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

Checking in to lurk.

Checking in from the previous thread.

So sorry @AgitatedGoose for your loss and the actions of some of your family.

I need to vent. DM has been home for about 11 days, her delirium definitely is much much better, most of the time. But she is driving me mad with her heating.

I have set it to 24.5 degrees 24 hours a day because that is what she wants, it's tropical in her house, but she feels the cold and likes to wear a t-shirt or blouse with no jumper or cardigan at home. Because it's so hot in there the radiators turn off, cue phone calls and texts telling me that the heating is not working and how cold the house is.

Today when this happened I looked at her hive online - it was 26.5 degrees in her house, and she was complaining that the radiators were cold. It turns out she has had her electric fan heaters on to warm the room up.

I phoned the carers doing her re-ablement and asked them to check the heating when they next went in.

They phoned back - in the house can't find the thermostat, explained where it is, they confirmed the temperature and that the house is very warm. I explained my concern that maybe DM is unwell if she feels cold in such a warm house. DM goes ape with me for interfering and making her out to be a liar.

How do I cope mentally with her moods? I am a 'solve the problem' type person, but I get so confused when she gives me a problem and then gets angry when I try to solve it.

Honestly it makes me want to run away!!!

My mother was a bit like this, non-communicative and bed-ridden after a stroke, and fed through a tube. But she was tough as old boots so tube-feeding just gave her the right nutrients to stay alive. It went on for several years, the nursing home saying there was nothing they could do. IMO, of course they would say that, with my mother's money pouring into their coffers...

But one day I bumped into her GP, who advised that quite often the feeding tube comes out. Normally the home just puts it back in, but he advised that I could express the wish that if the tube came out, it wouldn't be put back in. If the patient doesn't have an LPA and is not able to make their own decisions, the home and the doctor have to at least take into account the views expressed by next of kin.

So I wrote the letter, thinking it would be months before anything happened. But the tube came out in a few weeks, wasn't put back in and she died in about 10 days. It was such a relief.

I’ve just posted in the cockroach cafe that my independent and fiesty 80 year old MiL is very suddenly seriously ill in intensive care with cancer. I’m processing all the usual feelings about this, trying to support DH who is by her side, 300 miles away (he wants me to stay here).

And yet there’s a tiny part of me that’s jealous on my mums behalf, that MILs exit from this world won’t involve the long, slow, inexorable decline in her mental faculties and loss of physical function and dignity. I think I can only say that here.

@JamieFrasersSassenach i can relate, my DF would turn the heating on to the max even if it was warm outside, it would make me feel ill going in there as the heat was suffocating! He had delirium so I wonder if the two are linked? As now he's in a care home and will wander about in the courtyard in just a jumper and tracksuit bottoms even when it's really cold. The care home is still obviously kept very warm but not to the temperature he kept the house at.

@funnelfan i hope your OK.

Checking in. Hope everyone can find some element of peace and calm this weekend. Everyone deserves it.

*How do I cope mentally with her moods? I am a 'solve the problem' type person, but I get so confused when she gives me a problem and then gets angry when I try to solve it.” Can you reframe the problem? The underlying problem is “my mother keeps hassling me”. So instead of trying to sort out her management of the heating, work out how you can engage with her enough to get her off your back. “I can’t do anything tonight, you’ll have to put a rug round yourself“. Get a separate phone for her calls, and switch it on for limited periods.

maybe she just wants sympathy. It’s really upsetting when you look for sympathy from a “problem solver” - the solution comes over as “all you have to do is this. So it’s your own fault you’re suffering”. Maybe a few repetitions on the theme “oh, that must be so difficult for you” would be worth a try?

