So bloody exhausted waiting for someone to die 3

[StiffyByngsDogBartholomew]

Carrying on from our first two threads..
https://www.mumsnet.com/talk/elderly_parents/4967638-so-bloody-exhausted-waiting-for-someone-to-die-2

Mum is having cardiology tests. Consultant said " we don't want you having a heart attack" and I couldn't help thinking that, for someone with Alzheimer's that would probably be a positive thing, better than the slow confused slide into oblivion. As it was she couldn't cope with the 7 day heart monitor and forgot she had been to hospital and I had to search the house to find it to return with her shouting and crying, calling me a liar and that she'd not been to hospital and had never had a heart monitor. My guess is it only had a few hours recorded.

@StiffyByngsDogBartholomew absolutely - when our Dad was in the reablement unit who let him stay way longer than was appropriate. There were reasons but I would definitely out myself if I shared why!

Mum sat in the multi disciplinary team meeting where we were told about the DoLs being invoked and the need for us to find a nursing facility- 8 months after we had already been told this and said that she ‘thought’ if he could have a hip replacement he would get better quicker.

@countrygirl99 think I have posted this before about our mother - she has spent her life telling me ‘you’ll give me a coronary’. She has zero issues with her heart or any other ailments. I do.

I truly think our elderly parents (often very elderly) completely overwhelm us with their needs. Its not always their fault of course but as much as you plan to get carers in, just hang around in the background it really really doesnt happen.

@Tracker1234 agree. It is overwhelming. My parents were child free by the age of late 40s early 50s. They didn’t have to support us through life as we now do, very willingly, our adult children. Mine were very clear they were not available for childcare, which suited me because I knew it would be loaded with lots of terms and conditions. They didn’t look after our brothers children but very begrudgingly. My sister and I had to field weekly calls about the state of his house, how lazy his kids were etc etc. So effectively our parents have had over 30 years on their own terms plenty of money but most of it was frittered on things to make them look good. No plans in place to pop in a downstairs bathroom for example.

DF is still slowly declining, DM seems to be determined to cause me as much stress as possible instead. I have sourced a reliable handyman who is currently doing work to put right years of neglect on DPs home, rather than be pleased there is someone to call on I'm being told everyday that the work is not satisfactory (he comes with glowing reviews) I know it is too much to expect to be thanked for arranging it all but I hoped I wouldn't receive complaints. The stress of dealing with ageing parents is real and I feel very alone with it as Dsibling is nowhere to be seen when it comes to assisting with it all

My dad always rolls his eyes if we go on holiday and mithers about never getting the chance to go away and "oh must be nice"
I point out that at my age they went on regular holidays when I was in my late teens as we went to the West Country at Easter and for October. Plus they had 25 years or retirement before mums stroke when they had plenty of money to go on holiday with but chose not to.

it really pisses me off

I remember doing a fairly local city break when DD was tiny and my mum whining that she'd "always wanted to stay in that hotel" (a Premier Inn so nice but not wildly exciting). I was so annoyed because by that point they'd had 20 years of an annual month long, long haul holiday and could easily have gone on a city break if they'd wanted!

Has another shit DF visit. He was comatose but, somewhat worryingly, appeared to have put on weight so lord knows how long this is going to go on for, it's been more than 2 years in the home (he can't move, speak, toilet himself, see and I'm not sure how much he can hear).

It's so hard to sit and talk to someone who is asleep for most of the time and doesn't respond even if his eyes do open briefly. At one point he went through a phase of being distressed if he heard some songs so I worry about putting on music.

That's horrific @HoraceGoesBonkers , how are they feeding him or getting nutrition into him?

He can only eat liquid food and the liquids he gets get thickener in them to make them easier to swallow. The last I heard (I stopped speaking to my mum for various reasons, including her determination to string out his life for as possible, so I'm not up to date ) - he gets woken up earlier than the other residents to get calories into him, so he eats more at lunchtime.

He told us repeatedly over many, many years that he didn't want to be kept alive in a home but I guess there's part of him that still wants fuel. Eventually he will die by choking. It's grim and I really don't think he'd want this, at all.

Oh, it's insanity. It annoys me when anti-euthanasia types use the phrase 'doctors playing God'; I think it is equally playing God to keep someone alive with nutrients and fluids when their body is quite clearly saying, 'I'm spent.'

Could you ask them to stop waking him? As long as they check regularly?

Indeed.
doctors play god from the moment they intervene in the slightest thing.
delivering baby with forceps - playing god
cancer treatment - playing god
pulling unconscious driver from burning car - playing god.

its a straw man argument.

This is what annoys me about the assisted dying stuff. It's a tiny part of the discussion but gets the most traction.
people being artificially kept alive for no reason at all when there is no hope of them ever getting better like @HoraceGoesBonkers Dad is the real issue.

I can't do anything cos my Mum is NOK and she picked and organises funding for the care home and she either gaslights me about whats happening or gets angry if I challenge her directly, or just goes ahead and asks them to do things. Like she will make a big deal about "consulting" on whether or not he has a covid vaccine but the feeding arrangements went ahead without discussion. She was obviously going to get the vaccinations done anyway.

