Resuscitation

[cat64]

Well something else the care home visits have brought up is if mum collapsed would we want her resuscitated? How the heck do you make that decision?

Mum has always said she wont be here long after 70!!...she is now 77 and off to a care home soon. she's not my mum any more and is hardly eating......she really looks like she doesn't want to be in this world any more.

Would I be able to live with the the decision if i said don't resuscitate her .I have no idea??? Or hopefully if she flourishes in the home will I feel we must carry on for as long as possible....I dont know that either =[

have any of you found it hard to make the decision? which way have you all gone?? ....had a difficult relationship with my mum all my life and as the dementia makes her worse I wonder what it would be like if I wasn't sorting her out? Is that a bad thing to say?

 

[canary]

I had this discussion when mum first entered her CH and recently when she had pneumonia and it was all a bit touch and go.
It was easy for me as I knew mum wouldnt have wanted it, but I also found out that it wasnt like you see on Casualty - its all rather brutal (resulting in frequent broken ribs, bruising and much pain) and often doesnt work. It seemed much better to just let her pass away naturally if her heart gave up.

 

[fizzie]

I too didn't have too much heartache making the decision, it's never easy but I knew my Mum didn't want to be pulled and pushed around and then spend weeks in hospital or end up in care home so the DNAR was not really difficult. If you think back to the days when she said she wouldn't be here after she was 70 did she give you any indication of whether she want to to be resuscitated and would she want to be the person she is now? Its always hard making a decision on behalf of someone else unless you know in your heart what they would have wanted.

 

[Gwendy1]

My experience of this was a wee bit different. The second time dad had pneumonia in January, I asked the casualty doctor if they would be resuscitating dad if needed. My very strong feeling was that it would be wrong to do so, and when I broached the subject, she agreed immediately. He is frail, with rapidly advancing Alzheimer's and is now on puréed diet. I also remembered my dad being really upset years ago when his dad was resuscitated and died a few months later in pain from cancer.. I think you have to think what's best for your loved one, and think what they would want for themselves, then decide. It is a decision you need to feel is right in your heart. ❤️️

 

[LadyA]

My husband had to be ambulanced to hospital at the end of May last year because the nursing home couldn't reach me to ask if I wanted him to go or to be kept comfortable and let nature take its course. I had already told them I wouldn't want him hospitalised, but somehow the forms hadn't been done - I think up to then, he hadn't been ill enough for the GP to sign the form. Anyway, at the hospital, which was just across the road from the nursing home, they phoned me while I was on my way in to see how long I'd be. But it was rush hour, so it took 45 minutes for a journey I normally could do in 15 minutes. By then the hospital had had to resuscitate him. William's heart was strong, but he had aspiration pneumonia and had gone into respiratory arrest.
Speaking to the doctors at the hospital, given his condition, his prognosis and his age (84) they agreed that a DNR should be put on his file, and that a note that he should not be brought to the hospital again also be filed. He was terrified in the hospital - he couldn't understand where he was, where the familiar carers were, who all the strangers around him were. Antibiotics were no longer effective. He was sent back to the nursing home and was happy and comfortable until he died peacefully in his own bed, in his own room there in August.
Would add that after that last illness in May, William could only swallow very small amounts of pureed food, and had lost all interest in eating anyway. I was told at the hospital about peg feeding, but told the doctor that I wouldn't be in favour of trying it with him, because William was inclined to get agitated and fidgety, and would pull it out, leading to more problems - and really it would be postponing the inevitable, and I didn't feel it was in his best interest. The doctor agreed, and said that he just had to tell me about it anyway, but he didn't think it was an option.
When it comes to a DNR, I think you have to ask yourself: if I had to make the decision NOW, and I decided on resuscitation, am I doing it for mum's sake or for mine? Because a DNR is not a licence to euthanasia. A DNR only comes into play when the person has already died- their heart has just stopped or they've just stopped breathing - and the question arises whether to "bring them back" or not.

