Potentially upsetting question about death.

[Chocchops72]

I’m not sure how to word this so I’m just going to come out with it.

how do frail, elderly people in nursing homes eventually die? When every ‘natural’ cause of death is denied to them?

My MIL is 85, aged advanced Parkinson’s, dementia and osteoporosis. She is immobile, very frail, doubly incontinent. Any time she is ill, a dr is called - most recently for a chest infection where she was prescribed antibiotics. Is this what happens now? She is just kept alive (existing) at all costs?

i don’t have much experience of the end of life, I don’t know how it happens.

You'll know if she's coming to the end because she will not be able to eat, if she has dementia. At that stage, they tend to just keep them hydrated but not feed them because they have lost the function to eat. Its a HORRIBLE disease, having seen my grandmother go through it. But slow death usually happens when they go off food and only want very cold things like icecream or ice cold water.

Sorry for all this though. It is horrible

I think you can request for them not to be treated I know my dad did that with my grandma

Sorry just to add they were her advocate as such legally as she had dementia and they were allowed to make decisions for her

Have a word with the home about end of life care.

Was going to say.....

You probably can have a DNR if you have legal powers.

I agree with you, it's an enormous moral problem. Personally I wouldn't keep a pet alive like that let alone a beloved family member. I believe your husband as next of kin can withdraw treatment and it would be the kindest thing

Surely antibiotics for a chest infection would be palliative care, not keeping her alive. The chest infection wouldn’t be her demise so antibiotics given to make her comfortable?

The whole point of going into a care home is to be kept comfortable until the end of your day's...eventually your body will just slowly loose motivation and start to shut down.

Thank you all. It’s interesting to read about refusing to eat towards the end, and presumably the care staff will be able to recognise that when it happens.

there’s no chance of getting any DNR or such like in place, or even asking about it at the home. FIL is completely in denial of her situation. He’s still trying to come up with ideas to ‘bring her out of herself’ 🙄 and reacts strongly against any discussion about death. He would be outraged if this was discussed with him. He has POA.

i can’t believe anyone would look at her and want to prolong this existence in any way. I think he’s being very selfish.

My dad died in October with vascular dementia and various other complications. I'd given the nursing home a steer that he should just be kept comfortable and not taken to hospital for treatment. He'd been there 4 years so they knew him very well. They alerted me that he was dying and I had a week where I was able to spend a lot of time with him. He spoke occasionally and smiled in response to music. They offered him food and drink all week and he took some occasionally and briefly rallied. Then they called to say come now and he died that morning. The GP had seen him during the week and prescribed some meds to be used if he was in pain but these were not required. It was a peaceful death.

There comes a stage where all medical treatment is withdrawn and they are just kept comfortable and pain free.

My grandmother lost the ability to eat and drink so they began what they call mouth care. This is where they keep the lips moist, and also use a swab/dropper/spray to put a gel/water inside the mouth. I think ice chips can also be used just to keep the mouth moist.

I'm not sure who makes the decision to withdraw treatment but it should be part of the decision making in a patients end of life care plan.

It's not a case of trying to feed a toddler and them refusing by turning their head. She will start choking/gagging/vomiting.

If FIL is next of kin, unfortunately it is his decision.

The most common cause of death in PD is aspiration pneumonia, they must have judged although she is very frail, she is well enough to have a chance of avoiding this is by keeping on top of respiratory health. Double incontinence is normal in pd and not a sign the end is near.
Is there a local hospice you could refer yourself to so you could have you questions answered by an expert?

@parsniiips ...my grandmother had "mouth care" at the end and she carried on like that for a month. Her tenacity lasted til the end :)

Medical staff can decide that attempting resuscitation in the event of cardiac arrest would not be in her best interests. That decision has to be discussed with “family” your FIL with POA in this case. The appropriate paperwork can then be filled in - he does not have to agree he just needs to be informed. More difficult is the decision on deciding “ceilings of care” such as should she be admitted to hospital for intravenous antibiotics if the tablets\liquids do not work. Clearly it would be inappropriate to offer her invasive ventilation on intensive care for example.
The process tends to be continued decline as less food taken in, less muscles used so weight lost, muscle strength including respiratory muscles weaken and chest infections more likely. Previous poster correct pneumonia often the last event.

Did your MIL express her wishes prior to her admission ? A horrible situation for you all.

My aunt had dementia but ‘lived’ 3 years totally bedbound, not able to speak, doubly incontinent, had no idea who anyone was etc.

She never lost the ability to swallow and would open her mouth to accept food and drink which kept her well hydrated and fed. She never lost any weight etc.

Her skin broke down towards the end and she would have to be bandaged up as she leaked fluid. It was pitiful.

In the end she died very quickly due to organ failure. She ate her (large) tea at 5pm and died at midnight after her breathing suddenly went odd. Doctor was called and despite being given a dose of morphine (twice) and us being told that she’d pass in the next 15 minutes it took several hours.

