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

Thats horribly wrong, the taping. What a job.
They wouldn't let my Mum shut down. Kept asking me to provide new nighties. So sad.

@YouMustBeHappyNow we’ve just been asked about a ReSPECT form for DF. We hadn’t seen before now, apparently they’re not used in all areas. It always seems like you have to have a fresh DNR conversation with every change of place.

ReSPECT seems a good approach to a sensitive topic - but not sure if the form will be linked to the person rather than yet another place (we’re still trying to find the right arrangements to meet complex needs for a confused person in denial about how much getting better is possible).

Last DNR discussion was with family due to lack of capacity but DF at some point saw what the DNR form said (basically keep him comfortable but nothing invasive that would risk reducing his quality of life even further). DF was very upset by the form 😔

Latest medical professionals have recognised both necessity for the discussion due to DFs physical deterioration and very obviously that DF lacks capacity to understand the point of DNR so they’re asking NOK again. I’ll be a bad daughter again for what we believe is the humane answer.

I've had a call from mum's care home. She's "very sleepy", not taking food or fluids, and has a load of fluid on her lungs. The home's GP has proposed (to my relief) that all medication will now be withdrawn, apart from the "keep comfortable" stuff. So maybe this is finally It (though we've been here before - admittedly without the meds withdrawal). I'm a 4 hour drive away so will head over later. I have my daughter's birthday gathering to manage first (talk about timing...)

@SinisterBumFacedCat how are things with you?

And @AurumTroyoz and @AllEars112232 and @HoraceGoesBonkers ? Indeed, everyone on this thread.

@moggerhanger MiL died yesterday. She'd been without food and water (except to wet her mouth) for 7 days.
Last week was brutal. My fabulous DH spent hours with his mum, sitting by her bed, chatting about anything that came into his head.
I've learnt things about what happens to a body as it dies that I wish I didn't know.
It's wickedly cruel making a person endure such an undignified end. The law needs changing.

I'm so glad she's now free and at peace.

@AurumTroyoz I'm so sorry for your loss, and your husband's loss, too.

@AurumTroyoz Sending condolences to you and your husband but feel relieved for you both that your MIL is finally at peace. I can only imagine what the last week must have been like and agree things need to change. No one should have to endure this kind of death.

So sorry @AurumTroyoz . You're in my thoughts - and you're absolutely right, it shouldn't happen like that at all.

AurumTroyoz So sorry for your loss. May you all have peace ❤️

@AurumTroyoz you are right. So sorry you all went through that

Is anyone else on here still just trucking along from the first thread ? Sympathies to all who have recently lost parents but every time it makes me wonder how much longer our own "journey" is going to go on. It's nearly 4 years now and DM really shows no sign of medical decline. I've recently been signed off for a month due to stress but gone back to work. She went into respite for two weeks which was wonderful in one way but in another showed me just how much of my own life I'm sacrificing. Every day but one in ten I am either at work and theirs, at just theirs or just at work. I get 3 days a month just to do home and family stuff without parent or work getting in the way.

im so sick of it. She's recently been having tests on kidneys and heart as they thought something was wrong but nope. All fine. Apart from being unable to move, speak or think clearly she's absolutely "fine" apart from being kept alive solely by the million tablets she takes every day.

please tell me it's not just me and @MereDintofPandiculation that still haven't graduated...

I was on the first thread, possibly under a different name but possibly under this one. My DM has nearly died many times and then miraculously recovers, but we're back in a period of hospitalisation, also heart and kidneys under investigation. Unsure as to whether she will come out or go the other way. I'm also exhausted. My business is a mess, and I had cancer, which I feel convinced the stress of all this contributed to in relation to a weakened immune system, although I can never prove it. I'm supposed to be starting a new job soon, fuck knows how I'm going manage that alongside meeting my mum's demands. One of the factors that contributes to burnout is unreciprocated giving. I do know the one hand my mum appreciates what I do for her, but on the other the day-to-day constant stream of needs is exhausting.

We're going on holiday on Tuesday, but I can't look forward to it and I'm not entirely convinced it's going to happen, and I am anxious about what might happen whilst we're away, I'm sure we'll enjoy it once we're there but I'm also going to be having to manage mum's stuff from the beach, which isn't ideal.

What a shit show @SierraSapphire. I had to give up my growing business which still pisses me off 4 years later as I don't have the time or mental energy for it (cakes). I loved doing it and it's another thing that has died for the sake of keeping mum alive for as long as possible.
like many others on here dad moans about other people (mainly immigrants) taking up all the GPs time, I pointed out last time that people like me can't get appointments due to all the elderly people like them that seem to live in the GP.
he wants her to die yet moans that the kidney consultant, who can do nothing for her, isn't seeing her quickly enough. I. Not sure what he thinks intervention would do other than drag it out even longer

where are you going on holiday ? We just went away, it took me 5 days to relax

I am thinking of you all. Mum passed in April, refusing food, large weight loss and bed bound. She begged to pass. Last year she had a number of falls and wasnt in a good way. The Junior Doctors were on strike and I saw a grumpy consultant who was very off with me. I said I don’t want to prolong anything but I do wonder if it sounded like I was trying to do her in!!

