So bloody exhausted waiting for someone to die 2

@JamieFrasersSassenach it has been a battle but eventually the NHS put a ‘package’ of ‘Reablement’ care in place for 6 weeks for DF and if they do for your DM (as a return from hospital ‘safely home’ package) I highly recommend you step back so the services put in place see how DM copes.

We stepped in to help in December and it wasn’t helpful really as @SeriouslyAgain said, it can just enable elderly parents in denial.

By all means look at care homes - we have but we simply don’t have the funds to put DF into a care home ourselves. His own home is a millstone that is full of hoard and falling down, DF is gradually coming to accept it needs to be auctioned to release the value so his needs can be met. We have had to find a private sheltered accommodation option.

We have learned the hard way that we actually should have let the system step in - we didn’t want to be uncaring monsters at Christmas and DF seemed at death’s door just weeks ago - but we actually prevented him needing to go into hospital so that made it even harder to push buttons to even get reablement and adult social care involved.

But we have our own busy lives and our own families who depend on us to be able to work and to keep going. It has also become obvious we’re not able to provide the extent of the care DF needs - partly because he still thinks he’s the senior adult - so I do regret not stepping back and letting professionals do what they do.

As this thread shows, DF could have weeks, months or years (of poor health) left and you can’t take that on an hour away.

Hi @JamieFrasersSassenach Welcome to the thread no one wants to be on😂. It's not pathetic at all. None of this stuff is easy.

Hi @JamieFrasersSassenach
Have you looked at any nursing homes yet?

Hi, @TheShellBeach suggested that I come over to this thread.

DM 79 is in hospital with delirium caused by a UTI. She's been in for 2.5 weeks and we are now waiting for respite care to be arranged.

I am her only relative and live an hour away, have my own family and work.

She has been really nasty to me for most of the time she has been unwell and I'm just mentally exhausted by it all at the moment!

I know most of you have far worse situations than mine so apologies if I seem a bit 'pathetic.'

It would be nice to know that others on here know how it is and 'get it.'

I moved over 130 miles from home to be with DH, it struck me very quickly how many older widowed people there were in the area. All had moved to retire in the area and then their partner passed away they became so isolated from their families who had stayed in their home counties. It convinced me that it is a bad idea to be so far away from relatives in old age and as soon as DH retires in next couple years (hopefully) we will move back to my own area (his children have moved away and he's much closer to my family)

@TheMessThatYouLeftWhenYouWentAway I’m sorry you’re Dad is so unwell and can imagine how stressful this is. I know the end stage of any illness can be long and drawn out and often modern medicine simply prolongs things without improving the quality of someone’s life. I do think you need to have an honest conversation with your Mum about how all of this is impacting on your finances. You shouldn’t be expected to finance your Dad’s care. This is probably easier for me to say as my parents never helped me out and I had an awful childhood so feel less obligation. As @EmotionalBlackmail says you shouldn’t compromise your job or being able to pay your bills.

Oh dear @TheMessThatYouLeftWhenYouWentAway that sounds like an awful situation.
They sound really thoughtless and you've done your best to warn them about practicalities. It's not your problem though if they've chosen this for themselves, hard though that is.

Do they (or your Mum anyway) know how difficult it is for you financially to do this? It seems so incredibly short-sighted of them to move somewhere so impractical and yet then expect you to run around facilitating it.

Mine is at a distance but in the same country and I will not do anything to help that puts my own family's stability at risk - ie jeopardising my job and ability to pay the mortgage, putting my child in a worse situation by being absent a lot. It is incredibly hard (see username!) and my DM moans no end about it but ultimately she chose to live where she does and her lifestyle.

The lack of foresight is one of the most frustrating things. Neither of my parents ever had any. My mum didn't gain any even when my dad died. She remained convinced that somehow she would cope brilliantly for ever. None of the ensuing crises ever convinced her otherwise. But then I was enabling all of her nonsense. If I'd just let her fail, it may really have been better in the long run.
Sorry it's so rubbish for you TheMess.

@TheMessThatYouLeftWhenYouWentAway

Your mum could be right. If your dad isn't keeping anything down, he could easily get kidney failure. Or is he keeping fluid down?

I'm angry on your behalf WRT your parents' lack of foresight. And the money it's costing you.

Thank you for the supportive and welcoming messages. I'm over with my parents at the moment- it's exhausting and relentless, not to mention expensive (have to stay in a hotel in the main resort near them as they have no room at home), but then it's exhausting and relentless worrying about them when I'm at home in the UK too.

