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

So latest is my mum will have a continuing health care assessment in November. Nurse doesn't think she'd qualify just yet, but expecting a deterioration presumably. Nurse also thinks mum will still be with us at Christmas, but obviously no guarantee. God bless her, I hope she isn't.

Nurse sorting a Just in Care pack with doc hopefully, which I'm hoping we'll have soon.

Poor Mum. My neighbour who is religious is praying for her to be comfortable and for the best outcome.

She is on palliative care but not at end of life. I hope she arrives there soon and she is at peace.

My DM is refusing to eat a lot now. Of course the carers are keeping her going with build up milk shakes. She’s always asleep or falling asleep during visits. Doesn’t know my name anymore, or who I am, just knows I’m familiar. I haven’t seen her out of bed in weeks. But apparently she’s been getting aggressive with the staff when they try to feed her. I don’t blame her, I wish I could just say, she’s had enough, her body is trying to end this, just keep her comfortable, but that would make me evil.

No it wouldn't @SinisterBumFacedCat, it would make you a normal compassionate daughter. But so much effort and pain is required takes to fight these policies which at bottom are all about a for-profit institution protecting itself from what it believes is legal risk, rather than a genuinely human response to an individual. You can have those fights; my sister and I have had them. What I hate is having to have them over and over again.

@SinisterBumFacedCat you must not call yourself evil. You are compassionate- that is the word you need to use. We are facing a generation who have been kept alive by medication for absolutely every ailment- nothing has been made better they have just been kept alive and when they deteriorate another organisation aside from the pharmaceutical companies benefit - the care system. It is a scandalous situation. Decades ago these elderly would have died dignified deaths at the point their bodies had had enough. I am so surprised at my passion for Dame Esther Rantzens campaign for a choice of choosing a dignified death but listening to stories on here and my own experience just makes me look realistically at where we are. I am aware before anyone flames me that the dignity in dying companies are also monetising the situation.

An elderly parent I know of (not mine) who has been causing a lot of stress and been ill for a long time has died. I know this sounds awful but it actually made me feel a bit more hopeful that my DF will pass too at some point (I mean obviously everyone dies, but he's been ill for the last four years and it was starting to feel like things were going to go on like this forever).

Its only now, 2 years on, I mull over the cheery chats with the nursing home. Informing me of yet another Covid jab or course of antibiotics. Terribly sad.

First time writing on the thread, although I've been an unpaid carer for years. My relative is on palliative care now, but we don't know for how long. I am finding this waiting such a challenge, and I'm not sure how to manage it.

You're in the same boat I am! It's awful, isn't it. My only hope is that an infection comes along sooner rather than later and ends things. Coping with the uncertainty is really difficult.

Yes, the unpredictability is so difficult. I've had to work part time to do the caring and try to balance everything with my young family. I don't think I ever got the balance right, tbh.

They are now in a nursing home which is much better as they're looked after, but I have the guilt of feeling I should be there with them, since they're dying. But it could be days, weeks...? I just don't know. Their quality of life is so low, it's heartbreaking.

How do you manage it? Do you have other support from other people caring? It's mostly me, in my case. My dh is great, but one of us needs to be with the children.

My mum has carers, who I'm increasingly becoming pissed off with as when I ask them to do things they do something else instead, so feel like I'm talking to a wall.

I'm going to deal with this next week. Joy! 🙄

Sorry it's been challenging with the carers. We also had carers coming in before the move to a nursing home. There's so much admin and organising when someone is being looked after in their own home, especially when there are numerous hospital admissions, appointments, etc.

We had a bad time with MIL’s live-in carers before she went into the care home- we found out the hard way that the first one was functionally illiterate, and then the second one was better but her arrival coincided with MIL starting to hallucinate, so there was a lot of to-ing and fro-ing before MIL went into the nursing home. The carer unfortunately complained about this to pretty much everyone except DH and BIL, so it wasn’t till we went to visit that we realised there was a problem. Good luck, @GoldenSpraint .

So, my mum now has moved into a stage where she tells the carers she doesn't want anything, then as soon as they've gone starts calling for me to do x or y or z.