She fought it until the end. It can take many years unfortunately

this may help a little. Language is important too, we experienced the phrase ‘they’re seriously ill’ rather than ‘they’re dying’ which I don’t think helps. The only thing I would change in relation to my MIL’s death were the battles over trying to get her to eat something. Her body was shutting down, she didn’t want to/couldn’t eat despite telling us what she would like for dinner and after preparing what was requested she wouldn’t touch it. No one told us that she was dying when with hindsight she clearly was.

Does your FIL want her to go to hospital to be treat with IV antibiotics etc or does he want to keep her comfortable in the nursing home??
Does she have an emergency health care plan?
Does your father in law understand the implications of not putting a DNACPR in place? How brutal CPR is and if they do get her back it would probably be for a short (very painful from cracked ribs etc) time.
It sounds more of a FIL problem.
Oral antibiotics in a care home can be part of palliative care as signs of a chest infection can make people uncomfortable and antibiotics can relieve those symptoms.

It sounds as though your MILs GP needs a conversation with FIL and yous for support re her best interests.
Normally with Parkinson's and dementia the person finds swallowing difficult and food/fluids can go into the lungs. Eventually they can't swallow anything or pneumonia makes them deteriorate. It's so sad when you see your loved ones suffering xx

It is so awful. I really feel for you, and have seen this happen with my own mum. In that case we DC fought to move her to a hospice and she was allowed to die in peace.

When the next of kin want everything done to keep her going, what can you do? It's not kind, it's not what we'd allow to happen to our pets, it's a half existence at best. Very sad.

I want a medical POA set up and absolutely don't want this to happen to me.

My grandad recently passed away in a care home. He fought off various infections for weeks in hospital before being well enough to be discharged to the home. He had stage 4 Kidney Disease, plus Dementia and delirium.

He was in the care home several weeks, ambulances were called several times as he had fell or was unwell with another infection. Eventually he slipped away while sat in a chair in the communal area. Death certificate is set to read 'frailty and old age.' It's very sad but I am glad he's no longer battling with the delirium which was causing him great distress.

Warning: this us not a nice post. I work in a hospital and i have strong views about this subject.

If your FIL has POA it is his decision and you just need to come to terms with it. He does love her, quite clearly and it does sound that she is unlikely to be actively suffering.

However, just being next of kin without POA, it is NOT your decision, as I unfortunately know to my cost as my DM never gave us POA for health and it's now too late. It is the persons decision if they can make it (which is of course right) but if she has no mental capacity it's her doctor's decision what would be in her best interests, though they should consult NOK to find out what her wishes were.

DNACPR is for when someone is already dead - their heart has stopped. It is the smallest thing that should be in place in this situation. However, not having one in your MIL's condition doesn't make much difference, as resuscitation is incredibly unlikely to do anything - possibly might prolong her death for a few days.

At some point, as she is being actively treated, she will end up going to hospital with a major infection. At that point she probably won't be alert enough to swallow her Parkinsons medication, which will make her symptoms much worse. She will probably be given IV antibiotics and medication via a patch, on a crazily busy noisy ward. If she is admitted at the moment she will probably catch Covid or flu or both. This may happen multiple times with her losing a bit of strength each time. At some point the antibiotics simply won't be able to fight the infection and she will deteriorate, and the doctors will decide to withdraw treatment.

The last time my mother had a chest infection and nearly died, we finally managed to get 'antibiotics as needed' crossed off her drugs chart by the GP, so that the nursing home staff can't just give them to her. We have been fighting for that for over a year. They nearly sent her to hospital and I literally screamed and cried on the phone to stop it. I have no idea why medicine is like this. Her life is worth nothing to her but she is forced to continue it.

It’s always been a FIL problem, I have previous posts on here about that 🙄

i think I’m struggling as well because it’s not my family. If I was DH or SIL and it was my mum, I would be actively having these conversations with the Dr / nurses / home and my dad. Their family just don’t talk openly in the same way, and DH isn’t around as much so he doesn’t want to upset everyone during our visits.

thank you for the info, it’s definitely giving me a clearer idea what to expect. I hasn’t realised the difference between giving oral abs for comfort rather than intravenous abs in hospital.

so as long as she is accepting food, and able to swallow, that means she still has some kind of drive to be alive? And we should be keeping her comfortable as long as that is the case?

I found Atul Gawande's book "on being mortal" helpful - got it from the library. It talks a lot about quality of life and what that means in the context of modern medicine where people live a lot longer than they would have once been able to.

I think he’s being very selfish. Not selfish, he can’t help his perception. He’s doing what he thinks is right for her.

I want a medical POA set up and absolutely don't want this to happen to me. As a matter of curiosity, is there any reason why you haven’t already set

.. set this up