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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:
IncessantNameChanger · 30/10/2022 00:06

I would ask her if she wants to take her risk on the operating table and go from there. Dhs uncle had an aortic rupture at 87 and they tried to operate as the family said how was full of life. It didn't work but it was a certain death without trying.

I really am so very sorry for you both. Life can be so cruel 💔

Iheartmysmart · 30/10/2022 00:08

Hi OP. I’m sorry to hear about your mum. I’ve just been through this very situation with my dad. He was taken into hospital earlier in the week suffering from complications from advanced COPD. He was given antibiotics, oxygen and pain relief but nothing worked. He moved onto palliative care early on Thursday morning and died at 11.15am that day without ever really regaining consciousness. He was in no pain and died peacefully with his family around him. 💐

PerrinAybara · 30/10/2022 00:09

Sorry to hear that you and your mum are going through this.

One suggestion I read about for asking about timeframes and prognosis is to ask 'would you be surprised if <person> was still alive in x days/weeks/months?'

Howamihere · 30/10/2022 00:15

Oh, I’m so very sorry. This is something I can’t fathom with the nhs - happy to pay out for nose/boob jobs but not to attempt to save a life. My step father was left to die because they felt he’d had his time, it’s euthanasia by nhs. The nhs is a fabulous thing and ideology but has lost its way - this would not be acceptable in most other 1st world Countries….but it is very sadly yet another example of this Country’s slide down the rankings. Do ask questions op, at least you will know you have done so and done the best for your Mum. I’m so sorry you find yourself in this situation 💐.

nojust · 30/10/2022 00:23

A similar thing happened to my fil. He'd be deteriorating for a year following a stroke, although he was still fully aware of what was going on. After numerous infections and hospital visits the doctors basically said there was nothing more they could do for him. Feeding was stopped which sounds horrific but he was heavily sedated and we were given a leaflet about end of life which explained that due to the sedation and generally being very ill he wouldn't feel any hunger or thirst. It took about a week for him to pass away. It was very peaceful in the end.

Lemonlady22 · 30/10/2022 00:24

ivykaty44 · 29/10/2022 23:51

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

They can’t, it will be the same as euthanasia. The blood clot in her leg must be quite large and blocking any blood reaching her foot/lower limb. Have they told you where the actual clot is? Is she still on the blood thinners? Ask doctor at next review. Hope they are keeping your mum comfortable

mawik · 30/10/2022 00:28

I am so sorry to read this.
Do you know if your mum has discussed with the medics regarding a respect form and DNAR?
my father passed away 10 days ago, luckily very peacefully and pain free at home. He had both above in place, but we didn’t get as far as needing the anticipatory meds.
please speak with your mums medical team xx

Clymene · 30/10/2022 00:41

Howamihere · 30/10/2022 00:15

Oh, I’m so very sorry. This is something I can’t fathom with the nhs - happy to pay out for nose/boob jobs but not to attempt to save a life. My step father was left to die because they felt he’d had his time, it’s euthanasia by nhs. The nhs is a fabulous thing and ideology but has lost its way - this would not be acceptable in most other 1st world Countries….but it is very sadly yet another example of this Country’s slide down the rankings. Do ask questions op, at least you will know you have done so and done the best for your Mum. I’m so sorry you find yourself in this situation 💐.

This is just complete bollocks.

The OP's mum will die if they operate. That's euthanasia. Which is why they don't want to operate.

Weenurse · 30/10/2022 00:42

I am so sorry you are going through this.
Unfortunately theatre time and teams are limited, as are ICU beds.
They will not operate on someone who a - probably won’t survive, and b- would need and ICU bed if they did survive the surgery. The probability of getting someone with severe COPD to breath on their own after that sort of anaesthetic, is extremely low. She would then die with breathing tubes in a busy ICU vs, quietly and comfortably surrounded by family and friends without the surgery.
The severe COPD would mean probable death by anaesthetic, which someone else has already pointed out, is euthanasia.
The palliative care option is the kindest one.
Are there any final goodbyes or gifts she wants to make?
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.

BlodynGwyn · 30/10/2022 00:48

I had my ankle totally replaced and didn't have general anesthesia for it. I stayed awake most of the time. I had some sort of epidural and a nerve block in my leg. It was much better than GA. Ask for this.

NoBackchatHere · 30/10/2022 00:50

The NHS is at breaking point and my experience is that the elderly are being failed at every turn. This feels wrong to me and another cost-saving exercise. Write to your MP and document what you’ve said here.

MyOnlyDays · 30/10/2022 01:13

I'm so sorry for your Mum and for you and your family. You Mum sounds very strong.

My elderly Dad died in hospital earlier this year and was calm before the heavy palliative care drugs kicked him. He was sick and had known he was going to die for a while. I think he was at peace with things. He didn't want many visitors. He didn't want any fuss. Maybe it looked like we were very passive but it was the right thing for him and for our family. They gave him lots and lots of drugs and he didn't take long to die at all.

It gave us all a huge amount of comfort that he had been looked after so kindly.

Following his death we were also surprised at how easy it was to sort of all the legal and administrative side of things.

You always hear of the bad stories but I like to think there are lots of good stories too.

sweetgingercat · 30/10/2022 01:17

My mum went onto palliative care after she suddenly stopped eating and drinking and got a kidney infection. She was very clear that she wanted to die.

The priority was making sure she was comfortable. The hospital was a noisy and difficult place and we were able to arrange carers at home, so we got her out of hospital and back to her home while she was still well enough to travel. If that is not possible then a hospice is generally much better than a hospital, the doctors and nurses are more experienced and your mother will have a calmer, more restful and more meaningful end of life experience.

