PLEASE DO NOT REPLY TO THE OP'S QUESTIONS-We will leave this thread up to allow posters to offer their condolences if they wish

[debbiedesperado]

My mum is 80 and has chronic COPD. She has had no quality of life for the past 18 months and has been in and out of hospital frequently. Yesterday she was in a lot of pain in her leg, it was totally paper white when I looked and she couldn't move her toes or feel her leg. Up to a and e we went.

She has a blood clot in her leg. They said for a healthy person they would operate straight away however she wouldn't survive the operation. They put her on morphine, antibiotics and a drug to try and dissolve the clot.

The doctor and surgeon this morning said that nothing is working and at this stage they would want to amputate the leg but she won't survive the surgery so basically there is nothing they can do.

My mum knows what is going on and is quite calm about it although she is still in some pain and hasn't eaten. Palliative care is starting tomorrow.

I feel really overwhelmed and numb, her leg is turning black. What can I expect from here? It seems they are just waiting for sepsis to set in and this sounds like an extremely painful death.

What should I expect from here? Does anyone know a timeline that I can expect deterioration? I am trying to prepare myself but also thinking surely there must be SOMETHING they can do? It doesn't seem right to just let her lie there with a black leg and let sepsis set in.

I would also like to say how shocked I am at some of the posts in here with people who display such a lack of medical knowledge about end of life care but throw their tuppence in.
All this rubbish about NHS costs/ euthanasia/ lack of care is both deeply offensive as a NHS nurse and disrespectful to the thousands of medical and support staff who deal with life and death every day as a means of employment.
For those saying they would want their family member operated on have a mo g hard think about what that actually means.
As someone who prayed, bargained and silently begged for more time for my df as I wasn’t t (are we ever) ready to lose him, I did accept what was actually in his best interests.
Sending you lots of hugs and care OP

So I have a fair amount of experience with palliative care but not in a professional capacity. My FIL died of COPD in his mid sixties. They WILL keep her comfortable so please don’t worry about the pain. I truly believe every person having palliative care chooses when to die. So for FIL it was a week after changing care pathways, for my grandpa it was three weeks. Some people rally which can give false hope. Some people choose to die alone, others want to be surrounded by family. There are some brilliant resources about what to expect. Somethings can be scary at first. But death is part of life, you can’t have one without the other. If your mum may want to see a vicar, even if she has expressed no desire in the past, now is the time. Thoughts and prayers with you at this difficult time.

I agree. Operating was not an option for my mil but she was given strong pain killers. She had lung cancer among other things and had help from a MacMillan nurse and the local hospice although she stayed in her own home. An operation at the OPs mum's stage would cause more pain and distress and ultimately be pointless.

Also, although cost is not the OPs priority, operating on a person when there is no chance of surviving is wasteful and could deny an operation to someone else with more prospect of benefitting from it.

They cannot offer her treatment that they know will kill her. My feeling is it would be more like an execution than care. And she would be going under the anaesthetic knowing that she would never come out of it.

These decisions are not taken lightly.

I am so sorry you're going through this OP.
Personal and professional experience of similar situations.
Palliative care will keep her comfortable, they can manage the symptoms and she shouldn't die in pain. As she becomes agitated they can give her medication to calm her, if she is in any pain they will give her pain relief, she will be able to have oxygen to help her bre

The time can vary.

I'm glad your DM is feeling calm.

I'm so sorry, hug her and enjoy your time with her.

It's very difficult. 😕

Entered too soon, help her breath.
She will have her loved ones by her side. This is what palliative care do on the daily, ensure good deaths, I'll be thinking of you x

Thank you @olympicsrock for your generous and compassionate post. My dad recently died in a similar situation to the OP's mum, except his blood clot was in his mesenteric artery. They wouldn't operate because of the damage to his heart from the heart attack he'd had which had caused the clot.

I wish someone had been able to explain as kindly and clearly to me then what would happen. It felt such a cruel decision at the time, like some posters here I couldn't understand why they wouldn't at least try to save him, but I know now it would have been the wrong thing to do. As it was, my dad had a peaceful death and he was in no pain.

Thinking of you, OP.

I feel you OP, I hope you are doing ok.

I was in a similar position with my dad. He had pulmonary fibrosis, and we later discovered lung cancer. He was in hospital with a chest infection, when he took a turn for the worst, they said due to his PF and potential lung cancer it wouldn’t be kind to operate on him, basically he wouldn’t make it through the intubation. It feels barbaric I know to not even try.

they won’t let her suffer, they didn’t let my dad and his final hour was very peaceful.

sending you strength x

I recently lost my dad palliative care was amazing
totally different situation as had him at home . But it’s all geared up about making them as peaceful and pain free as possible
as for the operation it’s all about quality of life . COPD and anaesthetic massive risk . And recovery and rehabilitation she wouldn’t even be able to get to the toilet .Being immobile would have a negative effect to her health.

my dad had been In poor health for years had dementia and poor quality of life .A few years ago he needed an operation we had to consent as a family .My sister said yes and I didn’t want to go against her(I wish I had) all it did was buy him years of misery with no quality of life Or dignity. She did it for her not for my dads best interest

having watch him suffer pleases please please make any decisions on there quality of life

it’s horrendous and you want them to last for ever

@Howamihere actually, to attempt surgery would be euthanasia as she would definitely die. At least this way she will have a painless, calm death rather than all the pain and stress of an operation that will kill her.

OP I'm so sorry that you're in this situation,of course you didn't ask questions due to the shock. Write some questions down, so you don't forget.
Please be assured that the morphine will take away any pain. As others have said, just be with your mum, play her favourite music, hold her hand, tell her that you love her.

