DNR

[username8348]

My mum had her annual Dementia review with the GP recently and the Dr asked me if she would want CPR.

I said that she'd never discussed it or expressed a preference so yes resuscitate her if necessary.

The Dr said to discuss it with my siblings. I don't understand why. Can anyone enlighten me on why we need to discuss it please.

She doesn't have any medical conditions apart from the dementia.

Exactly... they want her to have CPR and you said No to CPR.

Hence they suggested you get other family opinions.

Do they understand the implications of this decision?

Do they know what the progression of dementia will look like?

I said yes to CPR because I didn't know my mum's preference. At the moment she's perfectly healthy and has just had a medical and is fine.

I need to dig out the note she wrote and see if she mentioned anything. She's more likely to have a stroke than a heart attack.

I am reading everything written here and will consult again with my siblings but before any decision is made, need to find out if she expressed a preference.

At the moment she's perfectly healthy and has just had a medical and is fine.

She isn't though, she has a degenerative disease. Her prognosis isn't good. I think if my nanna were to have had a heart attack before the dementia really took hold it would have been an absolute blessing. It's hard because your emotions tell you she is fine, but she really isn't.

All very interesting, but the person I was responding to was disputing that CPR is of benefit to anyone, of any age.

I also said that it is different for the elderly.

Maybe read posts properly before rushing in to disagree.

At the moment she's perfectly healthy and has just had a medical and is fine.

She isn't fine if she's got dementia!

I'm perfectly aware of her prognosis. We're talking about CPR not dementia. I meant she doesn't have heart problems and isn't ill in that way. I know she has dementia.

The thing is anything can happen to anyone at any time hence the CPR discussion
I'm 40 and I've made my wishes clear. No heart problems and not expecting anything to happen but it's a bit like writing a will - you kind of have to do it before anything goes wrong

I'm 55 and I don't want to be resuscitated. It's not about keeping someone alive. If your heart stops, you are not alive any more.

OP I can understand the shock and upset you feel on being asked this. I went through it with my father. It actually never came to it anyway. He went downhill in hospital anyway (to a large extent due to the poor care he had, but that’s another story) and the discussion became about stopping treatment. But at the time it really shook me when DNA was mentioned when he seemed so strong.

My mother was in hospital after a fall a couple of months ago. They mentioned DNA and it didn’t remotely bother me. I understood. My mum has a condition that will never get any better and very much limits her life, so it’s not à difficult decision.

My best friend died of cancer and I remember her being asked about DNA a couple of weeks before she died. She said “if anyone does bloody CPR to bring me back for more of this I’ll be livid at them!”

So she isn't fine, OP.

You and your siblings need to educate yourselves. Dementia is a condition which gradually, inexorably and inevitably leads to severe and extreme disability.

I'm perfectly aware of what dementia entails. My grandmother had it for twenty years and five of my relatives had it and now my mother has it.

Perhaps educate yourself on making assumptions about people.

Of course you need to discuss it with your siblings. You all need to be on the same page.

My mum (95) has got a DNR on her medical records, she has talked about thus with both my brother and myself, so if push comes to shove, both her kids are on the same page and will carry out her wishes.

It’s different, if the parent is suffering from dementia, but the whole family needs to agree treatment.

I feel for you, primarily because your GP hasn’t handled this situation at all well. Fundamentally, giving resuscitation anywhere but on the street is a medical decision. It’s not down to you and your siblings - A POA allows you to refuse treatment only, not specify what should be given. Your GP should have explained what they felt was the most appropriate course of action and acted on it, none of this wishy washy ‘go and chat to your family’. I have to say, I think that if you took 100 doctors in your GP’s position and asked them, >99 would have stated a DNACPR should be completed and hopefully acted on it. But you really have been left in limbo now, so I do feel really sorry for you.

A heart attack does not require CPR, she would receive full treatment for a heart attack which could be surgery, medication or a device like a pacemaker. FULL treatment if appropriate.

Cardiac arrest is not a heart attack. Treatment is ether CPR & medication to try to restart the heart, or let nature take its course and let them go.

