DNR

Second everything in this post - well worded and informative

I would talk to sibs and then just tell docs your mum has a good quality of life and no reason to put dnr in place now. You are best placed to advocate.

Early stages though are different

No, @Notsandwiches that's not a good way to approach this at all.

Early stage dementia invariably leads to late stage dementia.

Resuscitation in the early stage would be unbearably cruel. The dementia is always going to get worse.

Having supported my mum through alzheimer's, I am pleased we put in place a DNR. The last 4 years of her life were dreadful and I wouldn't want to be resuscitated to endure more of it if it was me. Early stages though are different.

I would never, ever want to be resuscitated. It is brutal (& almost certainly won't work anyway). Personally, I think every adult should automatically be DNR, but I would certainly ensure it was clearly noted for anyone who was close to me and couldn't decide for themselves.

In the kindest way OP, if your mum was to suffer a cardiac arrest to the point where CPR was needed your mum may be able to survive it, but she would not recover from it.

CPR is bone breakingly painful, can cause a host of infections and long term complications. The best you could hope for is a extended stay in hospital, her dementia systems would take a sharp drop which is very common even after a simple bout of being unwell. She could be scared and in pain while not being bale to follow what is happening to her.

Yes, you could extend her life past her natural end, but she will not have anywhere near the quality of life she has now. You would be extending the suffering.

Please talk to your family and the Doctor.

My own mum has Alzheimer's and COPD , we have discussed it at length with her medical team and she has a RESPECT form in place, that shows CRP is not to be attempted, she is to be allowed to die, peacefully at home as i know that even being in hospital with the strangers and machines would be terrifying for her.
Its not to say we are washing our hands of her, she will be given any treatment to help with pain and symptoms, but we will not be medially extending her life.

My mum would not want to be in a care home, with no memory of her family, and unable to walk, swallow or speak, and that is what Alzheimer's will eventually do to her. I can only hope that her body will give out before her mind goes completely. She is going to die, its only a matter of when, and i would rather she died as my mum, knowing how much she is loved.

the conversation with her doesn't have to be upsetting (and actually, if she does still have capacity for some decisions then the conversation should be with her). It can start off as a very general...'if you got really poorly would you want to go into hospital or would you prefer that the GP treated you at home' and take it from there. If there's no way on earth she'd want to go to hospital then that answers the question - CPR would be utterly futile without the full support of intensive care. This is how I started the conversation with my cognitively impaired granny, and when she caught us a bit by surprise a fortnight later, it was a huge relief to know that she wasn't going to be put through a completely futile resuscitation attempt and she died peacefully in bed. (to start the conversation I think invented a friend who's parent had become really sick and needed ICU and I think I said something like 'not sure I'd want all that for myself Granny, would do you think?...').

It may be worth asking the GP just how healthy she really is and perhaps if there's anything they can see now that's prompted them to raise the question at this point - it's not uncommon to not have a long list of diagnoses on paper, but to actually have knackered kidneys, evidence of heart disease, etc (and she clearly has a neurodegenerative condition). Is there anything else in the background that just hasn't been given a label yet (dementia is often a small vessel disease, and as well as there being small vessels in the brain that can become damaged, they're in all the other body systems too). As part of the normal ageing process we lose reserve, so even a perfectly 'healthy' octogenarian, for example, will be using every single nephron in their kidneys, myocyte in their heart, brain cell, etc. They function absolutely fine until they break their hip/get pneumonia and then the wheels fall off in some style. An average 50 or 60 year old will still have 'spare' cells they can lose to a major illness/insult before it becomes a big problem.

If someone has a very sudden cardiac arrest and receives immediate good quality CPR (from friends/family) and gets defibrillated quickly then their chance of surviving will often be relatively high. They will have accumulated some brain damage and other organ-system damage during the 'downtime' though even with good CPR, but if they have enough reserve that might not be a huge problem. They will require a stay in hospital (which is disorientating for patients with dementia at the best of times) and they will require invasive management which can be pretty unpleasant but it may be possible to recover to a reasonable quality of life though and is the right decision for some people.

If a cardiac arrest is the end result of 'whole body failure' (eg. due to an infection) then that is more likely to be unrecoverable and is a much bigger ordeal if they do survive it. Getting a pulse back is only the beginning and recovering to hospital discharge may be a much bigger effort for them. A more common outcome in this scenario is that they will survive the initial arrest but become adrenaline dependent. Every time the adrenaline wears off the heart stops again, but carrying on the adrenaline causes more damage to the other organs.