A friend's mum had bowel cancer in her 80s. My friend consented to surgery but wished she had

(Posted too soon) wished she hadn't as her mum died in a much more horrible way.

OP I am very sorry for the pain you are going through. If you only manage to read one single reply on this thread please make it @olympicsrock. Your mum is calm and at peace with what is happening by the sounds of it. I wish you the very best.

I'm so sorry and it does sound cruel. My great uncle was 96 when they amputated his leg. He survived the operation but did die 3 days later.
He was happy though after the operation and wasn't in pain but this was a long time ago, about 20 years, so perhaps now they're more likely to look at how their patients are to survive.
I suppose its a positive that you have the chance to say goodbye and usually palliative care is very peaceful.

@NorthernLights5 your not "just" a carer. As a nurse carers are my eyes and ears on the floor as they spend they most amount of time with my resident. If one of them tell me something is off with my resident I 100% believe them and act accordingly. I would be lost without my carers🥰

We had similar with Dh and ended up paying for all his cancer treatment and operations and months in a private hospital.

I really can’t put into words how angry I am at hearing this type of thing.

DH is still with us and still in remission

They can’t wheel her into theatre and knowingly kill her.
If this is the plan, who gets to pick the day, time of death? What if an urgent case comes in and they need to reschedule the moment of demise?
Do patients stay in hospital waiting for their allocated slot? Or do we build new centres where people stay whilst they wait for their appointment for euthanasia?

All sounds like hyperbole but this is the path we will head down. Many conditions are not dissimilar to incurable cancer in that eventually there will be a ceiling of treatment and the risk v benefit will tip heavily towards risk.

OP seems lovely and understandably looking at any way that her mum can be pain free and comfortable. I would feel the same.

I don't have experience of COPD but am currently witnessing what palliative care looks like with my dad. He has dementia (fairly late stage but was still able to converse, just no short term memory, or much memory at all from the last 10 years or so). 4 weeks ago he had a stroke, a huge bleed on the brain. He survived that, amazingly, but wasn't able to talk or move one side of his body afterwards at all. He was also unable to swallow. After trying a feeding tube and feeding by mouth, unsuccessfully, they have decided nothing more can be done and the dementia means rehab would be impossible.

We then moved to a palliative care situation. This means he's had all nutrition and his IV fluids removed and is constantly receiving drugs through a syringe driver to keep him comfortable and in no discomfort, anxiety or pain. I had no idea how long this could go on for, it's now been 10 days since he had any fluids and he's still going. We've been told it can be anything from a few days to a couple of weeks. It is a very hard experience, but the palliative care team have been amazing, checking him regularly and they then recommend the appropriate medication to keep him comfortable to the nursing staff. The nurses will then give as required and if we say he looks agitated or in pain at all they will give more. We are here a lot with him, although he's in hospital he has a side room and we can stay as long as we want, or overnight which we're doing a lot. I had no idea what to expect, but actually for us the info we've had since he moved to palliative care has been clearer than when they were trying treatment. It is very, very hard, and feels like you are just 'letting' someone you love die, but the point of palliative care is to ensure there is no pain, discomfort, anxiety, nausea etc. The palliative care nurses are something else, such care and compassion. Thinking of you, and wishing your mum the most comfortable loving end she can have. You will find strength to get through it and be able to be there with your mum which is a wonderful gift.

Beautiful post @olympicsrock . Compassionate and thoughtful.
Good luck OP. I hope your darling mum is peaceful and calm. More unmumsnetty hugs from me.

@olympicsrock Your kind, informative post also brought tears to my eyes. I think gathering as much knowledge as possible will be helpful as the not knowing and lack of communication can be very hard to deal with.

@spidersenses I’m very sorry for the loss of your dad. His experience sounds very similar to my dad’s. I would now always urge anyone to try to move their loved one to a hospice or home if at all practical.

I’m so sorry you’re going through this OP. Please know that palliative care are incredible and will keep your mum comfortable. When my gran died the palliative care nurses were happy to explain everything that was going on in a compassionate and clear way. Ask questions and remember the most important thing is your mum’s peace and dignity.

Agree. Telling the doctors not to attempt resuscitation on my df (different situation, intubated and only in his 60s) was the hardest thing I have ever done. They presented it as a choice but with stark warnings about what his quality of life would entail. I wanted to keep him around at all costs, but this is certainly not what he would want 💔

OP I am desperately sorry about the situation your dm and family are in. I hope that she is comfortable* *and that you and her important people are able to be with her 💐

That must have a be horrendous time for you and your DH, Kennykenkencat.
So sad reading everyone’s experiences

It is a very long time since I assisted in day surgery where general anaesthetics were administered. I think it’s quite hard for anyone without medical training and knowledge to disentangle the emotional side of illness with known procedures. It would be very wrong to put this poor lady through a GA and I see that @olympicsrock has written and explained with great detail and knowledge and I also wanted to thank them for taking the time to do so.

My Father knew he was dying and completely accepted it. He actually refused all cancer treatment, he was 83 at the time. He could have extended his life by maybe up to a year but decided he didn’t want to. His care was excellent and I cried with the lovely hospice nurse who was there with me when he passed. He seemed very happy when he was coming towards the actual end. We had chatted about various things and he was looking forward to seeing the sister he had who died when she was a very small child back in the 1930’s.

Quite often people just before they die perk up for a day, my Dad did and asked for fish and chips of all things, which he had and enjoyed. My father in law did the same, I had to explain to DH that it actually meant he was definitely going to pass soon. I’m just writing this because it gave DH some sort of hope and it worried me greatly.

Sending love, reach out here and in real life.