So bloody exhausted waiting for someone to die 2

Good post @BanterBaby

Just wondering how others cope with either caring or overseeing the care of elderly parents particularly when the past relationship was very difficult and you’re doing this single handedly?

@AgitatedGoose re your question, thanks for giving me an opportunity to answer.

My mother is 87 and still lives independently, though housebound now. She lives
a few hours away from me. She hasn’t been a good mother and there have been periods of NC because her behaviour has been so terrible.

How do I cope? We are currently in contact and because of her age now it hardly seems worth going NC now. However, over the last 2 months I’ve pulled back a lot, and “let the chips fall where they fall”.

It’s one phone call a week instead of 2 or 3. One visit every 6 weeks instead of monthly. I now refrain from telling her some things I’m doing eg holidays; only general chitchat.

What I’ve noticed this last couple of weeks is that she is being more pleasant and there are less flashpoints and criticisms coming from her (fingers crossed 🤞 this is the way of the future). It’s like when you install boundaries people respect you more and are nicer!

I’m also doing much less for her, have parred down my duties eg banking to a minimum. Mostly it’s just shopping online (she’s demanding there, but it’s also a pretty narrow job at the same time). If she couldn’t cope further I would hand her care over to social workers to organise (she is self funding and would pay extra for this service to be organised by them but that’s fine) or go into a home, again self financing. I see her getting more frail and tired which isn’t easy but mentally she is full tack and manages well. Most of her demands for socialising are met by neighbours, to whom of course she is very pleasant and solicitous in the main.

The other pay off is that I am starting to feel
so much better and have more time and energy for myself finally. Cutting back to calling her once a week has really made a difference. I think about her a lot less so there’s less negativity in my life. It’s not always easy though; I’ve had to be strict with myself at times. I suspect there’s some training to prove I’m a “good daughter” which I’ve had to consciously resist. But think this will get easier as my boundaries become clearer and more settled. So far, things are a lot calmer and I’m maintaining all my boundaries to try and maintain this new state of affairs.

I hope you have found ways to support yourself in your situation AgitatedGoose 🌺

I’m going through similar with my recently deceased FIL. I’ve watched him bully and coercively control his family (especially MIL) for years, but now he’s dead, the narrative has switched and MIL has made a shrine to him in the living room. I thought she’d be ready to enjoy the rest of her life free of him, but in reality I think he died too late and she’s too old to enjoy the freedom now.

It’s difficult for me to understand I guess, because I’m an outsider and, despite everything, he was their husband/father after all. But ultimately I’m angry that he was such a shit husband and father and death has absolved him of all of that.

Sorry. I hadn't remembered that you'd already posted about her. My apologies.
It sounds like a very difficult situation.

@AgitatedGoose I think I'm still working through so many emotions with my por relationship with my DF. Hes now in a care home and I won't bore you with all the details but as a father if I said he wasn't great it would be an understatement. I dont like to see him in the state he's in now, but I also struggle with how I actually feel as he is a very selfish, self cenetred man who bullied us all. He was never physically abusive but he was emotionally abusive and I find it hard when staff say "oh its the dementia" it's really not the dementia what they are witnessesing is who he really is only he doesn't have the skill to hide it from view now. I have tried reading some of the self help books recommended on here, but then I feel angry about the fact I'm having to read them because he caused this.

Slowly we are beginning to speak in my immediate family about what it has been like for us, I always knew how he treated us wasn't right and I learnt to hide it from anyone outside and to survive as best I could while living with it. I learnt from a young age DF didn't do anything for us unless there was something on it for him. Now he asks to see me and it is still the same I go in and he will demand I sort something (although he's losing speech now so just stands over me wagging his finger in my face). I have no intention of sorting anything unless he's in mortal danger and I will visit when I feel like it now rather then when he demands.