In the end I spoke to GP surgery and a lovely women (think a liaison between care home and GP) got what I was saying and put some end of life medication in place in advance of the end. I know Mum was comfortable because when I saw her the day before she died she told me she wasn’t in pain. She knew her time was very close but she was ready. When I saw her the next day after she had passed (the care home called me). It’s funny. She was there in body but her spirit and soul had been taken away. I mean that in a good way btw.

We're off to Spain @StiffyByngsDogBartholomew - wanted to go somewhere else really as we've been to Spain loads, but money is now an issue and tbh we won't do much anyway so it probably doesn't matter much where we are! Sorry you lost your business as well. It's the conflicting emotions that are so difficult, not just the practical stuff. Of course I want to do my best for my DM and I will be devastated when she dies, but I just can't do everything and it's been going on for five years. I do think some of the medical staff think I'm blase about it all, though some of them definitely get it, but we've been through this over and over again and I just can't keep up that same level of alarm. I used to rush straight out of the door when there was an emergency and she was waiting for an ambulance, now maybe 25 ambulance calls in five years, I make sure I have a flask of tea (or at least the components of a flask of tea!) to take to her house as I know it's going to be a long process.

please tell me it's not just me and @MereDintofPandiculation that still haven't graduated...

DM has young onset dementia so I will be dipping in and out of these threads for years, wouldn’t be surprised if she outlives me. Despite the extreme behaviour, weight loss, frozen hands, smearing, kidney stones, diverticulitis, screaming, no memory and constant anxiety her MH nurse likes to tell me she is young and healthy and will live for years but have a faster decline (so probably spend longer in stage 7, all self funded). Thanks.

The one thing I am determined is that I will be taking a bit of a step back in September. Dd has done appallingly in her end of year exams, not helped by our chaotic life and me constantly having to prioritise needy parents. She starts her GCSEs next year and she is going to have to take priority at the beginning of her career than two people in their 80s at the end of their lives. It sounds callous but she needs my input more than they do.

dad would be quite happy if I moved out and went abd lived with them because he has become so self absorbed and selfish with the mum situation he cannot that my family needs me as well.

@StiffyByngsDogBartholomew I’m still here with mum ticking over getting weaker but otherwise no change in routine. Sending thoughts in solidarity.

While I found you all more recently and sometimes feel an imposter (when DF seems better). I’ve definitely been at the waiting for the other shoe to drop and unable to maintain the state of alarm point at times during the last 4 years. I have also realised how many years I’ve been helping at the edges in the slow creep of DF’s decline.

Thank you all for sharing your journeys and you are heard. It is exhausting, costs us so very much and is so prolonged.

Enjoy your holiday @SierraSapphire and what will be, will be.

@StiffyByngsDogBartholomew I too worry what it has all cost my DC, I have one doing GCSEs and one doing A-levels next year and do feel I let the older one down during GCSEs so that cannot happen again.

I've had nearly 4 years of seeing them 8 or 9 days out of 10 and quite honestly I am absolutely sick of the sight of them and their house. No end in sight either, every time we think mum might be on the way out (possible bowel cancer turned out to be a couple of polyps, kidney failure turned oit to be nothing, heart failure seems totally stable) it turns out there is nothing wrong. I just can't bear it any more. I have about enough time to keep on top of washing, cleaning and making sure we are fed but because of dhs ongoing work situation that I have talked about before (which has been postponed yet again) he works constantly so I am left with everything household, school and admin related. I don't even get any downtime at work anymore to do anything. And imminently we are being moved onto 12 hour shifts 4 on 4 off so I will be out of the house for 14 hour days when I am at work but will still be expected to provide the same level of support for DPs as o do no - more in fact as DF noted "oh you will have more days off then". Yes to recover from being out of the house for nearly 60 hours in 4 days FUCK OFF

i never in my wildest dreams imagined I could feel this way

@StiffyByngsDogBartholomew it all sounds dreadful. I'm so sorry you're in this position.

Can't you take a step back? What would happen if, say, you were hospitalised yourself, and literally couldn't go to your parents' house?

They'd have to arrange other assistance, surely?

How can you set boundaries @StiffyByngsDogBartholomew ? What you're doing sounds over and above what's reasonable. I used to prioritise DM all the time then I got cancer (with no other risk factors) and realised I needed to do some things for myself. I can't be responsible for her (poor) decisions. If things go wrong, so be it. I know it's not that simple but I only stepped back when I had to. I was even in A&E with her one night straight after a chemo infusion. The bowel cancer thing reminded me that DM was convinced that the GP had told her that she had bowel cancer, and however much I told her that he hadn't, he was just referring her for tests she wouldn't believe it, so I was there with my real cancer supporting her with her imaginary cancer! We're just off to the hospital in a bit with the big list of things that she's asked for. I have just been out for a nice walk with a friend first though.

I wholeheartedly agree with ShellBeach. You can’t keep this up it’s insane. Get in touch with social services. If your parents won’t agree to it, tell them your hours are changing at work and you’ll only be able to visit once or twice a week at most.
They won’t understand your life, or the strain it’s putting your family under.

My mum always used to say the children always come first. I used to remind her of that when she told me I didn’t visit enough, do enough etc.