[eilca]

Elemental has raised what I immediateloy thought about in pallative care. Your Mum has a chronic illness and may need assistance in managing this.

I am sorry that today has been awful. Perhaps use the hospital admission to find out about pallative to improve your Mum's quality of life.

[ubermum]

Great advice from Elemental.

[HillmanMinx]

I had a lot of pent up anger and emotion from the day, so sorry for my snarky comment mod Im not usually so rude and feel embarrassed.

This is going to be a brain dump. And not the first one of the night. And not a total picture of things either.

gerontolgist

yes I've wanted her to see one nearby for some years. Firstly because they have a special interest in the case management of old people with complex care needs. Secondly because her p*ss poor excuse for a doctor should be struck off.

I will contact the gerontologist early next week and hope his books are currently open.

Palliative Care specialist

Hey no lead balloon reaction from me.
My dad and mum and I are at sea without an anchor with my mums care.

If she goes back to how she was 2 weeks ago, we will be back to tetering on the edge of coping, and not coping.
We have been there more or less for many years. And mum was still showering herself and making some meals when at her best.
It wasn't ideal, but we got used to it and could handle periods of worsening, and a health crisis 2 - 3 times a year ( that was predominantly resolved in hospital, and from which she had slow but steady recovery at home).

But if she doesn't get back to that tetering-on-the-edge position - we are lost, in over our heads, screwed.

Today was the worst day of my and my families lives. And we've had some pretty ****ed up days before. But this was just beyond devastating.

I've seen my mum at deaths door literally dozens of times. Heart rate bouncing from 40 to 205... not a word of a lie. Heart sitting in the 40s where they were trying everything to bring it up.
Heart sitting at 190+ where they've tried desperately to bring it down.
10 KILOS of fluid being drained from her body in a day.
I've called multiple ambulances over 15 years.
Digoxin poisoning.
Warfarin poisoning.
Amiodorone overdose. etc etc
After heart surgery from which she should have been home after 10 days max, with only a couple of those days spent in intensive care till the life support was removed. But no, she was critical for 6 weeks in intensive care, and never bounced back really.
I've seen her go from a size 16 to a size 8 (more like a 6).
And more.

And you know what has been the worst? The reason today was the worst is because she sobbed and sobbed and said she couldn't go on (as I said in my OP). And why? No sleep. She has NOT slept for 5 minutes in days. THAT is it. SO STUPID! But so utterly destructive to her and our family.

Her heartrate is sitting between late 70s and late 90s. Her blood pressure is high but stable. No masses of fluid to dramatically take off her. No specific 'thing' that they can work on. Just, very poorly, and exhausted to the point of torture.

And you would not BELIEVE what we have been through, to get her a ****ing sleeping tablet. Its a ****ing JOKE, except for the fact that my mother is suffering immeasurably. Just ridiculous. I honestly am sitting here shaking my head at the ****ing ridiculousness of it.

Hopefully she has had a sleeping tablet now. I told her if they don't get her one, ask for a phone and call me.

There is no medical reason they haven't given her one as yet. Just the rigmarole of trying to get to the 'bottom' of her situation, without the aid of her GHOST of a GP.

A situation which is the SAME as it was when they discharged her on monday, only worsened because they discharged her with every medicine known to man EXCEPT a sleeping tablet, and her doctor and her backup doctor refused to make time for her or even DO THEIR JOB and take handover from the Silver Chain nurse who came to the house to assess her.

Anyway, I know I am rambling and there are big gaps in what I am saying which is necessary to get wtf I am really talking about.

But no, im not upset by the idea of palliative care. A little human decency from the medical world is long overdue, despite my gratitude to certain doctors and nurses over the years. I dealt with a handful of the ones nobody is grateful for, today.

I'd like to APOLOGISE to my mums Dr. For calling her for the first time, after 10 years of (MISGUIDED) loyalty on my mums part, and asking for her to go out of her way for mum due to a crisis. She declined to see my mum, of course, or speak to mum, or me, or refer her on, or touch my mum with a 50 foot pole. Sorry? Sorry? WT actual F are you doing in medicine?

Id ALSO like to APOLOGISE to the backup doctor, who CAUSED this crisis by waving his 5 minute wand over mum and removing ramapril from her meds because he decided her blood pressure was too low and she might potentially get dizzy. Well LA DI DA. DIZZY? I'd take dizzy. She went to you for a ****ing script repeat and she HAS a cardiologist, she didn't need your input. And you don't ****ing care, and will never know the fallout of your smartass intervention. But sorry for asking for YOUR help.

I'd like to THANK the receptionists and nurses at the surgery, for being so caring and trying their best to help us, despite the doctors being far too busy getting as many 5 minute appointments in, to deal with mum. Your despair and compassion is the saving grace of that whole medical practice.

I'd like to deeply THANK the Silver Chain nurse who came out and did a thorough job, and simply needed the help of mums surgery to get her kidney function tested and get her a sleeping pill prescription. When he called to handover to mums doctor, and found mums doctor equally as unwilling to take a moment to deal with it and order the test. So then he had to ring his supervising doctor, who had no other choice, but to advise going BACK to the local ED and getting the kidney function done, and a sleeping tablet prescription, because mums doctor wouldn't deal with it.