They sold up everything to move abroad and can't afford to come back to the UK - they also say they don't want to. They gave up British citizenship in order to qualify for the health service in their home country. Problem is that the health service only goes so far. It's a country with a strong culture of family values so nursing homes just don't exist, for example. I tried to have these conversations when they decided to move but they either brushed it off or got upset that I would focus on morbid and negative topics when they just want to live their best lives. Sorry if I sound angry. In truth I am. I don't resent them for a minute for following their dream - I think that's cool and admire them for having the courage, but it does make me furious that they did so without planning for this stage of their lives and now I'm the one making significant sacrifices.

I can't throw any more money at the situation. I'm already watching my savings pot decrease with the amount of nursing support I'm already funding, plus three visits per year, which is all I can afford.

Anyway, I don't want to hijack this helpful thread with that specific situation. I came originally to join the discussion about dealing with end-stage illness. I've been over here with dad for two days; he's barely eating and throwing up what he does eat. We took him out in the wheelchair yesterday- mum can't push it alone so he rarely goes out. He doesn't like wearing clothes - says everything hurts his skin - it's hot over here so he can get away with it but when he's out and about in just a pair of shorts, it's so obvious that he's frail and, well, shrivelled (horrible word). His catheter tubes are also obvious and it's awful when people stare - I go between getting embarrassed by him not covering himself more and then angry at the other people, thinking why should he be hidden away.

Mum is convinced he's going to go any day but I feel we have months yet to go - based on what I've seen with grandparents and with one of DH's family members. Can't help feeling that I hope mum is right though.

which means I’ll be 70!! I’m already older than that!
It gets easier as they get worse, if you can let them go into a care home.

@Hoplolly Difficult, but try to get on with your life. You can’t be on hold forever. And if you’re busy it’ll be easier to bear.

Two weeks after thinking mum was dying, she's ill again. Vomiting, not eating, sipping water. Very pale. Not talking at all (not that she really talks anyway). She can still walk (shuffle). I'm so tired of waking up every day wondering if today is the day I'll get the call.

@JaceLancs that's what scares me. Between our parents various needs we are now in year 10. My mum has alzheimers but still late early stage. She's 86 but comes from a very long lived family, late 90s not unusual, and has no other obvious issues other than vertigo. It could easily be another 10 years.

I reached a very low point today taking DM to try out a day centre which she wasn’t keen on - apparently there was too much sitting around and she likes to be more active (bearing in mind she lives in a tiny bungalow and moves between sofa kitchen bathroom and bedroom as little as possible)
I was a bit hurt that she decided she would rather attend a church event than have dinner with us for Mother’s Day and could I rearrange my diary to accommodate her needs
I took her out for coffee and cake and only realised after I dropped her back home that she’d had an accident in my car thankfully only urine but will still need professional cleaning
However it wasn’t any of this that tipped me over the edge it was realising that I’m now on year 6 of dealing with similar things - to try and fit all this in as well as my full time full on job, along with Dcat health issues (hopefully short term) my own many medical appointments - just means I get up early and end up working late other days
I am nearly 60 and far more exhausted than I should be
Sadly I don’t see things improving any time soon - I’m lucky in that DB, DSIL and adult DC share the load and we buy in what help we can afford - with dementia and no major physical issues we could easily be still like this in 10 years DM is 84 and DF was 94 when he died - which means I’ll be 70!!

@TheMessThatYouLeftWhenYouWentAway I really feel for the impossible situation you’re in and agree that the stress is likely to get worse once your father passes away. I think the financial
cost of adult children supporting elderly parents isn’t acknowledged enough. You sound like you’re at breaking point and shouldn’t be expected to sacrifice your life for theirs because essentially this is what’s happening. My parents live in the UK but a long distance away and I really struggle with the costs of the welfare visits. You sound like you’re doing more than enough so don’t be guilt tripped into doing more. Admittedly I find it easier to say no as I have a difficult and painful past with my mum and step father so I feel
justified in setting boundaries.

It’s not your fault they chose to live a long way away. Can’t they come back to uk?
is it for financial reasons they stay there? Is nursing care cheaper there? It’s also not your role to run your Mothers life once she is alone.
are they very old? And frail?
what you are doing at present isn’t suiting anyone. Can you arrange more nursing support and go less.

I’m sorry you’re in this situation @TheMessThatYouLeftWhenYouWentAway , it’s bad enough living a distance away when you’re in the same country. Wishing peace in their own ways for both your Dad and Mum.

The parents of some good friends talked about retiring abroad in the sun 20+ years ago, but my friends had a hard conversation with them about what their expectations were as they aged and health declined. I don’t know what was said, but the parents decided to stay in the UK. It may have helped that one of the parents had previously had cancer and although they were well at the time of retirement (and still with us today!) this experience may have made them more realistic about the prospect of ageing and health, navigating health systems in a foreign language as faculties decline etc.