They are asking you if you think your mum would want the CPR in the event of her heart stopping.

that is not how it works in the UK and the GP is absolutely correct to raise the question and advise discussing it with wider family.

deleted because I’m stupid and misread

The problem was the Dr could only speak pigeon English so I didn't really know what she was talking about.

She wanted to know if a form had been filled out regarding CPR. I said that as far as I knew there hadn't. She did ask my mum but my mum didn't understand what she meant.

The Dr then asked me if CPR should be performed, I said that I didn't know my mother's wishes but as far as I knew, yes.

Now I've read what CPR involves and the likelihood of recovery, I doubt my mum would want it as she was a healthcare professional.

However, when my grandad had a heart attack she gave him CPR. I spoke to my sister and she's insistent that she have it.

I know my mum wrote a letter about what she wants should she have dementia and need to dig that out to see if she's said anything.

Heart problems don't run on my mum's side, strokes do. My uncle has just had a stroke and he's fine. However the likelihood is that it will be the Drs decision not ours anyway.

The Dr then asked me if CPR should be performed, I said that I didn't know my mother's wishes but as far as I knew, yes

Did she explain to you what resuscitation involves, the statistical likelihood of success and what her opinion was? Because without these bits of information I really don’t blame you and your siblings gut reaction to say ‘resuscitate her’.

As I said, giving CPR in hospital is a medical decision. And just because it’s been left somewhat unanswered now doesn’t mean a doctor in the future wouldn’t implement a DNACPR if it was deemed appropriate at the time.

I wouldn’t spend hours worrying about it now. Enjoy your mother while she is well and the likelihood of cardiac arrest is low. But just make sure you and your family are aware that the situation regarding CPR is fluid and this conversation may well be revisited in the future if she was to become unwell, even with something else unconnected to the dementia. Best wishes to you all.

Does your sister fully understand what it entails during and after as per @Greybeardy 's post?

If your grandad was otherwise well, with no degenerative diseases, your Mum acted in his best interests performing CPR.

I agreed to a DNR with DMIL for two reasons. One was that the process is absolutely brutal and if she had survived she woukd have had no understanding of why her ribs were broken or wound face bedb able to cope with the pain.

The second is that she was a Christian and I'm not sure she would have been happy with the ideology behind resuscitation.

And to he honest I really bloody wish she had just had a heart attack and gone years before she did. She essentially had a loving death for around 5 years.

Did she explain to you what resuscitation involves, the statistical likelihood of success and what her opinion was?

No she said "CPR?" I didn't know what she meant as no one needed CPR. And she insisted "CPR?"

Then she said "Form. Heart attack. CPR?" I eventually realised she meant had a form been filled out for resuscitation.

Nothing was explained to me, and because I had no idea what my mum wanted, I said yes. My mum has a hearing problem and dementia so it's hardly surprising she didn't understand the question.

It’s not just the shocks and compressions to think about, if her heart had actually stopped beating and then was restarted then her brain would have had a period without oxygen, her brain is already vulnerable because of the dementia. Even if a heartbeat is restored then usually a stay in intensive care is needed. Intensive care is often not a very dementia friendly environment, bright lights, no day or night, lots of wires and noise. Then potentially several moves within the hospital to various wards. Quite potentially with her mental state worse than it is now. The rehab from a cardiac arrest is long and the chance of making it to hospital discharge low, and keeping the same quality of life she has also low. I think it’s worth thinking about these things and what’s right for your situation.

I'm reading this thread from a distance and can't help feeling for you op. A lot of posters are sharing their own harrowing stories, In quite a blunt and unquestioning way.

I can't help feeling you weren't ready to receive the information on this thread and I do genuinely mean that in a kind way. I thought I understood a lot about this but clearly don't.

I just wanted to say, it would be nice if posters perhaps remember op hasn't seen/ lived their experiences and possibly isn't ready or able to process this information in a way a lot of people want her to. It's a difficult heartbreaking thread to read and very informative. But a shocking read to someone who has never had this in depth conversation /investigation or experience.