I wish I had answers how to manage, I think do what feels right at the time and try not to expect too much

My Mum is thankfully in a nursing home so I’m aware it’s much easier for me than many people on here. I find visiting my Mum very stressful and it’s a long journey. My step father has usually got into a muddle so there’s always something which needs sorting out. I think it’s the increased contact that’s hard as I was previously low contact.

@AgitatedGoose why are you caring for parents who did not care for you?

Can you arrange carers? There's no need for you to do this, surely?

Just wondering how others cope with either caring or overseeing the care of elderly parents particularly when the past relationship was very difficult and you’re doing this single handedly either as an only child or because other siblings won’t get involved. I fall into the former category and feel constantly stressed. Apart from this thread I feel there’s no support out there for people who had a dysfunctional family background and now have elderly parents who need help. I have extended family who live abroad and whilst they can’t do anything practically the odd phone call offering emotional support wouldn’t hurt. I’m on Facebook with these people and despite posting several times about how stressed I am they simply scroll on by. I’ve actually reached the point of considering ending all contact with them.

@Choux By the time you get to the “no hospital” decision I would imagine you are already looking at immobility, fighting daily to avoid bedsores, and who knows what other problems.

@PermanentTemporary’s posts shows that the decision may not be obvious, and hospital has its own dangers.

@choux I think in the circumstances at the time, it would have been the latter, givrn that my mum wa right in the middle of one of her many 'come at once, she's in her last hours' calls (16 months ago ) - though even though she did come vack from that, sges never stood up or even sat up very well again. But surgery is always a bit of a toss-up and it is possible to decide against and to just go for bed-bound living with the assumption that the person will only have a short time left. My aunt did eventually have surgery for a broken pelvis - I think because she'd been gardening when she fell and in many ways appeared to be functioning quite well before the break, also they thought she would go quickly and she is just as tough as my mum and kept living. The surgery wasn't presented as a failure but she got gangrene and took something fairly awful like 8 weeks to die (apparently she showed no sign of being uncomfortable). My own view is that her apparently good functioning was propped up to an extraordinary extent by her selfless partner and her own phenomenal will. Tbf without the surgery it might have dragged on even longer.

What does 'manage it in the community' mean? Surely an unoperated broken hip would be painful and the lack of mobility would quickly lead to bedsores, circulation issues or other problems?

Or does it mean they dose the patient up with morphine so they are never awake and pass away from dehydration in a few days?

Getting old is not for the faint hearted!

Yes, to be fair, the GP discussing "no hospital" with me was talking about open fractures with bits of bone sticking out, so the implication was other fractures could be dealt with by the care home.

HiPlease check your EPAs and LPAs are registered because I am having all sorts of 💩 going on.

Mum's GP said to me quite unequivocally that she was willing to manage any future broken hip in the community, without transfer or surgery. So it's not an unequivocal 'yes' to admission. But it would depend on the circumstances.

I had the opposite. 4 year old playing happily with the toys in GP's waiting room, only there because I felt I should show someone his rash. Told to take him to hospital, straight to children's ward. Still happy when I got there, within an hour he was limp in my arms. 4 weeks recovery. Whereas my dad this week has been more like a toddler.

@FiniteSagacity I know those tangential conversations well! Sometimes the end of a sentence is miles away from its beginning.

@PermanentTemporary We're very lucky that the nursing home GP is the same practice that my father was with, and that I'm still with. They've been really good at discussing him with me.

Yes, it was made clear to me that the "no hospital" directive wouldn't extend to things like fractures.

But today's A&E is no place for the elderly, is it? (Let's face it, it's no place for the sick).

It's so difficult. There's always a balance to be struck. The key person in my view is always the GP. I've known care home GPs who were thoughtful and excellent (and capable of pushing back against me and my sister combined, which I'm afraid is no mean feat) and I've also known a few who did seem to apply a rather routine approach to their care home residents.

@MereDintofPandiculation I think our DFs would get along well as DF loves railway history and also a tangential conversation ☕

I think I was the only person not lost for words when the carer agency asked if there was a DNR in place. But obviously I had to choose my words carefully in the moment.

