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’m so sorry OP. I can’t begin to imagine the sense of turmoil and loss you are already feeling.
lean on those around you. Sending love 💐

I’m so sorry @debbiedesperado .

Get a meeting op. Write down all the qs you need to.
I’d add so many people here palative care and think this means the end is nigh.this isn’t the case.my friend has been under palative care for a year. So you need a prognosis from the team. And a care plan etc.
your in shock.it must be the most horrific thing to hear on every level.
are you able to have an honest conversation with what your mum wants.
have they given options of where she can safely be. And if so how to make that happen.
get yourself a support shield.wrap yourself up in them and don’t br alone in this.
keep talking to your mum too. This will help you both.
keep rested.
keep nourished.
I no this is the worst thing.and to have to process.but with it being quite sudden have you had time to put the “what’s next” documents in place or correct.

Have you asked about epidural anaesthesia for the surgery. It may be safer than a GA for her. It genuinely may not be an option though.

Honestly spend time with her trying to savour what time you have left. The doctors don't take these decisions lightly but it would be inhumane to put someone through an operation you know they won't survive. She would likely die in the operating theatre with no family around her. The goal now will be good pain management
and eol care. I know it sounds quite bad saying they are just leaving her to get so I'll that she dies but it's the lesser of the two evils. She will unfortunately die either way, just one way is way more dignified than the other.

I'm so sorry for what you're going though.

I have a lot of experience with end of life care and I thought I'd write a few things that may make your mum more comfortable. Although I'm just a carer so feel free to ignore!

The palliative medications will make sure she isn't agitated or in pain. Enquire about a mouth care kit including a soft silicone brush to keep her mouth clean and moist. Pineapple juice is really good for this. Ice lollies may be comforting too if her mouth becomes dry and she is unable to drink.

Vaseline or similar is also helpful to keep lips from going dry. Ask her in advance if there is any music or even tv programs she would like to listen to.

Finally, when the time is near carers/nurses will know. Talk to her about anything and everything to let her know you're there.

So very sorry for your loss xx

@NorthernLights5 > Thank goodness for people like you. You're definately not 'just a carer'. OP, thoughts with you.

Dear @debbiedesperado , wishing you and your mum peace and no pain as you go through this dreadful situation. xx

"My Uncle had me write a list at his bedside, as to which of his treasures went to which friends ( including his 1970-80’s porn stash, we won’t go there). It gave us a chance to talk about his final wishes before he drifted into unconsciousness."

I need to know - who did it go to?? Were they pleased/grateful?? 😂😂😂

Thinking of you OP

Sorry you are in this awful situation 😔 hopefully the palliative care team can come and talk through the plan for pain relief and you can make the most of your time together.
Unfortunately for a person with severe copd getting them to breathe for themselves after anaesthetic is very difficult, they would likely need a long ICU stay and then pass away whilst intubated.

@debbiedesperado,
Sending your Mum, you and your family sincere wishes for as painless and peaceful a time as possible.

Don't underestimate how much of a massive reassurance and comfort to your Mum you're being. Go gently on yourself x

They won't do a spinal on someone on powerful blood thinners - due to the risk of a bleed around the spinal cord.

There would be nothing peaceful about her passing in theatre. It's not a pleasant environment, she would be taken down away from family, with a hospital gown on (not her own lovely pjs) with no familiar sounds or smells, she would have multiple cannulas, a catheter and a tube down her throat, theatre is a very cold environment, she would have to fast for theatre. If she didn't die during surgery she would not be a candidate for ICU and would never get off a ventilator, this would then mean them potentially having to terminally extubate her which brings some ethical concerns. Is this what she would want?

If she continues as is she will have her pain managed, family can be all around, she doesn't need any interventions (constant blood pressure, blood tests, cannulas...plus it sounds like she may have a problem with the blood flow to her arteries so potentially harder to bleed/cannulate which is sorer for her). She can have on her own clothes/blankets and things which bring her comfort. She can be brought in all her favourite foods and have close relatives stay.

I'm so sorry you/your mum/ all the family are going through this, it sounds like a critical limb ischemia instead of a DVT, when I have looked up the evidence from one study every participant passed within 42 days, but the median was 3.5 days from the decision not to operate until they passed. If you want her to not be in hospital speak to the hospital palliative care team and see how reasonable an option that is/whether hospice is a viable option? If it was my mum id be a little concerned about taking her home as i would expect pain management to potentially be a little complex and require some trial and error. Make sure she buzzes the nurse every time she is sore as in palliative care the long acting pain killer will be decided by how many doses she has required for 'breakthrough pain'.