A last thought (that applies to all-comers), is that if someone does have a cardiac arrest the very best chance of survival comes after receiving bystander CPR (+/- defibrillation) before paramedics arrive. So if you/she/your siblings do agree that resuscitation is the right thing for her, then it's definitely worth whoever she lives with having done a basic life support course so they can confidently do CPR to give her the best chance of surviving reasonably in-tact (that really applies to everyone, not just people with older relatives).

Resuscitation isn't always the wrong thing for older folk, but it is absolutely nothing like what you see on the telly and it's really important for people to understand the implications of that decision, what the likely course would be if someone survives the initial insult, etc. It's probably worth going back to the GP once you/your mum/your siblings have spoken to each other and maybe finding out a bit more about what their thoughts are too (and possibly asking about a ReSPECT form or whatever local equivalent they use... which documents preferences about medical care including, but not limited to CPR).

But it's very unlikely that it would continue like that should be resuscitated. Resuscitation is stopping someone from dying their natural death. Particularly when they get to this age.
the likely outcome would be that your mum would be very unwell, maybe brain damaged, unable to enjoy anything, confused or maybe violent, bed bound and incontinent. For years.
I can't see how anyone couldnt think it was preferable for a quick death when the person is still relatively fit abd independent rather than the very protracted death many people now suffer.
I think of much modern medical practice as not extending life but prolonging death.

Perhaps try to understand what it involves and when it might be required and what it would achieve even if it works and how likely it is to succeed. If someone has a good quality of life and requires resus because of a relatively 'reversible' medical event then all the good. Footballers and defibs...

If someone has poor quality of life and needs resus because of cardiovascular or other damage that will remain after resus then the HCPs and patient are both being put through the grimmest of processes for an unlikely outcome that temporarily delays the return of the medical events that led to the crash in the first place - broken ribs and all that for little benefit.

I'm reminded of a probably apocryphal survey of US geriactic medics whose patients expect 'all stops to be pulled out' and who expect to be sued by the families of the deceased if they don't. Most medics don't want a medicalised death nor repeated resus attempts.

It’d be a definite No for me. I had POA for an elderly relative and in my experience it’s really only to make relatives feel like they've got some input. Just a cursory nod that you agree with what the DRs decide. So if it came to it, they would make the call not family in my experience.

My friend survived a heart attack a couple of years ago. She was late 50’s, Her husband was with her, he’s 6’5 big strong chap. Under instruction from the 999 people he performed chest compressions while a neighbour ran for the village defibrillator. He says it was brutal how hard they were telling him to push. He felt her ribs crack.
She did recover, but she had 3 weeks incubated in intensive care. It was a good 6mths before she was ‘back to normal’ and she still has lung issues. Thankfully doesn’t seem to have any brain issues despite being without oxygen for so long.
It’s not something I’d want an elderly lady put through.

DNR is not writing her off completely. She will still receive other medical treatment. It's literally about re starting the heart if it stops. Please don't do it to your mum.

I would never agree to resuscitation for an elderly person. Especially one with dementia. It's brutal either way a low chance of a good outcome.

Best case scenario she'd wake up ventilated in ITU. For somebody with dementia they will likely never leave hospital. She would die after weeks in hospital, it would be horrendous, terrifying and totally undignified for her.

There comes a time when it's kinder to let nature take its course and allow someone to die rather than intervening (in a brutal way) to try and keep them alive. For me death would definitely be preferable to the ongoing and often horrific decline of dementia.

Have a look on the health opa form and see if she mentions it there, resuscitation only really works in a hospital setting depending on the cause, it's a medical decision but family are consulted out of courtesy and the patients wishes.

I'd urge you to speak with a medical professional about the effects of resucitation on an 88 year old with dementia who can't walk unaided and is catheterised.

I think you have a rose tinted view of the process.

The amount of brain damage she'll have if the resucitation is successful will mean she will be nothing like how she is now. And the physical damage to a frailer body will also be pretty brutal.

Dementia gets worse, not better, I'd want my mum to be long gone before the end stages come around.

It's great that your mum has a good quality of life and is physically healthy now. But that's not really the point when it comes to DNR.

Resuscitation is only in question if the heart stops. If the heart stops, the person is no longer physically healthy. It will have stopped beating for a reason.