Hi all. I’ve name-changed specifically for this thread but am a long time MN user. I read the whole of the original thread and spent a lot of time trying to work up the courage to join in and find the words to post honestly about my situation. Then I lost the thread. This part 2 has just popped up in Active and I hope it’s ok for me to finally join you here?

I’m waiting for my dad to die – prostate cancer, endstage kidney failure and dementia. It’s been a long road and it seems we are finally near the end. He spends most of his time sleeping, barely eats and is very confused. Every few days however, we get long periods of almost-lucidity. Mum thinks he’ll go any day and she’s in a terrible state. Personally, I don’t think we’re quite there yet – from what I’ve seen from grandparents and family on DH’s side with similar situations, the end takes much longer than expected, especially with the regular lucidity.

The main challenge for me, apart from all of this being quite upsetting is that my parents live abroad. They are UK-born and retired for a life in the sun nearly 30 years ago. They don’t live in a particularly easy to reach location – no cheap flights to pop over for a weekend. I therefore don’t have the constant care expectations that other posters here do but mum is upset that I’m not there to help out. Dropping everything is just not an option for me and it’s costing me an absolute fortune every time I do fly out to be with them. I therefore get accused of putting my job, money etc ahead of caring for dad and it’s horrible and far too simplistic an argument.

So, I’m waiting from afar while he is endstage, trying to get involved in any way I can – I have calls and online meetings with his doctors and do what I can to make arrangements to take the burden off mum (e.g organising and paying for a home nurse to help with some personal care) but it’s never good enough. I feel I have no life for myself. I’m either working (it’s an industry I’ve always loved and will do again but it’s demanding and right now I feel like I’m drowning) or using every scrap of annual leave to go to my parents where I try to ease the burden on mum by taking over all his care which is intense, relentless and upsetting and then, when I head home to start the work cycle again, I get yelled at for not caring enough to stay.

When I say Dad is lucid, I mean that he has periods where he is alert and knows who we are but he is abusive and argumentative as he’s so frustrated by his situation. He also can’t retain any information and every interaction is a struggle. I identify with the PP who spoke about the looks of pure hatred. It’s like he resents me and my mum for being healthy when he is like this and resent me even more for not being around. He fights us when we try to give him medication, care for him, lift him. He is doubly incontinent and although we now have some help with personal care, this is still an issue. Mum is fit and well and I worry about her dealing with all of this more or less on her own but then she gets angry with me for my sporadic visits and it’s hard to want to help her when she is so angry at me. I feel physically sick which anxiety through the roof whenever I do take a trip to see them. I worry about the future when mum is on her own and she wants to depend on me even more but I still won’t be able to meet her needs.

"Reclining Rolls Royce"

😂

I chose my mum's care home a few weeks before my dad died as it was clear he would not get better and that mum could not live alone after he was gone.

When he died I had to live with mum as her carer 200 miles from my home while I waited for a place. The care home I was waiting for a place at said that I could take her for day care while they waited for a room for her so I could work, sort dad's funeral etc. The cost was 1/3 of the daily rate so 1/21st of the weekly price.

You could always ask if she could spend a day or two there as a trial. Then you can see if she enjoys it which will really help you not to feel guilty. You are trying to do what is in her best interests and a place more suitable for elderly living is likely in her best interests if the activities and staff are a good fit for her.

@Valleyofthedollymix did you sack the carer in the end?
And I'm assuming you didn't buy the expensive chair.

Ha and mine! I was the one with the cashmere jumpers and rolls royce riser recliner dilemma.

I really appreciate what you're saying Seriously as someone who's a few steps ahead. We're looking at two care homes next week - mum says it's what she wants (to be closer to us), the GP has told me to do it sooner rather than later given the progression of her disease and treading water is no longer an option with the fact that she needs to move rooms, get a wet room etc.

In an ideal world I think she'd have moved into suitable accommodation a few years ago and then the care at home would have been more feasible. Now I think what's the point of a lovely home if we need to move her into a small portion of it.

It's so hard to make the decision though. I have to make it for my mother and the responsibility is heavy. She says she wants to move but I think she'll be unhappy. But then she's not happy now either. I worry that she changes her mind depending on who's she's talking to. I also worry that I've got self-interest - I just loathe dealing with all the house admin and the carers so much, as well as the long journey there.

ARgggggghhghghgh

And yes @StiffyByngsDogBartholomew that's the one! Reading that makes me laugh at the absurdity of it all!

I've got to find myself a backbone😂