This is not a cost saving measure by the NHS. Day to day doctors and nurses are not in any way concerned about the cost of intervention, it does not come in to judgement when making a plan for someone. It's not neglecting the elderly. Her chances of survival are so low that they have deemed her unfit to go through surgical intervention.

Thinking of you and your mum 🙏she doesn't suffer.

If they operate on your mum the pain & discomfort will increase. She will be heavily sedated and will sleep most of the time. Putting her through a major procedure seems cruel and will not give you all more time together. Palliative care seems the gentler option for you all. Write a post of questions to ask the consultant or registrar, then discuss with your family & mum. Difficult times for you all.

I'm so sorry, this must have been a terrible shock for you.

Having been through close relatives going through palliative care before, I'd try and get signed off work on Monday and spend as much time as you can with your DM.

Sepsis isn't pleasant but now she's on Palliative Care, she should have some decent painkillers.

Do say to her all the things that you want to as soon as you can too before the infection and morphine take over.

I can't begin to express how sorry I am for you and you DM

Ah OP
I'm so so sorry you're facing this. The words 'palliative care' are hard to take in when you are hoping for a cure.
I'm guessing by now you have a list of questions. It may be worth asking at the chaplaincy if there is someone who will have to time to speak to you as well as medical staff. No question you have is silly.

I have been here, twice. Its really good that your mum understands and is calm. It's so so hard, but it will mean absolutely everything to her that you are with her as much as you can be.

Wishing you all the strength in the world 💐

Try and find an alternative to GA.

I am sort of in a similar position where my mum is too unwell to take a GA and is critically Ill with heart failure.

I just wrote a long post and lost it. Having been through similar recently:

If you can get your Mum into a hospice, do so. Mention this asap, before she is too ill to move.

I was told that my Mum couldn’t go home as she needed more care than the NHS could offer and I wouldn’t be able to cope on my own. With hindsight, and seeing how much money she unexpectedly left, I’d have paid privately for 24/7 care, but this didn’t look like an option at the time.

Make sure she is pain free. The hospital will top up the drugs if she gets agitated or seems in pain.

I know it is painful for you to see your mum this way and having had several major surgeries myself, I can totally understand the decision not to operate on her. I am disabled and due to chronic illness, my quality of life isn’t great. Despite being a few decades younger than your mum, death will be a release from my pain and suffering when it comes. It sounds as though your mum feels the same way.

I can understand why you think it is cruel to leave her like this. I think surgery would be more cruel to her as there is a risk she could survive and be even more poorly than she is now or suffer a slower, more excruciating death. I had a family member, who died a few years ago, who had had no quality of life for several years. I discussed the situation with another person close to him and we agreed it was time to let him go so I gently talked to his spouse, who had POA. They agreed as all it would have done is prolonged his suffering and reduced his quality of life further.

I do understand. My dad died far too young and when I was still a child.

Really this is unfair and inflammatory in this case.

It sounds to me like OP's mother has gone through a terrible couple of years and is at peace and ready to go. Why put her through anything else? It sounds like the OP is not ready to let her go but it's the patient that comes first.

I've experienced this with elderly people and have had a relative that wouldn't let go and insisted on unwanted treatment. All it did was cause unnecessary suffering to the patient.

Older people sometimes reach a point where there at peace with the idea of death. They'll often stop eating quite naturally at this stage. We're so afraid of death in this country we often rally against it even with elderly people, which is why doctors cannot have honest discussions with relatives. When my mother was terminally ill and had not come round after an operation, they were amazed that we didn't insist on them bringing her round. We said why would we want to wake her up to be in pain and suffering when she could pass away peacefully, which is what she did.

The mother seems happy and that's the important thing and who the doctors should listen to.

In the later final stages of COPD my mum wasn’t for ICU/intubation ( 20 younger than yours) it’s a really
difficult disease to cope with intubation. If they could truly save your mum by operating they would. It’s not barbaric as a previous poster said it’s acting in your mums best interests they can’t just take her to theatre knowing it will kill her. It’s ethically wrong.

They can acknowledge palliative care and make sure she is comfortable. She shouldn’t be in pain. Write down questions and make sure you see teams and get any answers and clarity that you need that will help at this time.

It sounds like your mum has been through a rough time with it all ( I know how shit this illness is) and has made her peace ultimately that this may be the end.