So bloody exhausted waiting for someone to die 2

[StiffyByngsDogBartholomew]

https://www.mumsnet.com/talk/elderly_parents/4866628-so-bloody-exhausted-waiting-for-someone-to-die?page=1
Carrying on from our original discussion

Stairlifts have advanced, and you are no longer left with holes in the wall

Oh gosh, yes the adding value to the house. We’ve already got one of those lifts that looks like a shower squatting in the corner of the living room and grab rails and complicated ramps to get outside. Every time we put one of them in my parents would said of course, this is definitely going to add value to the house.

In reality, it’s right by a load of sought after schools and there’s a waiting list of families looking in the area. They’ll be ripping everything out, starting with the inexplicably, small kitchen that my parents had made next to a large unused dining room.

I used to bridle stupidly at the illogicality before realising how mean spirited this was. Now I enthusiastically agree, along with any other mad plans that won’t happen.

I'm slowly removing some of the disability stuff from my mum's now she can't walk. It was all a total pain. Either badly fitted, or ridiculously expensive and my mum hated it, or used for about a week before she went downhill and it was useless!

I assume that whoever wants to buy my mother's house will want to rip everything out. I can contact the lift company to get that removed when I need to but there'll be lot to dismantle.

@seriouslyagain - I can't remember where you are with your Mum? Is she staying at home despite being unable to walk? This feels like the line for going into a home for my mother so I was wondering what your thought process was.

@Valleyofthedollymix
Yes still at home with live-in care. Posts up thread really are making me doubt myself though!
I'm basically being guilted now into keeping her at home by the carers! Could get away with moving her now because she's got no idea what's going on, but they keep telling me off and saying that I've got to abide by her wishes (which were to stay at home at all costs). I guess they would say that wouldn't they?! 😂 I'm pathetic!
I feel your pain re all the house stuff - I keep looking at the hideous stair lift and thinking might as well rip it out now mum's downstairs. But a couple of the carers have been very very large and I think were using it as breathless on the stairs 😂

Valley, I also think that if you're at the stage where you havent yet done, but are thinking of doing, major adaptations, that may well be the point to move her. It's no walk in the park getting eg a wetroom put in, pretty expensive, and is something different, and therefore scary, to get used to just as dementia means they can't cope with change (even with 2 carers, it's impossible if, say, they're terrified of the new shower, and decide to go stiff as a board in the wheelchair or throw themselves away from the water...)

@Valleyofthedollymix If the lift is less than three years old you may be able to sell it back to the installers. If it’s older than that, they’ll charge you. We were quoted £125.

@SeriouslyAgain is it your mum with billions of cashmere jumpers and a smoked salmon habit cultivated by the live in carer ? If so I'm not surprised they don't want to get off the gravy train. If they re now guilting you as well I think it's clear they aren't acting professionally and even if your mum stays at home it's either time for a rocket up the agency's bum or getting a new agency in, making it quite clear to any new agency why you sacked the last one so they know you won't be taken for a fool.

as if things aren't hard enough without carers being an additional issue...

I've got to find myself a backbone😂

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

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

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

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 it was your mum and her Reclining Rolls Royce I was thinking of

"Reclining Rolls Royce"

😂

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.

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.

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.

@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.

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!!

@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.

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.

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.

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.

@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.