The heart can be re-started, but there's a long and painful recovery period where a person needs to be able to participate in the process of rehabilitation.

In someone with dementia, they will not ever get back to the place where something stopped their heart. A brain with dementia is already shrinking, and any time without oxygen during resuscitation will hasten the progression of the disease.

So the question isn't "does my mum have a good quality of life now?". If something causes her heart to stop, do you try everything to get her back knowing that a) there will be pain, and b) she won't have the same quality of life that she had before something made her heart stop?

Hickory - I don't think you are being selfish, but perhaps naive to the procedure and likely outcome of CPR. One thing to bear in mind though is doctors will make what they feel is the right decision for your mum at the time regardless of your wishes (although these will be taken into account).

She's great physically and can take care of her needs, she also knows how to get places but finds holding a conversation difficult

That's what she's like now, OP.
I promise you that in two years, she will have deteriorated very severely.

Dementia is a terrible disease which causes patients to lose the ability to walk, talk coherently, feed themselves, wash themselves, control their bowels and bladder.

It also causes profound personality changes.

I urge you to find out more about end stage dementia, and what it looks like.

Dementia is relentless. It always, always gets much, much worse.

Definitely try and find that paperwork OP, does her solicitor have a copy? If she has sorted out POA and written instructions I strongly suspect t her wishes regarding cpr are there. Make sure you have a copy of the POA as in acute incidences hospitals will need to see it quickly so you can make decisions regarding treatment.

I was asked if my Mum who has dementia would want to have CPR if necessary and I said definitely yes, because she has a good quality of life.

I did think about her suffering oxygen deprivation and possible brain damage but assumed that this was quite rare. I never considered the longer term injuries that can occur following CPR such as broken ribs, or other trauma as I didn't really think about them. As a lay person you don't really know this do you??

I've also agreed to drugs to help with the dementia so her side effects aren't as bad. She lives in a care home, is warm, fed and watered and mixes with others and does activities six days a week like baking, making decorations, making lemonade, etc, etc. I don't feel like her life is over by any means. Maybe I am being selfish, I don't know. She is 88 and she can't remember what she's done that day or eaten but she knows the names of me, my partner and the dog and is capable of having a conversation with four or five sentences and recognises the other dementia residents and also the faces of the staff who she sees reguarly. She can ask me how someone she knows and what I am having for tea. She can't walk unaided without a frame and isn't encouraged to and she is catheter dependant but doesn't seem worried by any of this, but I know that's part of dementia, lack of awareness. How can someone judge the value of a life? I really don't know the answer to this.

When your mum's dementia reaches the later stages, you'll see that an earlier, peaceful death would have been preferable.

I would never resuscitate someone who had a degenerative and terminal brain disease.

Quite apart from that, CPR is really brutal, and very unlikely to succeed anyway.

Don't put your mum through this. I'm surprised that your doctor didn't advise against it.

You and I can tolerate painful procedures for the promise of future benefit. I’m not sure this is true for someone with severe cognitive impairment.

She won’t be able to take care of her physical needs if she has a cardiac arrest and ends up with broken ribs and a punctured lung though. Added to which the complications from potential pneumonia and then further brain damage.

I do know it’s upsetting to think like that OP, but the fact is that she’s enjoying her life now. But you know that she’s declining. If it gets to the point that she has a cardiac arrest then the chances she is already going to be in poor health, it’s not likely to be the case that she’ll keel over on the tennis court or during a coffee morning.

My grandad was resuscitated, it made his dementia worse. He can't remember anyone or anything or do anything he sits in front of the TV all day everyday. My grandma and grandad agreed on a DNR but my grandma changed her mind. Now she's struggling to care for him but she says she would rather have him here then not have him at all because she can't imagine sitting on her own. He has no quality of life and he was purely brought back because of my grandma. I love my grandma to pieces and I understand her emotions she just loves him so much and can't imagine life without him but I know my grandad wouldn't want to be alive like this. Everyone's circumstances are different, your mum sounds very active and still has a good quality of life. However when I've been to the doctors with my gran for years she lied to them about how bad my grandad was and a lot of people do this, and like I said a lack of oxygen can make dementia worse if they bring your mum back she might not be the same person so it's why the doctor will have asked. It's very hard to put your emotions aside and make decisions like this, it's not an easy thing ❤️