 

[Mollygoose]

Hi mother has dementia ! I took her to doctors because she wasn't eating ! The doctor said shall I put on the computer no resuuatating ! What I said you just said it was because she was constipated ! She answered well she is 90 so shall we fill it in now ! I said no way I will deal with that when I'm ready to not when you say so ! I was not amused take care

 

[angecmc]

As others have said when trying to resuscitate, damage can be done to ribs, lungs can be punctured and if your relative survived the resuscitation, there could be more damage to other vital organs which would not give a good quality of life. We have chosen with no hesitation to put a DNAR on mums notes, my mil was resuscitated when she went into cardiac arrest while suffering terminal cancer, my husband hadn't been asked about a DNAR, he was heartbroken that she was brought back to continue an even more painful few months of life. It is of course up to each individual, there will be many different opinions on the subject. I also tried to think about what my Mum would want when making that decision. It isn't a nice or easy decision to make xx

Ange

 

[Suzanna1969]

I didn't even know there was such a thing as a DNR until I joined this forum. Even then I didn't really think about putting anything in place for Mum and Dad because Mum is physically in fairly good nick, although her dementia is vascular and another stroke or a heart attack could occur at any time. Although Dad is physically frail he is mentally ok, with just minor cognitive impairment.

What pushed me to really consider this was watching a programme about emergency ambulance call outs. A crew was called to a care home where an 80 year old man with Alzheimer's had suffered a cardiac arrest. They tried to revive him and, as has been posted above, the procedure was brutal, even barbaric. They continued for 45 minutes. What on earth would they bring back after that length of time? And yet they have to do it for legal reasons. As I watched his poor body being put through this horrible ordeal all I could think was 'Please just let him go'. Imagining either of my parents being subjected to this brutality after what they've already been through was enough to make me broach the subject with my Dad (Mum doesn't have capacity) and he agreed that he didn't want that for himself or for Mum, so we spoke to the GP and she agreed to do the forms.

And no, it wasn't a bad thing to say. We all have dark thoughts and, considering what we as carers are going through, we are entitled to them and they don't make us bad people.

 

[Lylalu]

Well something else the care home visits have brought up is if mum collapsed would we want her resuscitated? How the heck do you make that decision?

Mum has always said she wont be here long after 70!!...she is now 77 and off to a care home soon. she's not my mum any more and is hardly eating......she really looks like she doesn't want to be in this world any more.

Would I be able to live with the the decision if i said don't resuscitate her .I have no idea??? Or hopefully if she flourishes in the home will I feel we must carry on for as long as possible....I dont know that either =[

have any of you found it hard to make the decision? which way have you all gone?? ....had a difficult relationship with my mum all my life and as the dementia makes her worse I wonder what it would be like if I wasn't sorting her out? Is that a bad thing to say?

I was faced with the same question a few weeks ago. I like you immediately thought "what on earth........" And said yes of course I want you to resuscitate both my parents! I stewed over this thinking how dare they ask, what did they think I would say?
A week or so later my mum was admitted to hospital from her care home. She had a fit and they wanted her checked out. The hospital said this was part of the Alzheimer's and then asked me the same question. I said "I've said yes already to the care home, why am I being asked this?" The doctor then explained that what this actually meant was they would not use cpr on someone. They would use other things but cpr would not be used. She said it didn't often work with someone of my mums age (75) with dementia and can cause more damage and be very stressful. After I listened to her I understood and have said no for both my parents. Talk to your mums doctor about this to put your mind at rest. They will tell you exactly what it means. I thought saying no meant they wouldn't treat my parents for anything and would just let them die but that is not right.
I hope this helps you a little. It's a long hard road we are on at the moment

 

[Witzend]

To me it came down to a couple of questions: was my mother enjoying life, even a little? And if I'd been able to ask her former self whether she'd want her life as she was then, prolonged, what would she say?
She wasn't enjoying life at all, she was in a permanent fog of advanced dementia, incontinent, and hadn't known any of her family for some time. And I knew 100% what her former self would have replied - 'For God's sake, just let me go.'

So for me there was no hesitation when her care home asked the question. In the event, it never arose, but I would not have felt it at all wrong if it had, and we had let her go. She was in such a pitiful state during her last few years, that I think it would have been positively cruel to force her to go on.

 

[Olivia15]

Hi Cat64,

I definitely don't think you're alone in finding it hard to make this decision - it's a massive one to make emotionally!

