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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

338 replies

debbiedesperado · 29/10/2022 23:38

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.

OP posts:
Pottedpalm · 29/10/2022 23:40

Oh my goodness; I have no knowledge of this but send you my thoughts and prayers .

OnTheBrinkOfChange · 29/10/2022 23:42

I am so so sorry for you and your mum. Do you have any other support? I don't know what they can do. My mother is very elderly and so was her sister. When her sister died aged 100 she literally stopped eating and died within a few days. That was during Covid and I think the loneliness of being on her own in the nursing home bedroom made her think she wasn't going to be bothered living any longer.

Your poor mother, I hope they can give her something if she gets distressed. 💐

DoItAfraid · 29/10/2022 23:42

I am so sorry I have no advice as I know nothing about this but I just wanted to say how sorry I am that this is happening 💐

Fizzadora · 29/10/2022 23:42

Just a handhold for you. There is nothing they can do apart from manage her pain to try and keep her comfortable which they will do.

FifteenMinutesOfMeTime · 29/10/2022 23:42

I'm so sorry. I hope someone more knowledgeable will come along soon with answer your questions but wanted to send you and your mum hugs and best wishes.

Original poster
debbiedesperado · 29/10/2022 23:46

Thank you all, I do have support, an amazing family around us who have been visiting mum all day, she's very loved and has lived a good life. When I was told this morning I was alone and very shocked, I feel like I didn't ask enough questions so say thinking and thought I'd ask on here. Of course will ask more tomorrow. It's just so sad because she is acting her usual self today (just very tired and in some pain) but she's chatting away and I just wish there was something they could do to prevent this. The only saving Grace is she knows she is dying and seems very, very at peace and calm, I almost wonder if she's relieved given what she has been through the past few years but It sounds very, very painful and I don't want her to die a horrible death like that 😢

OP posts:
FusionChefGeoff · 29/10/2022 23:46

My limited knowledge of palliative care would suggest she will be given a lot of heavy duty probably opioid painkillers and kept as sedated as necessary.

Can you ask the consultant / Dr what to expect?

Original poster
debbiedesperado · 29/10/2022 23:47

I just think, they say she will die on the operating table, but she will die if they just leave her and in a lot more pain. So couldn't they just try to operate? If she goes then she goes peacefully. Not operating and leaving her seems cruel.

OP posts:
TruJay · 29/10/2022 23:47

Firstly, I am so deeply sorry you and your mum are in this situation.

Secondly, what in the world?! It’s sounds utterly barbaric, there’s nothing else to do?! This just seems absolutely awful, how can they just leave her to die this way?

Obviously I am not medically trained and I don’t mean to cause offence by comparing but we have a friend who currently has a blood clot in his leg (has also had them previously), he’s on medication to treat it and surgery hasn’t even been mentioned and he is ‘a healthy person’. A second clot has appeared in same leg but different place and medication has been upped, doc doesn’t seem overly concerned although friend in a lot of pain. Are there different types of clots? How can our friend be getting treatment but your mum is being left this way? Is medication not working due to your mum’s other health conditions?

I am so so sorry

montysma1 · 29/10/2022 23:48

Surely to god they should let her take the chances with the operation? If she didnt make it through surgery and died on the table, surely thats a more humane way to go than what they have in mind?

Original poster
debbiedesperado · 29/10/2022 23:48

FusionChefGeoff · 29/10/2022 23:46

My limited knowledge of palliative care would suggest she will be given a lot of heavy duty probably opioid painkillers and kept as sedated as necessary.

Can you ask the consultant / Dr what to expect?

Yes I will ask more questions tomorrow. Kicking myself for not this morning.

OP posts:
Original poster
debbiedesperado · 29/10/2022 23:49

montysma1 · 29/10/2022 23:48

Surely to god they should let her take the chances with the operation? If she didnt make it through surgery and died on the table, surely thats a more humane way to go than what they have in mind?

My thoughts exactly.

OP posts:
AnghofioPopeth · 29/10/2022 23:50

I'm really sorry, this must be so difficult. I would say everything you need to say now, so that you have no regrets.

Also ask your your mum if there is anyone she would like to see or speak to. If she has faith, if she would like to see the chaplain.

If you know of any music she particularly loves, make a Spotify playlist to listen too quietly in the background.