I'm totally broken by caring for her, and since she's in her 90s and has carers now three times a day to do personal care, and anything else, I know I've got to stay strong and keep it this way.

Like another pp I feel like Evil Daughter for this, but I'm still relatively young, have given up the past ten years to caring for her, and my life has been on hold.

When she was very poorly and I thought she might die, I felt my life was going to start again and I was so happy about this.

And it's what I want, my life back. The carers are there, they do all the care now, and I must be strong and not get drawn into being her servant just because she prefers me to run around after her rather than the carers.

If anyone has experience of trying to do this, I'd love to hear how you managed it!

I have to do this now because mentally and physically I can't cope any more with caring for her. It's too much.

Thanks everyone xxxx

This weirdly resolved itself as they suddenly got into a better way of doing things!

@GoldenSpraint I've found with mine that she was brought up not to "bother" people about anything or "put them out", which means a complete inability to ask carers or anyone medical to do anything for her.

The bothering doesn't apply to daughters as that's what they're there for!

It got to the ridiculous point where she wanted me to take her to the toilet because she didn't want to bother the staff in the (private!!) hospital she was in. Despite them being trained to do that and the likelihood of me getting it wrong and causing further injury or pain!

You have to keep thinking longer term and that's what the carers are for and what they're trained/qualified to do.

My grandmother has been moved to end of life care. Don't know what to expect from here and the nursing home staff seem reluctant to give me an idea of time. Maybe they don't know? I'd feel much better, I think, if I had a rough idea of how long she might have left. It would be easier to plan how to be with her but also manage it around work and children. I am not managing the balance well at the moment.

It's impossible to say, @PatchworkOwl which makes it all the more difficult. The not knowing feels like it might drive everyone else crazy because we're all waiting for something that we have no idea when it will happen!

It's so stressful. Sending hugs and to you.

Hi @PatchworkOwl is your grandmother still able to drink?

@EmotionalBlackmail I'm not sure my mum is in the not bothering people camp. She dislikes having the carers here, and engages with them only as much as she feels she has to.

Then, once they're out of the way, 'normal' service can be resumed.

Other than keep telling her if she wants anything she must ask the carers, I'm going to have to ignore her, otherwise she'll not stop. And I'll never be able to get my own life back.

My idea to not do covid/flu jabs this year has been thwarted as the surgery are arranging a home visit to do them.

Women contemplating having their elderly parents to live with them need to read this thread. It's a prison they have no idea they're going to.

Yes, she can drink with support.

She is also now eating with support, only semi liquid things like yoghurt and soup.

She was mostly sleeping the last few days but has been more responsive today, they said, she has been smiling. Before, she was mostly looking around, otherwise not moving her face or body, or asleep.

Women contemplating having their elderly parents to live with them need to read this thread. It's a prison they have no idea they're going to

Yes. And the daughters end up by resenting the whole situation, not surprisingly.

Then she may not be terribly close to death yet.

It's when people lose the ability to drink and swallow that they die, on the whole.

People generally only last about four days once they've completely stopped drinking, although some seem to linger on for just over a week.

Wait till the male sibling gets the inheritance.

@Goldenspraint I forget, do you have POA? Whetger you do or not, you absolutely can ring the surgery and, frankly, ask what the bloody hell they think they're doing. I am very pro vaccination but I also accept that it's not an enjoyable process and that most people feel a bit rough when it's done. They would be putting an elderly lady through an unpleasant process to prolong a very poor quality of life and that is NOT OK.

Depends what they're thinking about. Certainly in the past, a surgery's vaccination target was met if the patient was offered a vaccination but declined. They don't have to actually get needle in arm to be paid.

Yes, the waiting is horrible. Extended family have been in to say good bye as it looked like she was very near the end, especially when she was non responsive and mostly asleep.

However, it seems that the drinking and eating again changes things.

I'd like to be with her near the end, if I can, but can't spend as much time as I have been with her this last fortnight. I also need to work and spend time with my dc and dh. It's so difficult to manage everything, and so sad.