I have greatly appreciated the experiences shared here that mean I know that a conversation needs to be had with DF about how he feels about these things and to get them down. DF is so frail that CPR would be physically and mentally very traumatic.

Unfortunately, I think DF’s recent trips to hospital have been thrilling. The first to A+E, while not pleasant seemed to be an Adrenalin thrill (not for those taking him for the out of hours marathon/nightmare it turned out to be). The second to a clinic appointment was like a day out. A stressful, rushed, prodded and poked (and thirsty and starving) day out but probably wouldn’t put him off. Which may be a turnaround from his 2023 adamant position that any trip to any hospital and he’d die in there so paramedics were patching him up at home.

Today DF sounds so confused and blatantly didn’t want to talk about what I called him about (more medical appointments), so today’s tangent was long spoons and knickerbocker glory glasses.

Mum HAS a no hospital treatment directive where it is something like pneumonia and she would need to be an inpatient. But twice in the last three months she has had a night in A&E having tests.

First she had a fall and hit her head so needed a CT scan and monitoring as she couldn't say what happened or if it hurt. That was19 hours in A&E. And then last week a night to see if she had a fracture and what strength pain relief she had.

They now think her current pain in back and hip could be arthritis or osteoporosis related. My fear is it will progress and they won't dose her up on enough pain relief and she will be uncomfortable or in actual pain. And I need to be her advocate from 200 miles away.

If your mind is going and your body is going then it's not a great life even if she is being well looked after.

Ah, ok, it’s a precautionary thing, bit like mum agreeing to a DNR recently. Something in place to ensure wishes are followed in the event of an emergency. Sounds like he’s “buggering on” for the moment.

It is scary how quickly our elderly relatives health can fall off a cliff. Bit like the reverse of toddlers who can be worryingly lethargic, cranky and running a very high temperature one minute and then up and running around their exhausted parents a short time later.

I’ve had a really good think about this, and realise this was before his repeated hospitalisations about 5 years ago, and his previous views were based on an ICU 30 years ago. He still wants to carry on as long as possible, but he’s been quite clear he doesn’t want to go into the local hospital, and, to be fair, the hospital experience when you’re old and frail, with poor hearing and declining cognition, is very different than for a young fit person with an illness or fracture.

He gave us all a worry at the weekend but today he’s back to normal, to the extent we had a coherent discussion about Gaza, even if it did trail off to Mumps in Oldham He can still teach me things!

Gosh Mere, that’s a change isn’t it as your dad previously expressed that he wanted to carry on as long as possible. I hope whatever the future holds for your dad, he remains comfortable and pain free.

The care home and GPs are really good with looking after her as per 'the rules'. But am sure if I pretended she was a dog and explained her health to a vet, the vet would advise that it might soon be kinder to put her to sleep. Doctor has just agreed to amend Dad’s details to “not for hospital” based on his most recently expressed views. You can’t, obviously, have them put to sleep, but there are things that can be done to ensure treatment is appropriate.

Thanks @FiniteSagacity and @popularinthe80s but the loss of my dad is not as recent as @SeriouslyAgain s loss.

And I am now in a different phase of caring as mum is in a care home so much less dad to day stress although I am gearing up for Round 2 as mum is deteriorating which is a worry. She is starting to be in pain but her dementia means she can't explain where the pain or what it feels like. So last week she spent a night on a bed in a corridor of A&E (with a carer from her care home bless them) while she had bloods and an x Ray to see if they could find anything. She was sent back with no diagnosis and given liquid antibiotics and painkillers as getting her to take tablets is now impossible.

The care home and GPs are really good with looking after her as per 'the rules'. But am sure if I pretended she was a dog and explained her health to a vet, the vet would advise that it might soon be kinder to put her to sleep.

Warmest love to @SeriouslyAgain and to @Choux . It's so hard, I know.