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

If you had a BG Hive system you could adjust the thermostat from your phone and see the actual temperature in the room where the thermostat is. Basically, you can control the whole heating system remotely, including individual radiators if you add the Hive radiator valves, and turn lights on and off.

The pics show my house in Reading, from my phone in Azerbaijan:
Overview - the temperature upstairs and downstairs, heating is off in both cases but hot water is on (the orange blob)
Downstairs - thermostat is set to 20, temperature is 20.1. Also you can give the system a quick boost from here. DD has bumped it up from 19 that I set up yesterday, because she wanders around in shorts and T-shirt complaining that it's cold, and I just now moved it back to 19. She had it at 24.5 a couple of days ago but I vetoed that and turned it down myself!
Detail - temperature over time, the blue bar on the left shows if the boiler/heating is on or not. So basically, upstairs is way above its thermostat setting because heat rises from downstairs. Also I found that a desktop PC pumps out a lot of heat upstairs. Downstairs the boiler is on and off regularly to maintain the temperature at or close the the thermostat level.

So with this you can tell aging parents that you adjusted the thermostat and actually do it, and keep track of what is actually happening.

This is such a brilliant thread. I think it should remain a permanent fixture as it's vital that we can offload. IRL, few to nobody, understands what some of us have gone through. Thank you so much OP for starting it.

Amen to the need for this thread. Just like the last bank holidays, DF is in a mess of self-neglect and resisting help from carers - at a time when nothing practical can easily be done. We’re on the edge of crisis constantly.

DF is so far from the DF I knew (who was difficult enough to love in the past at times). Now so incredibly self-absorbed, no awareness of the impact it’s having on others or how much damage it’s all doing to relationships.

I’m currently wondering whether to pull the trigger on an Adult Safe-guarding referral or not. Will it make any difference? What happens?

Past DF had to manage some of his own mother’s situation and swore he would not do the same to his family. But history has repeated itself. There’s no way he’d want the indignity he’s currently going through.

A colleague asked if I thought he’d given up and I sometimes wonder if the self-neglect is his way of trying to find a way out - but we’re obviously seen as monsters if we don’t try to fix things.

Can I (sadly) join you? My aunt (87) who is childless and widowed has dementia and after refusing any help for years, getting robbed by people pretending to help her finally tried to take her own life 2 years ago and ended up in a care home.

She is doubly incontinent and whilst she is physically pretty good, her mind has gone. The worst thing is the repeating what seem like plausible stories, except they are all untrue and change every time she repeats them, which is at least every 15 mins on a good day, every 2 mins on a bad day.

She cries all the time saying she wants to go home but the home she is talking about is her childhood home. She is hateful to most people but lovely to others.

She has 15 neices and nephews and 4 siblings but I'm the only one who bothers with her as she was a horrible cow to everyone her whole life.

I spend my only day off every week going to see her, to hear her slash me off to my face thinking I'm someone else.

Recently found out she had been put on blood pressure medication, why oh why. She wants to does, she hates her life, it it's exhausting. But I still feel terrible saying that.

That's rough. Honestly, I'd not visit her, or at least drastically cut it down.

In @JamieFrasersSassenach case you wouldn’t want the doors shut - the point would be to try to keep the radiators hot enough to satisfy the mum without overheating the home too much. Though the radiators would have to be removed, you couldn’t just turn the thermostats down and leave them cold..

I don’t think it’ll work, there’ll come a point when heating is unaffordable.

I’d go ahead and make a safeguarding referral to social services so at least your concerns are documented. They are suppose to investigate any safeguarding referral but in my experience this is fairly minimal unless children are involved. If you can I’d get neighbours to ring social services as well as they often take more notice the more referrals they get. I made quite a few calls regarding my Mum in the early days but they only started to act once the police were involved as my Mum was wandering the streets half naked.

@FiniteSagacity if there's a safe guarding issue things do seem to move fairly well, we were being physically threatened by DF due to his dementia and SS said DM was unsafe being left with him. They did initially ask us as a family to stay with DM 24 hours a day and we tried but it just didn't work for us and DF was becoming aggressive to us as well. I think SS were waiting for us to say no we can't do this anymore and they then stepped in and DF was sectioned

@AgitatedGoose how are you?
I know you haven't had the funeral yet.
You must be feeling like you're in limbo.

