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

@funnelfan. Personally I wouldn’t tell your Mum that you’re going on holiday. When my Mum was alive there was always a crisis whenever we went away. Although we never had to return early we were always on a knife edge and having to keep in regular contact by phone meant it didn’t feel like a break. I wouldn’t trust the care agency not to ring you either. Maybe consider keeping your phone on silent and only checking for calls once a day. I hope you get to have a restful and enjoyable break.

Yup, the holidays thing can be bad. DM managed to have a crisis with her tooth on the day I left this year, then tried to call me the day before I left, I checked with my sister and my DF has been a little ill but not about to die (and even if he had I couldn't have done anything). DM claimed not to know I was still away

My parents used to go on a month long holiday over my birthday every year (DM now expects a massive fuss about her birthdays!). One year I has an ectopic pregnancy and needed emergency surgery and asked my family not to tell them as I knew they'd just create more stress and there was no point.

I told my mum I didn't want to speak to her unless Dad was really ill. She's repeatedly tried to get in touch with me anyway and sent a message late at night to my sister asking to join in a visit to my Dad. My sister's still undergoing checks for cancer and has asked her to contact BIL instead, but that's getting ignored too.

@HoraceGoesBonkers I’m sorry your Mum is causing you so much stress and constantly ignoring or overstepping any boundaries you try to set. There’s just no easy answers or solutions to this and dealing with it all isn’t easy if you’ve had a former difficult or toxic relationship.
I’ve managed to sort out an electrician but really didn’t want to be doing this on holiday but my step father would have ramped it all up as he’d already got the neighbours involved so I felt didn’t have much choice.

@AgitatedGoose Thanks. I think my DF must have talked her down from doing things sometimes (not all the time unfortunately) as the boundary crashing was always there but has gotten worse over the last few years as he's gotten progressively more ill.

I'll explain really clearly I don't want her to do x, y or z thing (always some sort of difficult behaviour most people just wouldn't do... non emergency very early/late night messages, unexpectedly phoning and putting Dad on, turning up at my house and posting stuff through the door because I didn't respond to a message quickly enough for her, turning up early and then trying to pressure me into dropping what I'm doing to meet her early rather than just sticking to an agreed time) and she'll always have an excuse about why she's had to do it, then will normally have some more goes at the thing I've asked her not to do, then doesn't understand why I've reduced contact.

I asked her if she'd like to chip in for a present for my sister when she had her first hospital appointment, this was before the cancer was confirmed. My Mum's first response was to roll her eyes and say she thought it was unlikely to be cancer, then she caught herself and agreed. But it was like she resented my sister for taking the attention off her and DF.

DF's progress between home, hospital, home with carers, hospital and then a care home was so, so much more stressful than it really needed to be because of all the extra weird behaviour on top. I'm not wanting to go through it all again with DM and I've spoken to her about having a plan for the future but I suspect everything will have to happen with the maximum level of fuss and drama.

I hope the electrician sorts things and you have a smoother holiday!

Repeat after me.... very slowly
NEVER TELL THEM ABOUT ANYTHING..
No upcoming annual leave.
Never tell them when and what time exactly you are coming.
If you are going away (obviously organise care first).
Never discuss anyone in front of them.
NEVER DISCLOSE ANYTHING THAT YOU DON'T WANT REPEATED OR DIVULGED.
In my time of being a Carer in the Community we got wise to the games, and we were actually instructed by our Employers to never mention if we were going on holiday, the folks we were looking after more often than not played up very very badly.
Basically with troublesome and difficult older folk you treat them as you would children, never discuss anything private in front of them, never discuss plans that don't involve them and be wary of them trying to listen in on private conversations. Not all older people are like this in any way, but for those that are, you have to careful, discreet and guarded in what you tell them.

I spent thousands and thousands on hotels.

A couple of years ago I had quite a hard conversation with DM about money as I'd spent a lot on hotels, travels and incidental expenses for months.

The final straw was the middle of the night hospital run in a taxi because DF might die, where she got BIL to call me to demand I go and disturbed their holiday, then when I was getting up and dressed I got a call from a nurse saying I needed to go.

When I got in DM was withdrawing the maximums she could from DF's accounts (he'd been sick for ages so Christ knows why the bank accounts weren't sorted years beforehand), in case in the event of his death his accounts were frozen.