The last time he nearly died she asked me to go into hospital in the middle of the night and the hospital were about to treat him with antibiotics, I said then that he had no quality of life to the consultant (this was before he was as bad as he is now and I was really hoping we could talk about the long term prospects as he's got a degenerative illness, although the hospital visit wasn't directly related). She got really offended and shouted over me that he had a great quality of life.

It sucks but there's nothing I can do to intervene at the moment.

And yup, agree with all the assisted dying arguments. The only people benefiting are the care home company and the pharmaceutical companies.

It can be very sad too. If the spouse really loves the person and cannot bear to lose them. My dad was literally on the end of life pathway after a brain bleed, had had all fluids/sustenance withdrawn, was heavily sedated, and my mother, who had mild dementia at that point, was asking if anything could be done, started talking about faith healers.

I think as our generation (gen x) deal more and more with these situations and form our own opinions on what we want for our own last years, coupled with the upcoming state pension funding crisis, I think there will be more of a shift to “quality of life” in thinking rather than “life at all cost”. I hope so anyway, should I live to the same age as DM. I will also be expressing written wishes about palliative care only in the event I lose mental capacity and cannot live independently.

My FIL has been admitted to hospital again, this is his 4th admission since August. He has COPD and a chronic non tubercular infection. It’s the same cycle every time. He gets admitted for iv antibiotics, steroids and oxygen for a week or two, he gets a bit better, they want to put him on different antibiotics on discharge but his liver isn’t up to it. They discharge him on oral antibiotics that are ok for his liver but not for the type of infection he has. He gets worse at home and ends up back in hospital a couple of weeks after discharge. If he’s not able to have the antibiotics he needs for this infection then where and when does it end? He’s so frail and has no quality of life because everything leaves him breathless. He couldn’t even sit up in bed let alone get to the toilet in the night when they called the ambulance. He refuses to consider a stairlift which makes more work for MIL but I wonder if we’re past the point of a stairlift now anyway. My DH is away with work and we haven’t told him his Dad’s been admitted again. He can’t do anything and he might as well have a few days break from the exhaustion of it all.

This is the thread no-one wants to be on isn't it!

Until recently I'd thought a lot of the issues we have with my father's longer term care were 'system' related. Since his latest hospital stay where I have spent a lot of time being present I've discovered for example when the social worker discharge person (I don't know what they are properly called!) is talking to my mother that actually mother is causing some of the issues in terms of what she is able to manage etc she tends to parrot what my father has said rather than voicing her own concerns/issues (her own limited mobility and mental health issues for example).

I also find her constant "they are't helping him" rants really hard to deal with when I know there is only so much they can help with....you can't do much to help alleviate parkinsons/dementia/prostate cancer really can you, you can't remove the elements of inevitability.

Frankly it all makes my head hurt...a lot...

Doctors play God the minute they write out a prescription for medication.

Everything they do is pretty much playing God.

@Kettricken It's really crap, isn't it? We had this with my Dad for a while. My parents were refusing to accept where they were and also doing anything to plan for the future.

It just meant they were struggling for ages, finally accepting they needed stuff which was getting installed at great hassle and expense, but not really getting used for long because circumstances would force them onto the next adaption.

If they'd got some of this stuff earlier their life would have been easier and it'd have avoided a bad fall.

@HoraceGoesBonkers I’d imagine your Mum has asked for your Dad to be woken up earlier than other residents so they have longer to feed him. I can’t imagine the care home having this utterly ridiculous idea. I really feel your pain and came very close to screaming at the car home staff when I witnessed them tapping the side of my Mum’s mouth with a spoon to produce an automatic reflex. My Mum was like a living corpse at the time!

@AgitatedGoose That sounds about right. I can mostly see the wood for the trees with the lies but not that one!

Weirdly when my mum moved him into the home (which I didn't want because it is in the middle of bloody nowhere) she boasted about what a good financial deal she got, then later on was offended because the home had apparently raised the fees and only told her 6 months later and she had to pay a big lump sum towards it. Sounds 100% believable.

Really needed to stumble across this thread today.
Going through this with MIL who has a heart condition that cannot be fixed as the surgery is too risky. She has 12-18 months, of next to no quality of life, that could still be 12-18 months this time next year. Her symptoms will continue to be treated as best they can until she no longer responds to medication and then at some point after that she will die.
So far so terrible. But, she is so difficult and demanding. Always has been. DH stressed out of his box running around after her. Doing what he always does when stressed, picking fights with me. I've spent the day "gray rocking" him. Seems to have worked. No shouting matches, although he seems confused. Wondering how my less than perfect marriage can possibly survive this process.
FIL dying nearly finished us, 5 months of him fussing around his mother to try and keep her happy, meanwhile being permanently angry with me because he was having to do that and not coping. And no I can't talk to him about it, because his mother is dying. So I'll continue to do what I can and not engage when he tries to bait me into an argument.
I know all will be fine once she's dead. Which is a shitty thing but there we have it.

Hello @Radionowhere welcome to the thread.

I'm sorry you're in this difficult position. Is your MIL at home? Has she got carers?

A lot of us on here have discovered that as women, we're expected to run around and do all the care work. Even for non-relatives.