@AgitatedGoose

Thank you for asking. I feel absolutely exhausted but think I've got everything sorted for my Mum's funeral next week. I haven't seen the eulogy which the minister is writing yet but am hoping it will be ok. Still no word from Mum's side of the family but my lovely next door neighbour made a gorgeous hamper of food and my husband has made sure I'm eating. I have to go back to work tomorrow although I don't really feel like it but will otherwise be on unpaid leave.

At the risk of crashing into this , I am 18 months after the death of my very elderly parents. I reckon the best part of 20 years was spent worrying and now the grief hits.
One thing that resonates with me is this plea not " to be put into a home" It really is so selfish and the language so emotive. It was far too late, when it eventually happened and unbelievably expensive. The levels of denial and colluding by neighbours and others was something else. Selfish behaviour really. I'm exhausted. Sorry for anybody struggling.

Hello @eggplant16 and welcome to the thread.

I doubt if anyone who hasn't cared for elderly parents for years can possibly understand the toll it takes on your mental, physical and emotional health.

Middle aged women everywhere are crumbling as their own health deteriorates. The caring burden takes years off our lives.

Thanks for the welcome The Shell. In my case....old age really not middle!

So sad, my once vibrant and extremely annoying parents became awful really. Plus a 3 hour journey to travel.

What happened in the end?
Care home?

The end was hideous. One died in complete denial up until the end. The other dazed and confused had a fall too many. Care home. Desperate.

Eggplant you still sound horrified and distressed.

Its been a rough couple of days tbh. Thought I'd got straightened out mentally.

@eggplant16 Welcome to the forum. I totally empathise with the ‘don’t put me in a home plea and agree it’s totally selfish. I was lucky that my late Mum actually asked me to find a care home for her during the early stages of her illness. I really don’t think parents should hold their adult children hostage like this. People with complex illnesses really do need a team of people looking after them and more importantly ones who can go home at the end of a shift.

Thanks AgitatedGoose. I feel a little better and less alone. There was an absolutely beautiful Home near by that I visited many times, unannouced. But no, it was deemed unsatisfactory.

Wailing " Eggplant wants to out me in a Home" Rubbish.

But maybe they don’t actually want a team of people looking after them? Maybe they’d prefer to take their chances and retain their autonomy?

Mere, I know you like to give the perspective of the older person, but in the case of @AgitatedGoose and @eggplant16 it very much sounds like it was a case of “needs” outweighing “wants”.

particularly when you also consider the needs of the people/family asked to take on caring responsibilities, not just the needs of the elderly relative.

The problem is that, often, the amount that children do for the parents slowly creeps up as the parent(s) becomes less capable.

With my dad he had swollen legs in 2016 which he didn't tell me about until I saw how unwell he was. I got involved in helping him navigate the GP and cardiology resulting in multiple medication changes and an operation to fit a different pacemaker.

I thought I was only helping him get back on his feet but then realised mum's dementia was pretty bad and dad needed support for her. Mainly moral support at first but then more stuff landed in my lap to free him to just take care of her.

Soon I was navigating mum's dementia diagnosis to get medication , attendance allowance application, all medication requests and medical appointments, Covid online grocery shopping (which continued for 3 years), blister packs, parents not being able to understand the blister packs, pushing them to accept a carer twice a day to dole out the meds, attending about 10-15 hospital appointments a year with them, stopping dad driving, a second dementia diagnosis, a second attendance allowance application, more frequent carers, legs swelling again with no viable treatment options this time, Intensive Care at Home service, district nurses, care home selection for mum in prep for dad passing away etc etc

And all that is on top of visiting and staying with them in a dirty house I had to clean on arrival, sorting out any house or car problems, trying to spend quality time with them while working full time from their house. Neither were suddenly incapacitated so the amount I was doing just crept up over 7 years until I was reaching breaking point. And while they were incredible grateful, they became so focussed on their own needs and health issues that they couldn't see the burden it placed on me.

Maybe, when it's impacting on other people that's not really an option. My Aunt would ring me 8-10 times a day when I was supposed to be working in some crisis or another. She didn't have the capacity to understand what was going on. Maybe I should have taken her at her word and let her die in squallor at home alone?