Later on I said my husband would pick me up, DM said I could get a taxi back without offering to pay, I said the taxi in had been £25 and she 'generously' offered to pay one back, knowing DH was on his way, without offering cash for the one there.

Anyway when I brought it up later she pretended she hadn't realised I'd been spending a lot on travel and expenses when I brought it up, obviously the magic pixies were paying. She did transfer some cash but I just felt a bit sickened - it was ok for her to be concerned about money in an emergency but not if it was coming out my family's budget.

Hello all, sadly joining this thread as now having to try and sort things for 90 yo DM that refuses to have carers coming in and refuses to go into a home, just wants to rely on her long suffering neighbours (that’s so not an option).

Diagnosed with heart failure, I’m thinking it’s likely end stage but no idea as DM won’t talk about it and currently there’s no consent for any professionals to discuss it with us. She told us social services and district nurse were visiting yesterday, turns out that was not true. Can’t decide whether she’s genuinely confused or deliberately not telling the truth.

I’m 5 hours away, my DSis is 2 hours away, yet another emergency run up there today to sort out the latest catastrophe (DSis arrived yesterday). God knows what we can get organised because she’s resistant to everything and tells the professionals its all fine and she’s managing (clearly a lie). The house is filthy, so that’s something else to have to sort out (although we want social services to see it first).

Survival tips gratefully received.

Hi @Sabrina
No great words of wisdom I'm afraid, but am in same situation with MIL.
Any suggestion of outside help is met with responses of 'Oh I'm not ready for any of that yet!' and DH is an only child who loves his mum, so off we go again!
We are 'lucky' in that we're older so no young children to consider and we're self employed so have more flexibility than most, but it can still be a strain at times.
Can you and your sister firmly tell her that if she wants to maintain good relations with her neighbours she will have to rethink her situation.
We've found with MIL a bit of gentle pointing out that perhaps she needs to consider others a bit will get her out of her self absorption, at least for a little while!
She's really not being fair on her neighbours, and if she's made aware that she's being a burden to them, then her self respect might kick in a bit and she'll reflect a bit.
Good luck

Hello @SabrinaThwaite and welcome.

You're among friends here.

Thanks @TheShellBeach

I’m just so cross and frustrated.

At least I can take the car keys away now.

I know exactly how you feel @SabrinaThwaite, but it does help a bit to vent on here and you are amongst friends!
Hope your visit goes ok xx

Thank you. I have a feeling that I will need to vent!

Hi @SabrinaThwaite my dad was diagnosed with heart failure at least 6 years before he died aged 83. Two years before he died was getting confused and we took him to the memory clinic for evaluation. The clinician diagnosed him with both Alzheimer's and vascular dementia.

The vascular dementia was diagnosed without any brain scan etc but was due to his poor heart health not delivering enough oxygen to his brain and cells starting to die. His EF was probably about 40% or less by this point although I am guessing at that as he didn't have an EF test after the age of 77 when it was 45%.

There is no treatment for vascular dementia other than get the heart related medications right so blood flow remains optimal. Is there any chance your mum would give you or your sister written consent to discuss her health with her GP? When did she last have a medication review? Is she still able to take her medications correctly without any help?

The gateway to my parents accepting help was needing help with medications. My dad couldn't accurately fill the weekly pill boxes for him and mum - they were on about 15 tablets a day between them - so we arranged dosette boxes from the pharmacy. But dad couldn't go across the box to the right day and then down to find eg Friday lunchtime's tablets so he accepted someone just to pop in to give them meds. Once he realised he liked seeing a friendly face once or twice a day it got easier to slowly expand it to cover providing food, doing personal care and then finally getting a cleaner.

I know some elderly people are barely on medication so this won't be an option for everyone.

You're right @Choux, this is exactly what happened with a friend of mine's elderly aunt who was formidable in her fight against recognising her mental decline. She is now perfectly happy with her carers twice daily visits.
It must take a while to fully accept and understand that you are losing the ability to fully take care of yourself, especially when, like Auntie, you were a bit of a force to be reckoned with all your life.

I did a lot of gentle manipulation:
Making sure your meds are right is the most important thing. If you have taken the medication properly then you will feel strong and have the energy to look after yourselves well.

I just want you to be as well as you can be.

Dad - I think we should get the doctor to check all your medications are correct. Can I make an appointment for you? Then we can go together. (Then pre warn the GP to ask about dad giving permission for them to discuss things with me as dad would not argue with 'a medical person'. And the permission can be quickly scribbled out and signed on the spot).

