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.

[Butter Face]

Sorry to hear vaud. stty situation for you to be in. Take comfort in the fact that you are there for your mum to just sit and be with her.

I often think of how much I owe my mum, all the hours she probably spent awake with me a as a child, all the time caring for me when I was sick, all the time I fell down, hurt myself, got emotionally hurt etc and she was always there. One day it will be my turn like it is yours now. Be strong and just be there, sometimes we are just 'helpless' but that's not your fault.

Good luck mate!

[rigga]

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.

[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.

[thatsprettyshady]

I went through this with my mother in 2016, It really did get to me as I always felt I could do "more" to help and it really cut me up afterwards as there is a feeling of guilt of not being able to help. I don't really have much advice other than sharing it here and to family/friends really does take the power out of the emotions and helps you cope.

Best wishes.

[LHRFlightman]

Butter Face said:

Sorry to hear vaud. stty situation for you to be in. Take comfort in the fact that you are there for your mum to just sit and be with her.

This. Plus keep talking to her, talk about those good memories you have of her. I've been told hearing is the last sense to go so chances are she hears you.

All the best.

[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.

[PositronicRay]

LHRFlightman said:

Butter Face said:

Sorry to hear vaud. stty situation for you to be in. Take comfort in the fact that you are there for your mum to just sit and be with her.

This. Plus keep talking to her, talk about those good memories you have of her. I've been told hearing is the last sense to go so chances are she hears you.

All the best.

As above, and reassure her that everything is taken care of, dad is OK, and it's OK to go.

[ruggedscotty]

its not easy.

The transition to passing away varies, I worked with a guy, he just dropped, out like a light, a few minutes of confusion and then nothing. massive stroke. My mother god bless had cancer and it done her in over many months. ended her days in a hospice, father there every day, we tried to get there as much as we could with work and all, was for around a year or so, and it was very hard going.

Edinburgh to Ayr multiple times a week aint great.

Now religion, think were in a period now where many are actually questioning it, not many believe in life after death, but hedge their bets. I think what we have is the hear and now. and we need to make the best of it, not try to do good for the chance to get into heaven. no it should be to help others and live a life that benefits others as much as possible. that's religion, the church of the people, not the alter of the sky fairies.

Wish you every bit of luck on this, I know how hard it is.

[NDA]

Both of my parents took several months to die - it was, as it is for you, distressing to watch. Unfortunately you will feel fairly helpless - your mother is not going to recover and there's nothing you can do other than stand by her and be with her at the end.

I am sorry you are going through this, it's hideous. Memories of earlier years, when your mother was a tower of strength, will be the memories that endure. Not the end. The end is always going to be an undignified and hollowing thing.

But the fact that you are there is so kind. And a kindness that is quite priceless.

[Scrump]

As tough as it must be to be there for you, it is better than not being there. My thoughts are with you and your family.

[NDA]

anonymous said:

[redacted]

Awful. Sorry to read that.

I totally agree about the sudden death thing - my father in law hit a drive on the 18th hole and died with a smile on his face in his early 60's. Devastating for everyone, but I have often compared it with my own fathers long and lingering death. I know which I (and you) would probably prefer.

It's such a dreadful subject really - but, it's something that most of us go through. I do think that sharing and discussing is helpful - there have been many such threads over the years which I believe have helped in some way.

[RDMcG]

It is a very hard time, and the drugs are absolutely the right way to help her through. I have been there more often than I ever expected. My mother died at home and that was a huge mistake. Always so much better in palliative, and amazingly the staff is generally very caring and sympathetic. Very sorry for your ordeal. Wishing you the best.

[Bill]

There's no getting away from it, it's st. But you are there for her and that is the important thing.

One thought: the 600 mile round trip to help your dad is going to get dull PDQ, so it's worth considering flights or the train to take the edge off the travel once you have a routine going. I only mention it as I found having something productive to do when my mum was during was a great distraction.

ETA soz 600 miles. Even if you take a chunk out of the middle it'll help.

Edited by Bill on Saturday 18th January 18:22

[Skyedriver]

Take car Vaud
Been there, understand your pain.

Remember the good times.

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

[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.

[Bill]

vaud said:

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...

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.

[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.

[Bill]

vaud said:

Him in Dorset. Me in Yorks.

Both big counties... It looks like I'm lucky with the Southampton Manchester flight, but Newcastle to Bristol might work for you.