I'd just like to APOLOGISE to the triage nurse at the hospital today. For putting her out. After 5 days of mums health going downhill, where we were all at our wits end, we took her in to hospital and then spent 5 days doing tag team to the bedside, then she was discharged sicker than when she went in, and we spent 48 hours straight tag teaming at home, hopeless and distressed about what to do next. Followed by mum finally breaking down and begging us to kill her. Followed by a hellish 7 hours from her breakdown, to getting to the ED, only to have you sit there amused and bemused at mums presentation and our particular point for being there. WE ARE HERE FOR A RENAL FUNCTION TEST TO MAKE SURE HER ONE PARTIALLY FUNCTIONING KIDNEY IS NOT IN FREEFALL AND BARRING THAT WE ARE HERE FOR A SLEEPING PILL BECAUSE SOMETHING HAS HAPPENED THAT HAS MADE IT IMPOSSIBLE FOR MUM TO SLEEP AND SHE IS IN A WORLD OF HELL. SIMPLE ENOUGH. Not to mention the referral was on your ****ING screen from the silver chain people. But No. 'Look at your mum for me. tell me what bothers you the most'... WT? ummm, her face is covered in blood blisters from warfarin, here eyes are yellow, her skin is yellow, beneath that she has a blueish tint... and then there is the ghost whiteness that is also apparent. The despair written on her face, the childlike quality to her desperation. they exhaution, the partially opened lips that help her pant for breath.

'But does she look different to normal?' YES you idiot...

the other triage nurse chimes in UM NO SHE DOESN'T look different to normal, she looked like that last wednesday.

WTF? She wasn't NORMAL last wednesday. She was deathly SICK! so sick we forced her to the stupid ER.

And thanks for looking like it was a bunch of hilarious bizarre maybe imaginary things mum has wrong with her. I know now why there is glass separating her from us. Because by this point I was ropable.

Oh I could go on. There were 2 more nurses to contend with with similarly terrible and laze fair attitudes. Sorry her heart wasn't as dramatically playing up, OH their interest goes up if imminent death is dramatic and exciting looking. But drawn out death from the ugly truth of mums illness - why was she wasting their precious time?

When we left, her kidney function was low but acceptable, her chest xray showed a worsening of the white part that indicates fluid or infection (despite having the fluid drained a couple of days ago, and being on strong anti biotics), her heart attack marker in her blood is slightly elevated from the other day. Her body is breaking down, ever so cruelly slowly. Whether or not sleep deprevation is a cause or an effect - let her sleep! Its the one factor that can change things right now.

Mother ****er Im going to get a medical degree just so I can circumvent the pathetic 'process'.

Before anyone says 'well your mum should have gone to the hospital in the first place'... understand this... she was DISCHARGED in this exact state on monday. I will put my money on her being discharged in the same state again.

My brother and SIL and nephew and nieces are on their way down from their various faraway places. They made that decision all by themselves... which is extremely lucky for them, because had they called again tonight demanding to know IF they Should come down, they would have copped my fury at the fact that their ONLY decision was whether or not to take an extra day off work and spend their easter holidays visiting here rather than relaxing... if only OUR choices were so simple.

OK time to get a few hours and start again in the morning.

[meljb]

OP I have no advice to add. I hope your poor mum (and you) got some sleep last night.
I hope you get a gerontologist and/or palliative care assistance asap. When mum had end stage cancer the palliative care team were awesome - they wanted to stop her suffering and make what was left of her life dignified and pain free.

[podg]

I guess the hospital know her pretty well by now.

The question for the team is whether she is now at 'end-stage'. It sounds as though rehab is not an option and she is suffering - so ask them in so many words, and maybe request a visit from palliative care during this admission. Sometimes it's really hard for the team to make that move in thinking. They might still be in the mindset that she is teetering but OK when good, and all they have to do is get the right treatment for the current problem - antibiotics, antiarrhythmics, whatever - and she'll be back to the state in which she and her family cope well at home. And they could still be right, on this occasion.

I'm sorry your mum is stuck in all this, and you as well. I hope she gets some sleep soon.

Are you well? Your needs are important too and you want to be on as even a keel as you can manage for the weeks ahead.

[CharliMarley]

You could have been talking about my mother - 30 years ago. She had everything that your mum is going through now, including the confusion when in hospital. It is a worrying time OP and I feel your pain. The public hospital system seems to NOT do anything much and it is hard to talk to anyone who knows what is going on. I would keep on trying to find some answers and she would probably be seeing a geriantologist if she is in the public system. I don't know the answers either.

[HillmanMinx]

Are you well? Your needs are important too and you want to be on as even a keel as you can manage for the weeks ahead.

Not really. My mums breakdown yesterday gave me an adrenalin surge which I guess made me a bit extreme. To make matters worse my doctor had me change my anti depressants yesterday (starting with halving the one I take in the morning) so that was just dandy timing. I have to get this internalised anger thing under control stat.

My friend is a nurse interstate and last night talked me through having the palliative care discussion today, depending on what is going on.

Gotta run x

[HillmanMinx]

OK just thought I'd update, mum is heaps better today. she got a few hours sleep (medicine induced) and dad said she is chatty and alert. They have removed many of her meds, so I don't know whats going on there, but for now, she is feeling much better.

I've 'calmed my farm', so to speak tho I feel spent and like ive been locked in a physical battle for 24 hours. bleurgh.

OK thanks for being a place to offload, and for the caring comments They help

[~*Twilight~Zone*...]

Hillman you are in WA aren't you?

My mum had a terrible time in Fremantly Hospital recently so I can understand your frustation at the system. The whole thing stinks. Who's to blame I don't know but I would love to put a rocket up their a*se.

Hope your mum is feeling more comfortable now.

[paddyboo]

how much predinisone was she taking? I take 5mg daily, have done for a very long time) and 20mg hydrocortisone daily as well and would definitely not say I get the jitters/erratic behaviour. If anything, suddenly stopping it would make me collapse in a heap...definitely talk to the dr.