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Any drs/nurses - Updated 30/4th/13 RIP mum xx


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#1 FeralMinx

Posted 04 April 2012 - 12:38 PM


EDIT

Just updating to say my mum passed away at home while we were with her, on Sunday 28th April. We are having a funeral on Thursday. Love her so much. Did a brief goodbye in the loss thread but thought this thread is the one that some people might be waiting for news about xx
















Firstly
- I've called mums doctor.  (eta for clarity - the secratary said the following, because the doctor wouldn't make herself available) She said call an ambulance, or bring mum to the surgery immediately.  Mum is refusing.  We will over ride mum if there is no other choice... but she is distraught, exhausted and tired of her illness.  And she was released in more or less her current condition, from hospital on monday.

Her doctors surgery is now trying to organise 'hospital in the home' for mum.

The situation is that mum has had 15 years of heart disease, triple heart bypass, atrial fibrilation, tachicardia, mitrial valve prolapse and COPD.  She now also has diabetes and anorexia and probably other things.  In short, she is chronically ill.  Its all flared in the last few weeks again.  

They removed some fluid and stabilised her blood pressure and heart rate over the weekend in hosp.  She was sent home Monday.

Since she has been home she has not had any rest or slept.  She is exhuasted but keyed up.  I have read that this can be a result of end stage heart failure, so fine.  But she needs something to get her the rest she needs.  And I am looking for options.  If you can point me towards any ideas to look in to, be it sedatives, morphine, whatever... let me know.  

BUT here is something I have a sneaking suspicion about.  When she was in hospital, they started her on prednisone spray for her lungs.  They also messed with her other meds, and started her on 3 other new ones, so that confuses matters.  But I just have this suspicion that prednisone could be making her hyped up.  When she stabilised in hospital, her mind was quite scattered.  she was talking more loudly than usual, and faster.  It was like she was on drugs (pardon the pun) but you know, high.  Or manic.  This settled down but probably only because she is exhausted.

She isn't sleeping, and today she cried and cried (I have never seen her cry) about how exhausted she is but cant rest.  It COULD be the heart failure, but COULD IT BE THE PREDNISONE?

Im asking because I have to advocate for my mother and do so very carefully and informatively because she doesn't advocate for herself, is sensitive to people doing so, and doctors miss a LOT of things with her because of her unwillingness to do so.

Edited by HillmanMinx, 30 April 2013 - 06:43 PM.


#2 DarkestNight

Posted 04 April 2012 - 12:48 PM

Hi, I'm sorry you and your Mother are going through such a tough time. I don't have much advice, but maybe ask a Pharmacist at your local chemist? Have the list of meds she's on, and the new ones that have been started and ask them if there's anything that could be causing this? There may be new drug interactions between what she was on previously and what she's on now.

IME Morphine has been the best thing to provide comfort for patients in the end stages (I'm an RN), but I'm not sure about how to go about getting it at home. Our hospital has a community service with many departments, but I think it's easier to have this initiated during the hospital stay. Mybe talk to a GP about hoew to get a referral?

Sorry I'm not much help, but I couldn't read and not reply.

#3 ~~~~!eternity!~~~~

Posted 04 April 2012 - 12:56 PM

I'm so sorry you are going through this today. I have no practical advice however wanted to let you know that when DS was on a steroid for croup his behaviour was out of control- he couldn't rest one bit. So yes, it could well be the drug doing this.

#4 Soontobegran

Posted 04 April 2012 - 06:30 PM

I am so sorry. What an awful thing to be going through. sad.gif
Is it possible she is hypoxic? That type of manic and scattered behaviour is often the result of low blood oxygen levels.
Is she still on the steroid spray? Prednisone can give people the 'jitters', particularly if they are not used to taking it but I don't think you can presume it is this that is causing her to be this way.
I say to call an ambulance and have her taken in for assessment.
Good luck OP

#5 mummaorange

Posted 04 April 2012 - 06:49 PM

yes def could be the prednisone!!!!!!!!! for sure 100%\

#6 rjflc69

Posted 04 April 2012 - 07:24 PM

While we encourage members to share experiences about their family's health, we cannot allow members to give medical advice for legal reasons.

If you are concerned about the health of you, your child or loved one seek professional medical help via your GP or a nurse on call service for your state.

Fiona
Moderator


#7 FeralMinx

Posted 04 April 2012 - 07:50 PM

rolleyes.gif
QUOTE
While we encourage members to share experiences about their family's health, we cannot allow members to give medical advice for legal reasons.
gawd I was asking for clues.  One day the government is going to screen conversations held on street corners lest they be sued.

mums back in hospital.  today has been a joke.  medical system sucks.  

over everything

#8 rosiebird

Posted 04 April 2012 - 07:53 PM

I think the moderator was referring to the post above - "definitely 100% the prednisone", not your original post.

