feeling pretty low

CiDeRmAn

Hi,

Trying to feel my through stuff right now with an uncle of mine.
He is in his late 70's and had a pretty poor run of it.
Some self inflicted, in terms of years of poor diet, no exercise and poor hygiene.
This hasn't directly led to his recent diagnosis but has shrunken the available treatment options to zero.

He spent five weeks in the Beacon with a following diagnosis of Prostate cancer, aggressive, and no treatment aside from hormone injections to shrink the mass, which was causing massive issues for the bladder and kidneys.

This then was "re-assessed" to actually be bladder cancer, and he was discharged from the Beacon with bi-lateral DVTs, a course of anti-coagulants and no plan to manage his CA of the bladder, we were assured it would follow him to the care home.
I rhetorically asked the consultant that the scans and treatment had all been irrelevant as a result, he agreed.

But no new scan for the secondaries from the actual CA and no treatment schedule, and he was discharged to a nursing home to convalesce.

A week into that he continued to deteriorate, with his breathing becoming shallow and he unable to support himself.
Seen by a specialist insitu, he was discharged from there, after 6 days, to the Mater Private where within 5 hours they did more good work than the Beacon did in 5 weeks.

The Dr in the ED took me aside and confirmed secondaries, the palliative nature of his condition, the complex medial needs, the imminent risk to his heart and so on.
Also, a discussion was had on DNR status, and I had that talk with him, which was a most difficult thing.

I suppose I just need to talk about it, hence this post.

Ironically, I am a Clinical Nurse Manager in the real world, and I have managed service users through this process, and recently attended a conference all about it, but it's very very different when you are in the middle of it, trying to be strong, give good advice and try to organise everything else too.

So, I'm doing my best to support him, he knows his condition and what it means, but sometimes seems to not know, it's kinda fades in and out.
I'm at pains not to make decisions for him, but do worry that the way I frame a thing might be making an option a better one for me, rather than him.
This again is ironic, given my line of work and the focus here on capacity, consent and advocacy.

So that's kind of it.

In the middle.

Trying to make him as comfortable and happy as he can be, but not treating him as a child who needs to be protected from hard things, because good decisions and authentic choices can only come from having all the facts.

The Princess Bride

I hope that the following makes some sense.

Because of your nursing background, you're in this awkward place because you cannot un-nurse yourself in order to process your uncle's illness.
There might be the added pressure of other relatives looking to you for a solution, based on your own nursing background.
It doesn't matter if your experience is in a different discipline entirely, in their eyes a nurse is a nurse is a nurse.
So you should know everything.

Also, and again these are merely suggestions based on my experience and observations.
You could be over thinking it because as nurses, we tend to listen to our assertive and proactive side, so doing little or nothing isn't an option we're used to.

You might, perhaps, be grieving.
Maybe you're aware of this and maybe not.

Has the local palliative care team linked in yet to discuss their plan?
The earlier the better without a doubt.

I'd suggest just spending time with him.
What's important from now on is that he's comfortable-symptom control- and is treated with dignity and respect.
So if he can express what he'd like, and it can be done, that'd be a positive difference in a difficult situation.

That's it, sorry it's rather longwinded.
Mind yourself as best you can.

CiDeRmAn

No palliative care involvement as yet, but we've a meeting tomorrow with the Mater Private consultant.
That'll hopefully establish a plan for his palliative management and, also hopefully, give him an opportunity to look to making the most of the time ahead.
Certainly this hospital and their staff are doing excellent work.
My own manager and also my colleague in the role have been read in to what is happening and have been nothing except most supporting, which is great.
Whatever comes next I feel better today than yesterday, so thanks again for your advice.

CiDeRmAn

Just had the meeting with the consultant and he gave the worst news, though nothing unexpected.
So, how to tell a confused man this kind of thing?
We'll be hearing from the palliative team next and what kind of location will give him the least clinical type setting while still having the expertise to provide for his complex needs.
I'd say it'll be a hospice over this side of the city.
And I know how great they are.

The Princess Bride

Even though bad news was expected, it's still a shock when you get it.

How do you tell him ?
Do you think he might have an idea himself, or is he too confused to know?

The palliative care team will be able to offer so much support to you both.
It would be good to have chatted with him beforehand to see what he feels or thinks, but you know him better than any of us or them, so take it slowly.

CiDeRmAn

This was discussed in a conversation last week, when the previous hospital made many mistakes but did clearly say that his treatment was to be palliative management, but looking at a longer time frame.
So he does know, and has mentioned that he is dying on a number of lucid occasions.
I have to speak to his solicitor on Monday about things and I'll be awaiting contact with the head of the palliative care team as well.
Such a clinical setting isn't where he needs to be over the longer term so we will await guidance and look to the hospice for the kind of comfort and care he will need, once he stabilises.

CiDeRmAn

So, my uncle passed away this morning, having spent the last two days in the Hospice in Blanchardstown.
Staff there are amazing beyond words, as were the staff in the Mater Private.
The Hospice team were brilliant with his pain management over the final two days and made his passing peaceful and dignified.

sweetie

Very sorry for your lost.

Water John

Just read this thread. My sympathy to you. You did very well for him and that's what matters.

looksee

So sorry for your loss Ciderman, but it was his time, and a genuine release. Be good to yourself now, its been stressful and you will need time to gather yourself. Take care.

Tom Mann Centuria

CiDeRmAn wrote: »

So, my uncle passed away this morning, having spent the last two days in the Hospice in Blanchardstown.
Staff there are amazing beyond words, as were the staff in the Mater Private.
The Hospice team were brilliant with his pain management over the final two days and made his passing peaceful and dignified.

Very sorry for your loss cidey, hospice staff are brilliant generally, Ireland needs more hospice care.

CiDeRmAn

Been planning my first funeral yesterday and today, more tomorrow.
So much stuff to do!
Funeral directors are brilliant though.

The Princess Bride

My condolences to you, only seeing this now.
He was very fortunate to have a nephew so caring to be there for him these past few weeks.
You'll be busy these days, remember to take some time out for yourself after the funeral.

Take care.

CiDeRmAn

Thanks for the support.
I've been, frankly, shocked at the level of such support in the work place.
They have been fantastic, as has everyone and I know that sounds like a cliché but it's true.
Still a lot to get done, such as registering his passing and stuff with solicitors and sending memorial cards but that can be done in my own time.
Looking back I can see that my wife and I had the past two years trying to get to grips with this gentleman's health issues and had no choice but to respect his lack of engagement, which was frustrating.
I'm unsure if anything would have changed the outcome, but it might have made planning for time left better, I don't know.
Thanks again for the kind words and support from you all.

Peatys

He knew he was lucky to have someone like you in his life.
Take care of yourself.