One of the carers who came was an end of life specialist and knew what to do with the syringe drivers and drugs we were given. In the end my mum didn't need them, she stopped eating slowly and died six weeks later. She had four women with her when she died, a very old friend, two carers and a priest and I think it was a lovely moment.

I think everyone is different and even doctors cannot easily say when someone is going to die, but there are signs that death is approaching in the last few days and hours, such as darkened skin on hands and feet. You will have lots of questions and if you can find someone medically experienced to help you through these days, it will be very helpful as you will have many questions. Good luck with it, be gentle on yourself, it's one of life's hardest moments.

McHelenz · 30/10/2022 01:18

This happened to my great aunt, however they did amputate the leg I think with a spinal as opposed to a general.

I mean I don't know what is more horrible to be honest.

ZeldaWillTellYourFortune · 30/10/2022 01:18

I'm so sorry you are going through this and I understand (through firsthand experience) the horrible shock when they say nothing can be done.

You can agitate for another opinion but I am afraid as others have said that the COPD precludes anesthesia. (though for an operation on the lower leg -- could it not be done under local numbing and sedation? Ask.)

Will be thinking of you and wishing you peace, come what may. It's horrible to lose a mother, no two ways about it, but always remember that she wants you to have a happy life.

Floralnomad · 30/10/2022 01:19

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.

You have my sympathy as this is exactly where we ended up with my mum , she had multiple perforations of the bowel but the surgeons deemed her too ill to operate on . IMO , which I told them , if they’d actually treated her properly in the few months prior to this event she would have been in better condition . They couldn’t or rather wouldn’t explain to me why it wasn’t worth a try at saving her when just a few months previously she had had a relatively good quality of life . Fortunately we were able to take her home and she did have a fairly peaceful death . I hope your mum has a comfortable death @debbiedesperado 💐

caringcarer · 30/10/2022 01:21

Just so sorry you are both going through this. My fil had severe COPD and died during lockdown by not being seen by any medics. He did not have Covid as did multiple tests. Ambulances at the time only focused upon Covid patients. Mil was told if they took him to hospital he would catch Covid. His best chance was antibiotics at home. He could not breathe and died 3 days later. Being with your Mum is important. You might need to get leave from work. Talk to her. Find if she wants to see anyone or has instructions about anything. Make sure you tell staff if she is in pain.

Babyroobs · 30/10/2022 01:25

Weenurse · 30/10/2022 00:42

I am so sorry you are going through this.
Unfortunately theatre time and teams are limited, as are ICU beds.
They will not operate on someone who a - probably won’t survive, and b- would need and ICU bed if they did survive the surgery. The probability of getting someone with severe COPD to breath on their own after that sort of anaesthetic, is extremely low. She would then die with breathing tubes in a busy ICU vs, quietly and comfortably surrounded by family and friends without the surgery.
The severe COPD would mean probable death by anaesthetic, which someone else has already pointed out, is euthanasia.
The palliative care option is the kindest one.
Are there any final goodbyes or gifts she wants to make?
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.

This exactly.

PeloFondo · 30/10/2022 01:25

My mum was end of life but different because she had early onset dementia
She got pneumonia, the antibiotics didn't work and progressed to sepsis and we stopped treatment
She was on the end of life care drugs, I can't remember what they were but basically anti sickness, pain relief, one to dry up secretions and one if she got distressed. She died peacefully with me there, her breathing was noisy but she was totally unaware. Despite the dementia it was a "good" death, she just sort of stopped, there was no distress

LittlePearl · 30/10/2022 01:33

Sorry to hear this OP, that's tough.

My 89 year old aunt was told that she had a short time to live unless she had an amputation, which they didn't recommend. She decided against and died three weeks later which was much quicker than I'd expected and was a shock, to be honest.

It was during lockdown and getting good pain relief for her was a battle which made it distressing for her and for us (she was in a care home) but it sounds as though that shouldn't be a problem for your mother if she's been referred for palliative care.

Though it was upsetting at the time I look back now and feel grateful that it wasn't long and drawn out (as it was for my mum who died of vascular dementia).

💐

oakleaffy · 30/10/2022 01:36

@debbiedesperado .It seems shocking that they won't risk the operation...even if she 'Dies' under the anaesthetic, as some very sick animals do, it would be more humane than letting sepsis or similar take her.
Animals have it easier than humans do.
I'm really sorry. I hope your mum has an easy passing, and that she doesn't suffer. It's so wrong :(

GlassDeli · 30/10/2022 01:45

In what way is the op 'euthanasia'? The purpose would not be to end a life, even if that were the result.

Lentil63 · 30/10/2022 01:46

Have you been able to have a good chat with the doctors. If they think your dear mum will likely die as a result of the amputation but will otherwise not survive I don’t understand why an amputation isn’t worth attempting.
what a terrible time for you, I’m so sorry you’re having to face this.

oakleaffy · 30/10/2022 01:51

@debbiedesperado Is there any way your lovely Mum can go to a Hospice?
They are extremely good {They tend to be gentle, quiet places, and what hospices seem extremely skilled at is getting people's pain relief and nausea under control.
It's a very different vibe to a busy noisy hospital, and Family can be there of course.

Best wishes..It's incredibly difficult when faced with the loss of a parent.

oakleaffy · 30/10/2022 01:56

GlassDeli · 30/10/2022 01:45

In what way is the op 'euthanasia'? The purpose would not be to end a life, even if that were the result.

I'm NOT medically trained, but a general anaesthetic is quite hard on a person's body..If they think someone won't survive the anaesthetic due to lung disease, it could be seen as tantamount to euthanasia..Euthanasia isn't legal in UK for humans.