I'm sorry she's having a difficult time in hospital.

#9 judy_

Posted 04 April 2012 - 08:59 PM

I would agree with the call to try a gerontolgist.  At this stage you need someone who can see your mum in the whole.  Not someone who will deal with each little medical issue separately.

I can remember when my grandmother was sick and dying, it was time to kick out the cardiologist and get in to a more holistic view.  Someone who could consider a best way forward, not a way to continue interventionist heroics on someone who was on their last journey in this world.

#10 Elemental

Posted 04 April 2012 - 09:09 PM

This often goes down like a lead balloon but I'm going to say it anyway...

I'm not sure what state you are in but I would be asking about a Palliative Care specialist. Ideally someone that is going to involve you and your family as well. I don't say this as a "your Mum is about to die" suggestion, but that she sounds very ill and most of the conditions you've listed are not going to get "better" unless there's a reversible component which I presume from the amount of procedures and hospitalisations she's had already you've already been through. Giving your Mum quality of life should be the absolute goal.

Pall care isn't about death and dying - it's not even about disease. It's about the person in the middle of it all and the families around them. And I think they could be helpful for all of you.

#11 eilca

Posted 04 April 2012 - 09:41 PM

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.

#12 ubermum

Posted 04 April 2012 - 09:56 PM

Great advice from Elemental.

#13 FeralMinx

Posted 05 April 2012 - 01:44 AM

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.

QUOTE
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.

QUOTE
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.

#14 meljb

Posted 05 April 2012 - 06:42 AM

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.

#15 podg

Posted 05 April 2012 - 07:04 AM

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.

#16 CharliMarley

Posted 05 April 2012 - 09:25 AM

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. unsure.gif

#17 FeralMinx

Posted 05 April 2012 - 10:03 AM

QUOTE
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

#18 FeralMinx

Posted 05 April 2012 - 02:47 PM

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 original.gif  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 original.gif  They help



#19 paddyboo

Posted 05 April 2012 - 03:20 PM

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.

#20 PreachersWife

Posted 05 April 2012 - 03:20 PM

I couldn't read and not reply. No way comparable but my DH's elderly nan (who passed away a few weeks ago) went through a similar time. We were all so happy(?) when the medical team started discussing palliative care. The nurses were so wonderful there.

Sounds like today was a little better, hopefully will continue.

#21 boatiebabe

Posted 05 April 2012 - 03:22 PM

HillmanMinx

I don't have anything to say help you really but I wanted to give you this  bbighug.gif

I lost my mum almost a year ago and the hospital/medical experience of the whole thing was truly dispiriting and awful. Much like your own experience.

You post made me cry and think about how tough it was for mum in the end.

I hope you get the answers you need about her care. Keep asking, keep pushing.

I wish you the best.

#22 FeralMinx

Posted 05 April 2012 - 03:57 PM

TZ yea I am in WA.  Mums been to freo a number of times and last time she went in to our local hosp (last wed) she got upset when they mentioned she was to be transferred again.  In the end they didn't 'need' to transfer her there.

QUOTE
Who's to blame I don't know but I would love to put a rocket up their a*se.
Oh I know that feeling.  There are select doctors and nurses who work in a compassionate, humanitarian, professional case management style (hereby know as the goodguys), and others who work in a 'work to live' 'just doing my shift' or 'I only like cases that I can resolve quickly'  style (hereby known as the tosspots) and unfortunately the tosspots can ruin the efforts of the goodguys.

The problem with congestive heart failure is that its not a predictable 'trajectory' like end stage cancer.  As a PP said, making the call that she is now not going to regain her independence/is going through a process towards the end, is impossible.  I hope we find people in hospice area who know all about that and can reassure us that mum is still a suitable candidate.  I hope I can convince my mum and relatives that it is reasonable to go in that direction too.  Im worried I may sound 'endist' or sickly 'keen' to lose mum, IYKWIM.

I will be gutted when she passes away (assuming she goes before me).  I try to imagine how I will live without her presence, and I struggle.  

But this last few days just blew my mind with the lack of 'place' for us to feel secure and part of a functioning first world community, for whom its important that people aren't left completely overwhelmed and suffering beyond measure.

Big hugs at those who have been here.  Its a hard road.

