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

@Nodancingshoes I'm so sorry you're having to go through this too. I hope your relative finds peace soon.
I couldn't agree with you more, our system is shockingly inhumane.

Not sure where we are heading but I fervently hope it's towards the inevitable.

dad asked me to come with them on Tuesday to see the consultant at the hospital - mum has been having tests for months as there is clearly something wrong but nobody so far has identified what. There was potentially something bowel related but doctor thought it was haemorrhoids. She has been bleeding rectally for a while and having issues with diarrhoea/constipation and sleeping most of the time. she's also had a niggling cough for months they had a call on Friday from a consultant asking them to come in urgently on Tuesday and would not discuss what it was over the phone. Dad is very worried it's going to be cancer but the consultant is a practitioner in gastric medicine rather than oncology so not sure whether that rules it out.

anyway clearly something is wrong, I'm just hoping that 1. There is because otherwise we will just continue with this awful death by a thousand cuts 2. At least bowel cancer will be quick 3. Dads greatest fear, which is dying before her and her having to go into a home, doesn't come true and that he will have a bit of time to recover from 24/7 care to potter about without any cares

@StiffyByngsDogBartholomew How awful to keep you guessing like that.
Surely talking over the phone has to be better that waiting days to see them in person!

I totally understand your thoughts, but I am just astounded at the way the medics handle things. My heart goes out to all of you in the horrible situation.

@AurumTroyoz
oh it's better than that... the consultant said she couldn't discuss it with dad as she needed to speak to mum and dad had to point out that as mum couldn't speak that would be rather tricky. At which point said consultant said she didn't realise that so clearly hadn't read her medical records.
i often wonder if I expect too much from professionals but as I'm expected to know the ins and outs of everything I'm dealing with at work for much less pay than a consultant I don't think I'm unreasonable expecting shr might have read the notes and something as important as whether the patient can bloody speak

@StiffyByngsDogBartholomew I've no words! That appalling!!

That's shocking. No-one seems to give one jot about the mental suffering the patient and family are going through! 🤬

But we had same with FIL. He saw a spinal specialist consultant who very rudely said they had reached the end of the treatment road for him and there was nothing else they could do for him with regard to arthritic pain in his spine (fair enough, but dont be so bloody rude!)...my DH attended the consultation and queried 'but what about the cyst/growth/lump at the base of his spine; what's happening about that?' The consultant replied 'what cysts/lump?' And only then opened the file to take a cursory look through FILs notes.

So horrible and belittling for FIL.

But DH, on leaving, told the consultant what a pompous, jumped up little twat he was. The shock on his face was very satisfying if nothing else.

Having had to point out to a nurse (on an elder care ward no less) that what might seem a simple message to her can cause total confusion in an elderly lady with alzheimer's, whose coping mechanisms have been ripped apart by her husband going into hospital and who is terrified he will never come home, nothing surprises me anymore.

I think too many medical staff treat patients as a set of symptoms to be dealt with and forget they are dealing with a human being. Whether that is because they are burnt out themselves, incompetent or because they are a pompous twat the end result is the same if you are the patient.

I’ve seen the same on a small scale in a hospital ward where drinks and food are plonked in front of a patient, not in reach and with no checking that they are able to a) recognise that it is food or drink (because it looks unfamiliar or is in a different container to their usual) b) reach and c) feed themselves without assistance. The ward staff can tick their boxes to say everyone has been fed, but patients are still hungry and thirsty. And it’s no one’s “fault”, lines of accountability etc.

@moggerhanger Sorry for your loss and I hope the sadmin goes as smoothly as possible.

Hello there. I have spent a few years in the bad daughter's room at the Cockroach Cafe but I fear I will be spending more time here now. DM is in a nursing home. She has deteriorated step by step over the past three years an it seems that this week has seen a further deterioration. For the past year she has been unable to move her arms (has had no mobility for years because of osteoarthritis) and can do nothing for herself at all. Since last week she has been sleeping more and more. The pattern is that she is brighter in the morning and she is dressed and taken to the dining room for breakfast but is back in bed by lunch time then sleeps for most of the day. Her breathing is laboured but her stats are all fine. When I visited her yesterday she asked for my DF by name rather than a generic "Dad", asking when he was coming. He died 12 years ago.

So far as we know the end is not imminent but this seems to be the beginning of the end.

So the past 24 hours have been horrible. Nan is still in hospital, hoping she will be moved to a care home for EOL very soon as we have been told she needs 24 hour care. We are still doing 3-4 visits a day around work and children. She has taken to ringing me on the mobile crying at all hours. When we ring the ward, they say a nurse has been in to her and she's fine. I put the mobile away earlier but she's obviously asked someone for it back. The guilt is eating me up and I am finding it hard to not resent all this. I love her but I feel exhausted.

It sounds cruel @Nodancingshoes but you can't carry on like this, if the nursing staff won't remove the phone (which I know they won't ) then you'll have to turn your phone on silent while you are getting some rest. You know she's safe and looked after xx

@Nodancingshoes that sounds impossible - 3 or 4 visits a day?? How on earth are you managing that? Would you consider cutting down? And yes carve out some time with your phone on silent.

@Nodancingshoes can you put your phone on do not disturb/ nighttime mode so that only specific numbers can call you. Then you could allow calls from other family/ the hospital but not your nan at specific times

The visits are split between myself and my sister - I couldn't do them all myself, I'd go mad... I'm struggling with my feelings, the last place I want to be is in that hospital 😞 I think I will take her phone home with me. It's a bog standard phone, not a smartphone or anything. She had it in case of emergency at home but it's not needed when she has 24hour care around her. I'm up at stupid o clock again this morning - I just can't settle.

Could you cut down to a visit a day, alternating so you get a day off each every other day? You sound more stressed than your nan... please get some rest. Maybe a few days off work too?

Good idea re taking the phone home with you. I'd definitely be doing that. And one visit a day between you and your sister or you'll have a breakdown. You can't carry on like this. 💐

@Nodancingshoes that's not sustainable. I'm visiting my mum every other day and that is bad enough.

I'm here now and frankly I feel like I want to run away and hide from all this. I know I can't tho 😞

Yes you can, for a couple of days.

I'm sorry you're also in this very difficult situation, @IthinkIsawahairbrushbackthere

I still have a while to go I think. I don't know how long she can carry on like this - weeks? months? (I hope not) The visit tomorrow with my uncle should be positive - I want him to talk about their childhood. If she is listening or hearing us they are things that may be meaningful to her. I know all the stories and he is a really good storyteller. I also feel tomorrow I have to balance his needs as well - he is in his 80's. They have always been very close and he is upset to be losing her, their younger sisters having died a long time ago.

Well the "urgent" appointment that might have been bowel cancer is 90% likely to be piles.

so back to square one, with 4 years after being given max 1 year apparently my mother is indestructible

I bet you wanted to flatten that bloody Dr!!!

Very very much

Especially as dad had said on our way that if it was cancer they would not be consenting to any treatment other than keeping her comfortable. Poor dad didn't know whether to be glad or disappointed