And yet there’s a tiny part of me that’s jealous on my mums behalf, that MILs exit from this world won’t involve the long, slow, inexorable decline in her mental faculties and loss of physical function and dignity. I think I can only say that here. Cling on to that thought. It’s a helpful one

@JamieFrasersSassenach I know for some people with alzheimers the brain just doesn't register that it's hot. My mum has the thermostat set at 27 and I sit there sweating in a t shirt but mum has a warm blouse and a thick jumper on. The number of times she's thought the heating isn't working because she's put the electric heater on as well is beyond counting. Perhaps the delirium has had the same effect on her brain.

@MereDintofPandiculation I get exactly what you mean, but she phones me asking me to get her heating to work again, so she is actively asking me to solve the problem for her.

She has left me a voicemail this morning thanking me for making her house lovely and warm today.

It's almost as though she believes that I have some heating superpower, and that I am refusing to use it!!

That sounds so familiar. She has kept a warmer house for the past few years (she is 79) but this is at tropical levels now. And she seems obsessed with the radiators being hot to the touch, and will not accept that the house is warm otherwise.

A few months before dad died mum was nagging him to bleed the radiators when I got there because they weren't hot to touch. Dad was 94, had advanced heart failure, needed a frame to walk across the room and could barely get out of his chair unaided. It was tropical. I pointed out ghe thermostat had kicked in and dad was "of course, why didn't I realise" but mum just looked at me blankly because all concept of how they work had gone. Just like she couldn't get to grips with dad not being able to do stuff anymore.

Mum is the same with respect to tropical temperatures. Last week her room was 24°C, she was in bed under her winter duvet plus blanket with a heating pad, thick pyjamas and said her feet were freezing. Also panics when the radiators aren’t hot and has lost the ability to understand thermostats or the timer on the boiler. When she’s hot she just opens the window and lets out all the expensively heated air.

i presume the heat thing is her brain losing the ability to interpret the messages her body is sending her, similar to her not really getting thirst or hunger.

Weekly visit to mum. Since Christmas on a good day she's probably eaten 350 calories, at least some of which goes to her chest. She can still look at photos and clearly to some extent can interpret them, but didn't speak today. I don't see how she is surviving. I hate it. I counted today and it's 2.5 years almost to the day since her stroke. But she's still smiling at me.

I am gearing up courage to read the Matthew Parris article in the Times about assisted dying. From what I can tell, it's rightly being condemned because it's looking at people as economic units in judging whether they should be alive or not. I don't want that. But I do believe that Mum has not had a vestige of quality of life in the past 30 months. Maybe I would be condemned too in the court of Twitter.

The trouble with having the heating cranked up to the max is that most of the care is being done by their midlife female children who are going through the menopause. I also have IBS and extreme heat makes it worse.

Because it was mentioned on a previous thread.

https://unherd.com/newsroom/assisted-dying-advocates-are-losing-their-compassion/

I support assisted dying after watching how my Mum suffered with Alzheimer’s I wouldn’t want this kind of indignity myself. I definitely wouldn’t want to be a burden on others or the struggling health service.

My mum is like this..
Desperately needs help, goes mad for us 'interfering'.. it is so hard.

Hmmm… take out a radiator or two so the radiators can run hot without overheating the house so much?

I tried that this winter, shutting the doors of the rooms mum didn’t use and turning off the radiators. Mainly to try and limit the gas bill. Didn’t work because she just wonders why the door is shut and opens it. I have told her multiple times but we were never ones for shutting doors at home during the day.

I put a post on the Elderly Parents board a while ago asking if there was some way to limit the thermostat on mum's heating so she didn't bankrupt herself and could continue to stay in her assisted living apartment with the extortionate management fees. I got some horrible replies making out I was the worst daughter in the world. She's in a home now but I was going to ring a heating engineer to ask.

I got some horrible replies making out I was the worst daughter in the world
@YouMustBeHappyNow people just don't understand. You can vent on here and nobody will judge you.

Sorry you had that. There are some awful goady posts on MN these days. The long running support threads (here and the cafe) are where you can find women going through the same battle and get a genuine reply to your questions.