and relax 🙄