#23 Duck-o-lah

Posted 05 April 2012 - 04:14 PM

I don't have any medical advice, but I read your posts through and the pain, anger and frustration coming out of them is so intense, and I'm just so sorry that you're going through this. Glad your mum is a little better and managed to get some sleep, and I hope you can find a team of medical staff to help bbighug.gif

Edited by duck-o-lah, 05 April 2012 - 04:14 PM.


#24 TwiceTheWoman

Posted 05 April 2012 - 05:06 PM

I have read the entire thread and HillmanMinx your big rant was worth the time it took to write!  
I could cry my eyes out for you and totally know your frustration.

My mother had CCF and your rant was exactly as I experienced 20 years ago.  Being an RN was no solace, there seemed to be so few staff who actually really cared about my mother - or us.
Palliative care was not an option back then, as she wasn't deemed terminal.  It seemed you had better "luck" getting that care only with cancer.
I insisted that she be referred to a gerontologist who ended up being the most compassionate person I have ever met.
Seemed one of Mums new cardiac drugs was knocking her kidneys off - the reason why she was in renal failure and she confirmed my suspicion that several of the drugs were incompatible with each other.
The Gerontologist asked Mum's permission to admit her to hospital again and explained that it was to wean her off everything except Digoxin and Lasix and that she believed she would be more "comfortable" than rattling around filled with pills.  The improvement in Mum's condition was astonishing due to regaining full renal function again.  Of course she could never walk far, but she lived on another 2 good, full, happy years.

I will never understand the lack of compassion - or indeed, even simple interest, from so many staff - it was quite a shock for me.
I've stood in your shoes and cried tears of anger at not feeling heard or understood, so my heart goers out to you and all the wonderful care you're trying to give your mother.  I wish I was in WA to offer some help.

HillmanMinx - I can't recommend a gerontologist highly enough - they look at the full picture in it's entirety.

Edited by TwiceTheWoman, 05 April 2012 - 05:23 PM.


#25 Also sprach

Posted 05 April 2012 - 08:21 PM

HillmanMinx, I was in your position six months ago.  It's horrible and exhausting for everyone.  What Elemental said is true and maybe you should accept the inevitable.

QUOTE
The problem with congestive heart failure is that its not a predictable 'trajectory' like end stage cancer.

Yes that is true but the body can start to shut down.  Nobody really knows what will happen.  Maybe your mum has just had enough but can't say so.  It's really hard being the daughter, you don't want your mum to die but you don't want to see her to keep on suffering.

Maybe start to think of how her death will be.  My mum's death doesn't upset me too much because she chose to die on her terms and it was good death.  My father's I still cry about many years later, because it was horrible (cancer).

PM me if you want to chat.  It's an awful situation to be in.  Take care for yourself.




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Early last year I turned 35, and having just found out I was pregnant, I opted to have the new test for Down syndrome.

Geeky baby gear

If your family is more into Star Wars, gaming and the periodic table than most, you might want to check out these geek-chic baby items.

2015: the year of the sheep

According to the Chinese zodiac, babies born in the year of the sheep are creative and enjoy spending quiet time with their own thoughts.

Breakthrough genetic testing now available in Australia

Pregnant women will for the first time have access to locally analysed, accurate, non-invasive pre-natal genetic testing when the first Australian clinic to offer the services opens its doors next week.

Grandbabies: the babies born looking old

Not a day under 65 and a lifetime of struggle! That's the look of these newborns, who look adorably older than their real age. Social networking site Reddit recently featured user submissions of adorable grandbabies, here are our favourites.

Family kicked off flight after toddler seatbelt drama

An entire family was kicked off a Cathay Pacific flight when a misbehaving toddler refused to put his seatbelt on.

Stolen baby found after 17 years

A baby stolen from her mother's arms shortly after birth has been found through an astonishing coincidence.

53 creative pregnancy announcements

Announcing that you're expecting can be a time to express your creativity, sense of humour and imagination. Check out how other parents and parents-to-be have broken the news to friends and family.

IKEA hacks for the nursery and kids' rooms

Are you one of those that know the whole IKEA catalogue by heart? Love their stuff but want to personalise it? Here's some inspiration to help you realise the potential of IKEA furniture and fittings.

36 baby names inspired by food and drinks

A French court may have ruled out Nutella as a baby name, but that doesn't have to stop you from taking inspiration from the supermarket (or bottle shop). See what parents in the US have chosen for their delicious little ones.

Clever breastfeeding products

Check out this range of products designed to help make your breastfeeding journey more enjoyable, manageable and convenient.

 

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30 days of #PlayIQ challenge

Receive a daily email from Essential Baby during April with great play tips and ideas, then submit your baby at play photos to our Playwall, Instagram or Twitter for your chance to win.

 
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