If your mum wants to go home, ask the hospital if they can facilitate this. They could get the pain relief set up, if she would be okay to be transported. The district nurses can set up the correct medication for her pain.

Do not be afraid to ask for more pain medication or something to help calm her if she needs it.

Luredbyapomegranate · 29/10/2022 23:51

Oh OP - it’s so hard to see your mum like this.

But tomorrow please talk to the nurses as soon as you get in and say you need a meeting with the Palliative care team so both you and your Mum understand how her pain will be managed. The priority will be to keep her comfortable, and if it’s a good team (I am sure it is) they will automatically do this well - but it’s good to keep them on their toes and reassure yourself so you can focus on spending time with your mum. They will also be able to tell you how long she might have.

ivykaty44 · 29/10/2022 23:51

montysma1 How do you give anesthetic to someone with chronic COPD?

Luredbyapomegranate · 29/10/2022 23:52

montysma1 · 29/10/2022 23:48

Surely to god they should let her take the chances with the operation? If she didnt make it through surgery and died on the table, surely thats a more humane way to go than what they have in mind?

No this is really not the case. The priority will be to manage her pain.

Bigslippers · 29/10/2022 23:52

Rest assured with palliative care she wont be in any pain. 💗

You need to speak to the doctors what the next stage will be. Pain relief etc

Ive been through this with both parents and the timelines moved constantly

Have they mentioned moving her to a hospice?

Its going to be tough OP as I know you’re aware but you need to speak to the nurses and doctor for what the plan is

Its an awful time OP because we feel as though we cant make it better. By being there and making her comfortable you are supporting her and carrying her through this

Love to you x

Codswallop20 · 29/10/2022 23:54

If they operate she probably will not survive the anesthesia and that is why they won't, she would not cope with being intubated.

The medicines they will give her will keep her comfortable and pain free. The clot busting drugs may yet work. They sometimes do.

Look after yourself and I wish you and your family all the best

Untitledsquatboulder · 29/10/2022 23:57

montysma1 · 29/10/2022 23:48

Surely to god they should let her take the chances with the operation? If she didnt make it through surgery and died on the table, surely thats a more humane way to go than what they have in mind?

The medics vow is "First do no harm". If they believe she would not survive surgery then they will not attempt it, it would be euthanasia. Besides which, perhaps that's not what the OP's mum wants.

Cherrysherbet · 29/10/2022 23:59

Im so sorry your Mum is in this situation. I really feel for you too.

My mum is elderly, and has been in a situation recently where they said they wouldn’t operate on an obstructed bowel due to her condition. I had no idea what to expect, and no one seemed to have the answers to my questions. I was just left to watch and wait, not knowing what I should be doing. Luckily she pulled through ( but is now under palliative care in a nursing home).

It’s a very confusing, scary situation for families. There isn’t enough care and support given to relatives.
Thinking if you and your Mum op 💐

Stopsnowing · 30/10/2022 00:00

I would ask them exactly why they mean about not surviving the operation and what the odds are of that.

Georgeskitchen · 30/10/2022 00:00

Palliative care means she will be made comfortable. I would say that in your mum's case they have done everything possible to help her, and not being miracle workers, they can do no more. Sometimes passing away in dignity is the way forward, rather than trying to prolong a life of pain and misery

Sorry for your pain and I hope your mum can find peace xx

OakTreex · 30/10/2022 00:03

I'm so sorry to hear about your mum.

In terms of a time frame I'm sorry to say that quite often it can take a lot longer than you expect and be quite a drawn out process (in my experience). But with palliative care she will be in the right hands and free of pain.

Sending you lots of love. Take care of yourself too and lean on your support network Flowers

BaffledShopper · 30/10/2022 00:03

I'm so sorry OP. When you see the doctor you can ask them "what is the prognosis?". (Basically it's like asking when will she die and what course the illness will take, but in different words.)

Clymene · 30/10/2022 00:06

They're not saying she will die on the operating table because they can't be bothered. COPD and general anaesthetic are a toxic mix.

It sounds like she's had a horrible time in steady decline and has moved to the next stage. Palliative care is kind and painless and you will be able to spend time with her. Much better that she can see and talk to you and will be made comfortable.

I'm so sorry. It's very hard to be in this situation.

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