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

@HoraceGoesBonkers my mum is an example. She had quite a few falls. She's been able to get herself up and no injuries worse than cuts and bruises so far thankfully. But last week I took her to the falls prevention clinic. While we were there she was all simpering agreement with the OT recommendations. Get her home and there's not a chance she's going to spend money on better shoes, drink more water, keep a switched on mobile with her/ wear a fall alarm pendant. But she's quick enough to criticise anyone who she feels has used the NHS inappropriately. And happy enough for me to waste annual leave taking her there.

@countrygirl99 It's very frustrating.

My sister organised some carers leave from work to go down and see my parents (it's a long drive for her). It was largely so DM could get a break when my sister was there.

My sister did it a couple of times then the next visit my DM had swapped my Dad's days at the daycare centre, which she got council funding for, and so DF wasn't actually there. And just hadn't mentioned this to my sister. My sister gave up with it after that.

I ended up feeling like there was so many examples where she just totally took the piss out of everyone's time and efforts.

@HoraceGoesBonkers and @countrygirl99 these are such valid points. The resistance to things that would make life easier and more enjoyable is real and crazy.
I’ve been touring nursing homes and they are all like holiday camps with lovely menus, activity planners, hairdressers.
I’m years away but I do hope I can sell my house and live in a holiday camp instead of making my children unpaid slaves and moaning about my life.

A lot of this is so crazy. The lone working policy at work includes that you must keep a radio or a switched on/in range mobile phone on you at all times so you can summon help if you have an accident or emergency. It's something I do automatically and I've even made a little bag for it in case I haven't got a pocket.

Yet elderly relative refuses to keep pendant on or carry a mobile when going out into garden or upstairs (no phone line upstairs) despite living alone.

I do wonder if it's so long since mine worked and they'd have never had to do health and safety risk assessment at work when they were there.

It's as if refusing to admit that you are old somehow makes you younger, as if by not getting a heating aid/loo seat thingy/practical shoes you are magically holding back the tide. And that if you make practical changes to accommodate your needs you are somehow ageing quicker.
head in sand syndrome

@StiffyByngsDogBartholomew nailed it.

But now that I am cleaning up the consequences of my parents' head in sand syndrome, I can also see how much the one who was more capable (and is currently hospitalised) was actually masking how much they were struggling day to day. And it's frustrating, because he must have known, at some level, that this was completely unsustainable. He must have been very scared. But he just buried his head deeper and deeper rather than acknowledge they needed help. It's so sad but also so infuriating because it didn't have to come to this.

Welcome to the thread @rosemarypetticoat. I really feel for you and know first hand how difficult it is. I expected you’re having to use precious annual leave or take unpaid leave to deal with the crisis. Are social services involved with your parents. You need to set some clear boundaries if they are otherwise they’ll leave you to get on with it. Harsh as it sounds the only way I forced social services to do anything with my late Mum was to not be available even to the extent of not answering phone calls. It’s not how I wanted to be but I know I’d have been sucked into the vortex otherwise.

Its a mystery to me , how professionals are fooled by the act. Maybe they aren't. My parents hid the aids they were given in the loft.

All these ridiculous rules around who will speak to you and who won't. People can see plainly in front of them whats going on. They collude with the older person because they ( can be) incredibly strong and forceful personalities hidden in frail bodies. Neighbours, nurses, visitors, my parents had them all hanging from a piece of string.

We are cast as interfering villains.

We had an episode recently where a GP was in visiting the care home recently, my Dad had a cold and although the doc wasn't in to see my Dad the staff nurse got him to pop in to see him and prescribed him some antibiotics.

The staff nurse told my DM and you would think that would have been enough but my DM hadn't spoken to the GP personally about it so went and sat in the surgery to try and waylay him, he mysteriously went straight home after his housecalls that afternoon.

I think some of the professionals around my DP know they're really hard work but we sometimes don't get the full story, or my DM will demonise anyone who doesn't go along with her. She was on the warpath with the optician who didn't want to refer my Dad for cataract surgery. As far as I can make out this was on the grounds that Dad's tremendously frail and a general anaesthetic would be risky, plus the whole thing about him not being able to move or speak and being incontinent and basically not having long on this earth.