Hi @Choux my DSis and I are planning to get DM to write a letter giving consent for the GP to share medical info. Her neighbour has told the GPs that she has serious concerns (small practice, they seem to know their patients quite well).

My gut feeling is that she doesn’t have dementia but is suffering delirium / confusion when her sats drop. I think she’s been in heart failure for a while but that over the last week or 2 it’s become acute (she has all the symptoms).

I know she takes meds but no idea what. I’ve asked her but she starts rambling on about other things as a distraction. Her GP is very good but DM has taken the huff with her (not unusual), fortunately she seems OK with the new male GP (she listens to men but not women).

The trouble is she has capacity but no insight into her own condition. She’s a bloody liability.

Gentle manipulation doesn’t work, been trying that for years. DH reckons she’s a borderline psychopath.

Maybe I’ll take the tack of somebody coming in to make sure the cat gets fed regularly!

God, I really hope it’s not another 6 years. She already thinks she’s going to live forever.

My dad was younger and also got a new pacemaker 6 years before his death which helped him a lot.

Perhaps she has a UTI which needs treating as that can cause confusion. It's good that the GPs are being alerted to concerns about her. Perhaps she needs to be called in for a well woman check 😉. Dr can then look at memory, possible UTI and a medication review.

Can you rummage in the cupboard where she keeps her tablets or ask if she needs any shopping or prescriptions getting and see what meds she's on.

Also are POAs in place? They need to be done while she has capacity.

We can only guess, because we don't really know but what seems to happen with MIL is her electrolytes go out of balance sometimes and that causes all sorts of issues. We've found that Zero sports tablets can help her feel a bit better, @SabrinaThwaite.
She's 93 and has had heart failure for years and also has full capacity, so is well aware that she's ailing, but because she believes she's going to die imminently she has a lot of anxiety as well. When we called the paramedics a few weeks ago, they said she was nowhere near EOL but we don't seem to be able to reassure her., We're about to try to persuade the gp to give her more than 1 diazepam a week because she's so much better when she has that.

Welcome @SabrinaThwaite , this thread and the cockroach cafe threads (we have gin there!) have been lifesavers for me.

mum only accepted carers when she finally acknowledged she wasn’t managing her food and was getting the neighbours to occasionally do it, who thankfully told me their concerns. She went from 11 to 7.5 stone. We had one private visit a day to cook her tea but a crisis and hospitalisation resulted in council commissioned care four times a day. Plus she finally got diagnosed and on the right medication. She had to accept the carers as the hospital told her she want going home without them.

Thanks @choux, @MovingSwiftlyOn and @funnelfan .

We have the financial LPOA in place, but not the health one. She’s been in to the GP twice this week, but it was a neighbour that drove her so no idea what was covered. GP gave her the HF diagnosis and diuretics, but you’re right it could be electrolytes out of whack - will pick up rehydration tablets.

And will have a rummage around for tablets.

My DSis has wine at the ready!

Quick update: DSis got DM to write a letter adding us to her records as emergency contacts and giving consent for GP to talk to us. GP rang and spoke to DSis so now we have a much clearer idea of what’s happening - either GP told DM and she has blocked it out or she didn’t understand, but her short term memory is all over the place and she has only ever heard what she wants to anyway.

GP wanted her in hospital straight away but DM refused to go … for reasons (didn’t hear any of this from DM, but she might have blanked it by now anyway). So still trying to sort some kind of home care because neither of us can stay that long due to work and family commitments. District nurse needs to come out to take bloods and emergency echocardiogram requested to confirm preliminary diagnosis (which is not good).

DSis made good on her wine promise, so that was a relief (for both of us).

You got the GP letter sorted quickly. You and your sis getting a clearer picture of the medical status at least stops you wondering and lets you start working with her to plan things.

You may already have seen the below page from the British Heart Foundation.

www.bhf.org.uk/informationsupport/conditions/heart-failure#trea

You mentioned a recent diuretics prescription - are her legs swollen? When my dad's legs were really swollen in 2018, he was treated as an outpatient and went every morning for 10-14 days to have a diuretic infusion. He pee'd out about 1.5lbs of fluid every day which made his walking and breathing better. The fluid retention was too severe to be easily corrected just from diuretic tablets - it would have taken months - but I don't know if all hospitals offer that.