[PreachersWife]

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.

[boatiebabe]

HillmanMinx

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

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.

[HillmanMinx]

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.

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.

[~*Twilight~Zone*...]

My mum refuses to go back to Fremantle, she keeps telling me she's only going to go to Murdoch (I think she means The new Fiona Stanley but that is some years off).

When she was in Freo my sister and I had to do a tag team during the day because she wasn't competent to make her own decisions and at times it was almost like they would wait for us to leave and do something we strickly advised them not to. My mum is in no way as sick as your mum. My mum is slowing losing her mental capabilities and doesn't have any short term memory so she often has no idea what is going on.

I'm in Baldivis so the to-ing and fro-ing to Freo was hard especially as I have my two kids to also look after

[duck-o-lah]

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

This post has been edited by duck-o-lah: 05/04/2012, 04:14 PM

[TwiceTheWoman]

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.

This post has been edited by TwiceTheWoman: 05/04/2012, 05:23 PM

[Also sprach]

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.

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.

[BeachedAsBro]

Hi OP, it's good to hear your mum is doing better today. I'm sorry that the health system is failing her.

I'm glad you wrote that post earlier. You should copy & paste it & email your local MP. Sounds like the local hospital could use more than a proverbial rocket.

[Autumn_Anonymous]

My heart goes out to you and your Mum.
Please pursue the palliative care/gerontologist options, they are wonderful (and caring) resources.
I'll keep an eye out for your updates.

This post has been edited by Autumn_Anonymous: 05/04/2012, 08:48 PM

[beaglebaby]

HM, it's a while since I worked in the area, but in the past I know that both RPH and SCGH had specialist heart failure nurses who helped co-ordinate the treatment and home care of patients such as your Mum. I would be VERY tempted to just take her to SCGH emergency next time she is unwell. I know it is less than ideal as they wont have her records etc. but is that any worse than the treatment she is getting now?

Some of the cardiologists I've met have been caring, compassionate people who see that patient as a whole. Too many however will be focused on improving her ejection fraction and other cardiac indices and may not even notice that her quality of life is declining.

Last time my son needed to go to hospital I begged the ambos not to take us to Fremantle, the sooner Fiona Stanley Hospital opens the better!