In the end he did the referral but he wrote something along the lines of the patient NOK insisting which she was annoyed about.

It's just the constant stupid drama!

@AgitatedGoose No social services yet, and I very much feel I could be sucked into the vortex if I don't put some boundaries in place very soon. I have a sister who has complex mental health issues and has witnessed their slide into neglect without intervening and who cannot provide reliable care, so I have stepped in during this emergency phase but this is not sustainable. I can tell I am going to have to very quickly grow much harder hearted or my family and my health will suffer. I don't think anything prepares you for this life stage.

@rosemarypetticoat
This is such an important issue.
Women in their sixties are taking on so much, what with ageing parents, looking after grandchildren, and some of them are still working while doing so.

We need to take a step back, because our own health is impacted severely with all of this.

It's impossible to keep juggling so many balls, unless you drop some of them.

I found with social services you have to make a fuss. My DM wouldn't speak to them she just flatly refused to answer the phone, this was not helpful as it meant I had to deal with them while trying to run a business and I was at breaking point with it all. I've been told my chronic illness has progressed now its affected my walking and the Dr's have told me the unbelievable stress I was put under last year with DF (plus a few other things) has directly affected the progression. I now have to live with physical effects of dealing with elderly parents for the rest of my life.

Speaking as a community therapist... sometimes we're fooled, often we're not. I do believe that helping patients and their families navigate this stuff is what we get paid for. The technical side of the job is more straightforward. The emotional side keeps us awake too. The brutal truth is there are a lot of people living on the edge, or well over the edge, of being able to cope. I do do a lot of saying 'I know this lady has two daughters but they're not available so what other options are there' in team meetings. One of the benefits of being an old battleaxe in a young team. Having said that, often there is no alternative to just letting someone be unsafe. It is not a crime to want to be at home. It's why I am with everyone else on this board in saying, be honest, and only volunteer for what you can genuinely offer for the long term, because you WILL get stuck.

@PermanentTemporary my DF became violent with his dementia and verbally abusive. Social services said as he was dangerous we should not leave DM alone with him, we thought they meant temporarily while he was found a place. We quickly realised they meant that to be a permanent thing! I told them it was not feasible we have homes, families and jobs and we were also being verbally abused and physically threatened ourselves. My DF trying to burn me with a lighter was the final straw really. He's in a home now after being sectioned twice, but even now on a "good" day he will actually speak but only to admonish us or demand a phone so he can phone us (and abuse us some more) he doesn't have the capacity to actually use a phone anymore but doesn't understand that and god help us if we try and tell him he can't have one. On other days he cant speak at all just nods.

Hi. Just to let you know mum passed away yesterday. We were there and it was oh so peaceful just what I’d hoped for. Rest in peace mum ❤️

Condolences @Metoo15. Glad she’s at peace. I hope you’re doing ok.

Gosh, that means she lasted a week without water.

Hi yes all she had were mouth swabs. It’s unbelievable that at 92 and 6 stone with a weak heart. Her willpower was amazing. Brave and hardworking with the heart of a lion ❤️

I'm so sorry @Metoo15
You always did your best for her.

Condolences @Metoo15

@Tara336 I know the feeling, I was physically and mentally a wreck when I stepped back. Physically I'm in better shape now but I still have trouble processing how selfish they were.

I also have my own business and my kids were 3 and 9 at the height of it all and no childcare because of the pandemic. "D"M tried to coerce me into providing personal care for my Dad - he had carers in 4 times a day and I was visiting as often as I could but it wasn't enough for her.

She would slag me off behind my back for not doing enough. She once phoned me up and told me I would have to look after my Dad. I was really shaken and called back the next day saying there was no way I could do this and she pretended it hadn't happened.

A lot of it was just a bit more snidey. She phoned me up telling the carers had asked if we could cover a shift on Christmas Day "But you won't be able to do that". Towards the end of Dad's time at home she very pointedly told me that she'd had to tell social work I couldn't look after him.

I was also told I could get "insurance" to let me take time off work.

Meanwhile I was spending a huge amount in petrol, food bills, and the odd hotel stay and running myself into the ground.

She didn't give a shit when I ended up with depression and was angry when the visits were heavily curtailed.