My mum's been diagnosed with early onset for the past 5 years and as her only next of kin I had to make the choice on whether she ought to be resuscitated or not and honestly it was the hardest decision I've made to date.

In the end, I decided to go for do not resuscitate as I know that were my mum in a condition to need that to happen, she wouldn't want to go on. Sometimes I still wonder if it was the right choice but I have to think about what I know my mum would want.

I wish you all the best and please remember you're not alone x

 

[whileaway]

Well something else the care home visits have brought up is if mum collapsed would we want her resuscitated? How the heck do you make that decision?

I tried horribly to get my Parent's LPA in Health and Welfare accomplished, and horribly is the operative word. My father has dementia and is 95, my mother's 91, and very intelligent, but maddeningly imaginative and evasive. I blew it! Even though we had Age UK come and bring the forms and fill out the attorneys and the certificate holder, and the donor of course, and mailed them in with full instructions and just the slots for signatures, I overlooked the question about resuscitation,( who decides?), which is supposed to be completed first! (section 5).
I am sure it was a Freudian Slip, that I couldn't ask my Mum to confront the question.
I think she's dreading The Liverpool Track, in which the elderly are let die.

It might have something to do with being extremely religious. She might think the suffering is there for a reason.

At any rate, I still can't make her talk about it, although I tried. How does one do this? I weep every day about it all. I need to do a lot of research and talk to people about what they know.
About the LPA, I am still boggled, having downloaded the forms several times, mostly getting something wrong, (the Age UK lady says no double-sided pages!) massive paper jams, not knowing who will witness. Now I'm letting my mother take the lead, as I bungled the last and embarrassed some friends and neighbors, trying to co-opt them to witness, in the process.

 

[LadyA]

I'm at work, so sorry for the brevity. Just to be clear. Resuscitation is actually "bringing the person back " - re-starting the heart or re-starting their breathing. In other words, their heart has stopped. Resuscitation in the elderly can be brutal and cause injury. I wouldn't want it.

 

[Jane05]

Jane05

My mother who is 85 and has early stages of alz has already told me she dosnt want to be resusitated but as at the moment she is self caring and lives in her own home any advise on how she (with my assistance) goes about putting this.on record and where would be much appreciated. . Is their such a thing as a DNR card she could carry about with her.

 

[Saffie]

Your mother's GP should have the Do Not Resuscitate - DNR form. It's also known as the purple form. Once it is completed it will be on her records.
I hope this helps.

 

[chrisdee]

Dear Cat, I think this seems difficult for you as its come up suddenly when other things are happening. Plus the difficult relationship you mention could perhaps be muddying the waters? Why not put a note on your calendar and leave this for a week or two once Mum has moved.
My Mum 'went down' fairly quickly after a fall and a hip op, she was 91. We had the difficult decision regarding end of life care [ie withdrawal of meds], rather different to DNAR but amounts to the same thing. As others have said, our role is to do what they would have wanted for themselves. In my time on this site, I have not come across a family carer who would want to prolong suffering. I wrote to our family doctor confirming that I felt that Mum had suffered enough. In early stage Mum had certainly said 'I hope you never get this, its awful'. that was good enough for us.

 

[Hill Man]

Resuscitation conversations can often be difficult. I found the following helpful to me

1) Almost everyone who dies peacefully, dies because their heart stops beating. We recognise that it would be totally crazy to try an resurrect everyone who dies. As others have said resuscitation is a brutal proceedure - sometimes we just need to recognise the end has come

2) Very few folk over the age of 80 survive resuscitation - I looked into the figures - its about 3% at best

3) If it helps, remember that in the UK the decision not to resuscitate is actually made by the doctor. As relatives we are really being asked whether we agree with that decision. Most doctors will make attempts at resuscitation if they feel the relatives would give them a hard time for not doing so but strictly speaking they should decide for themselves whether its in the patients interests to attempt it

4) Theres a web site talkcpr.wales which has lots of useful videos


For people who have made up their mind about not having resus for themselves first talk to your GP - they will flag you up with the ambulance service who are the most likely people to treat you at home second check out the "message in a bottle" scheme run by the lions clubs - its a great way of storing medical info in an obvious place - your fridge!