Palliative care - feeling helpless for mum

[vaud]

OK, bit of a vent. I love the PH community and welcome any constructive posts. I may ask the mods to delete this at some point, so don’t be surprised if it vanishes.

I'm sat in a palliative care ward with my mother who has had a very long line of health issues - nerve damage, long term nerve pain (25 years), IBS, a severe tremor (not diagnosed as Parkinsons), depression (hardly surprising), damaged spine from a fall, and then most recently auditory and visual hallucinations (neighbours stealing her cat, keys, money, etc). She was seen by a specialist and a brain scan was recommended. But events took over.

Over Xmas she wasn't great, and then last week she collapsed with pneumonia. All antibiotic regimes tried. Rapid decline with double pneumonia and then multiple organ failure.

I live a long way away but fortunately managed to make it for her last lucid awake hour to talk with her, hold her hand and tell her that I loved her, plus show her photos and videos of her grandchildren. She then rapidly slipped into a coma with distress, treated with various drugs to calm her.

Yesterday morning they withdrew treatment (high vent O2, etc) and moved to just palliative care slowly ramping up the drugs to keep her calm as slips away.

As for the NHS - angels. Nothing but the best and most compassionate treatment. Brilliant staff, very caring. Supportive with endless cups of tea and unlimited ward time.

So my vent…

I feel helpless. Totally shattered (we did go home to rest last night knowing that she was in the coma and only 20 mins drive, but I couldn't sleep).

Trying to make sure my dad does the basics like eat meals and drink as he is good at skipping stuff and isn’t 100% following a triple heart bypass.

I know she is not in pain, nor concious, nor able to respond. I am fully aware that she is just slowly dying and has effectively “gone” already. I am pragmatic and have no religion (not leat it would be a pretty f*cked up god that did this many things to one person)

So I/we have been sat here next to my mother, hearing her slowly breathe, rasp and twitch and slowly die over the last 2.5 days. They were thinking hours given the level of organ failure but it seems she is of strong stuff.

I have told her some of my key memories, held her hand, told her that I love her.

End of vent.

[vaud]

rigga said:

Feel sorry for your situation, unfortunately its one of life's sttier moments we all nearly have to deal with.
As for your comment regarding religion, I'm in the same boat, my son, who does believe in that stuff often asks me why I don't ..... I reply having watched several members of my immediate family suffer terribly before passing, what god would do that?
Not a definitive reply, but my reason.

Also, lots of complaints about medical care in this country, but one thing I've found, when in your last hours, the care and attention received is second to none, staff where I've been present caring for my loved ones have been outstanding.

Thanks all.

I'm with Stephen Fry on religion. https://www.youtube.com/watch?v=-suvkwNYSQo and apologies to all - I'm not trying to make this a religious debate, just sharing why I haven't got a faith to turn to.

Maybe I have been lucky with medical treatment in that we have an excellent GP, a great MIU locally and all emergency care we have received has been great. even down to the emergency mental health review she had was mobilised for new years eve.

PH is my outlet at the moment as my wife is 300 miles away looking after my young daughters, and my father is from the "no tears, men don't talk about emotions" school.

[vaud]

fesuvious said:

Vaud,
just be careful how many 'st at the end' visual and auditory memories you create.
They're not helpful.
What would your mum say / tell you to do now?

You know, that is a really, really good question.

Honestly? I don't know. She had a sense of duty - she was with her mother when she died (dementia), and her father (in a reflection of life, she arrived only a few hours before he died and was able to talk with him).

On the flip side we are all (effectively) humanists/atheists and so if she was the observer she would say that she was already "gone" some time ago...

Hence the dichotomy.

I am trying to balance the memories with positives. I am going to need to do a regular 600 mile loop on weekends in the coming months to support my dad - no other siblings or family... so decided I need something more relaxing / more fun to do it than the MX5 I drove down through flooded roads and M1/M42/M5 and have been car hunting.

My daughter loves playing "yellow car" and so maybe out of this we will end up with a silly yellow car and create some positive memories.

[vaud]

Skyedriver said:

Don't mess up your own life, that travelling can kill you.
Your Dad probably understands and copes better and more than you think.

Indeed. Over tea tonight he was already saying (his prompting) that he will probably sell up and move as he has no friends in the area (they only moved to where they are now 4 years ago and haven't built a network). I'm the only remaining relative, so he was considering moving to our village so he could spend time with his grandchildren (and me)

So travel would be short term, I couldn't do it long term. The public transport is rubbish to get here (mid-Dorset)... no motorways, no train, no airport...

[vaud]

Thanks all. Appreciated.

[vaud]

Bill said:

You or him in Dorset? And where's the other end. When I visit a friend near Manchester (from South Dorset) I fly from Southampton. Booked in advance it doesn't cost any more than fuel, although that is in a big 4x4.

It's good he's thinking ahead. My MiL died in July and my FiL is obviously grieving but moving ahead and currently on holiday with a friend.

Him in Dorset. Me in Yorks.

Yeah the holidays is a good idea. He hasn't had one for 8 years so I might start looking at options for September-ish and take him somewhere interesting.

[vaud]

Thanks all.

She is still going - despite all treatment being withdrawn and they expected 24 hrs given the multitude of issues and organ failure... 4 days later...

[vaud]

OK, it's over, she died late this afternoon. I was never sure if a short shock is better (sudden heart attack, etc) or a long goodbye when you can talk with them.

But I can say that watching someone slowly die in a coma, over days with palliative care is the toughest thing I have ever been through.

Thank you random PH-ers. Your views and shared experiences did genuinely help.

Thank you for being a great forum (NP&E aside)

RIP mum.

[vaud]

All,

Just to close this out for now - thank you all for you kind words and sharing your experiences.

I travelled back up to Yorkshire today, and the big hug from my 6 year old was very special, followed by the very direct "are you sad that you mummy just died daddy?"...

My dad seems to be okay; once the funeral logistics are done I will switch to me for a while and take some time out from work (who are being very supportive)

Cheers
Vaud

[vaud]

All,

Thank you again for your kind words and support on this thread. The least few weeks have been very, very tough - not sleeping well, recurrent extremely disturbing nightmares.

An "interesting" journey through the storm from Yorkshire to Dorset in an MX5 at 45mph kept me very focused on Sat/Sun.

The funeral was today and I do feel a bit of closure and a bit brighter for the first time in weeks. I tried to keep it light and told some stories and funny memories that I had.

Her friends and were very warm and not only said nice things, but also told me some nice stories that I was not aware of.

Not feeling great, but a little better. An afternoon walk on a very stormy beach helped clear the head this afternoon.



Will see how the next few months treat me.

Thanks again,
Vaud