She didn't want to move because all her friends were in her remote town and the only time during this period she came to us was when Dad was in hospital, she managed to stay for 10 minutes for a walk then had to dash off.

Our relationship has never recovered and I feel really sad about it. I haven't spoken to her for a couple of weeks since she posted stuff through the door of our house.

Anytime I do speak to her now it just turns into the same pattern of her shoving and shoving at boundaries, trying to get me to go down more, if I do go down she wants me to stay longer, tries to make visits more complicated.

The last couple of years she's had a big birthday party for either her of my Dad in the summer. They're really, really high maintenance and difficult to cope with - the last one was at Dad's care home. I'm actually at the point I don't think I can do another one, my mental health was in the bin for weeks in the run up to the last one. I know it sounds really stupid because it's just a party. But it just puts me back into that place mentally where there are attempts to manipulate me into doing stuff I don't want to do, or refusing and being gas lit and guilted.

I agreed to go last year as it was meant to be a relatively low key thing then it all escalated. It turned into her demanding people make speeches to Dad who doesn't have a clue what's going on (I said no), stay for a weekend etc etc.

@HoraceGoesBonkers that all sounds like an absolute nightmare.

Condolences. My mother fought it too. Very difficult. A momemnt of lucidity near the end.

My parents lied consistently. They had a cleaner and a private carer. I was appalled to find there is no need for a private to have any checks. She kept no records and when I mentioned this to the CQC, they said she could do as she wished. Its an utter minefield and you dont; comprehend until its too late.

Looking back there was an awful lot of gaslighting. I once got a call at 2am from my brother in law saying my Dad was really ill and go to to hospital. I went straight in a taxi but before I'd managed to get my clothes on I got another call from a nurse at the hospital asking me to go in.

I did wonder why DM hadn't called me directly but put it to one side as my Dad was so ill. I got shouted over by DM when I tried to tell the consultant that Dad had a poor quality of life (he had a great quality of life, apparently).

I stayed there for hours. I eventually had to go back so DH could go to work and I could look after the kids.

DM at first told me to get a taxi back to not bother DH. I said actually it was £25 and he could get me (I just wanted to see DH), so she grudgingly offered to pay but not for the taxi I'd gotten out. I'd been buying her stuff from the vending machine all night too.

When DH was nearly there my DM started making a big fuss about not having a mobile phone charger. Mine didn't work with her phone so she wanted to use my phone to call her car insurance. We'd been there for hours and it felt like she'd waited until it was time for me to go. I'd been asking her for ages to have a grab bag if Dad needed to go into hospital but "you can't plan for old age".

Later on, when I stood up to her over some of her behaviour, she shouted at me that it was terrible I hadn't picked up my phone when she tried to call. She claimed that she'd called my landline even though we'd unplugged it years before and I never, ever used it. I think she unfortunately really liked the drama of phoning around another people to phone me.

I offered to drive her from her hotel to the hospital the next day on the basis that I needed to stop and do an errand on the way - it was at the height of the fuel price inflation. She would only take the lift if I didn't do the errand. So no lift (by that point I really started putting my foot down about it all).

It's bad because she seems to actively use situations where people are really stressed and also naturally sympathetic towards her to spring some of her worst behaviour. If you try to say anything she'll claim she was "in shock". It's a total pattern of behaviour. Start trying to put down boundaries and you're being "uncaring".

Sorry, I know I'm rambling a bit. There wasn't one big thing, it was lots of little things that gradually ended up with a situation that's really difficult to cope with.

My Dsis died young because she had terrible mental health problems; in fact in a way I think she got the brunt of DM's behaviour which then became more focused on me after she died. Sometimes I worry what happened to my sister will happen to me.

@Metoo15 so sorry, condolences 💐

@HoraceGoesBonkers that sounds incredibly hard.

@HoraceGoesBonkers my goodness you had a tough time, for a long time. I hope it’s some release to share it here and sorry for the loss of your DSis along the way 💐

I know from experience that DHs and DCs start to lose patience too - so you’re truly between a rock and a hard place. No one wins, least of all you. Brené Brown has been on my play list for my long journeys, which is a kind of therapy - she talks about the importance of boundaries - and that no one else likes it when you lay them down and stick to them.