Right place to ask? End of life "chat" with nursing home

[Brogues]

Hope this is the right place to ask, my mum is in the later but NOT end stages of dementia in a nursing home - shes actually quite well really but the home wanted to talk to me about end of life care. Their reasoning it's easier to have the conversation now - which I agree is true so much easier BUT

What do I need to consider I do know mum would not want to be resuscitated, or kept alive artificially - so what else do I need to consider?

Do you mind me asking - I am going to be having this convo int he coming weeks and want to go into it fully prepared xx I sat with mum yesterday int he sunshine thinking - what do you want me to do for you. She was having a reasonably good day then she looked at me and said completely unaware of that's being said and in her failing voice with her jumbled up words she said I'm dying *GULP*

Thank you in advance for any insight - I do realise this is a hard thing to face I hope asking here isn't insensitive it's a huge thing to do for someone I want to get it right xx

 

[Noorza]

It's a very personal thing. I know that if mum's heart stops again she doesn't want the paddles, they cause a lot of pain afterwards. Mum wants the doctors to decide and her faith makes her believe that no one should have the power over life and death only doctors and God.

I know I will let the doctors know that she has often said she has had enough and wants to go but will leave the actual decision to them.

It's good you are thinking about this now as it will give you time to decide the right way forward for your mum.

 

[Grannie G]

Hello Brogues

The home is choosing the best time to discuss end of life care with you, while you know your mother is not yet at that stage but at the same time knowing her health can change very quickly.

What I think might be discussed is whether or not you agree to no intervention if things begin to go downhill.

I can only go by my own experience.

My priority was to ensure my husband was kept as comfortable as possible and pain free. I would agree to any intervention which kept him pain free and this included antibiotics and intravenous fluids.

When you have this discussion with the home be sure to ask for explanations of anything you don't understand.

I will say that however well prepared you think you are, you may still be shocked when a doctor advises the time has come to implement palliative care.

 

[cragmaid]

During one of Mum's trial death sessions ( I can smile now, but at the time we all believed that she was dying, including the Doctors) I spoke with her and also with the CH and the GP in order to discuss DNR. We decided together that: pain relief - yes, heroic measures ( ie CPR etc) - no. The GP actually put on her form "No CPR due to patient's frailty".
If, you are not aware of her wishes for her funeral later, then you could light-heartedly perhaps try to discuss this too. We've got all of Mum's plans written down.

Death is a fact of life and in my experience, we have coped with the hard times by talking it out and building smile memories rather than pushing it away, and denying it's existance.
This is what works with us, but everyone is different.

 

[Brogues]

Thank you I have spoken to my sister briefly today - we both don't want mum suffering unduly (obviously ) I will be asking lots and lots of questions when I have the chat I want the kindest gentlest route possible for mum x

 

[Brogues]

During one of Mum's trial death sessions ( I can smile now, but at the time we all believed that she was dying, including the Doctors) I spoke with her and also with the CH and the GP in order to discuss DNR. We decided together that: pain relief - yes, heroic measures ( ie CPR etc) - no. The GP actually put on her form "No CPR due to patient's frailty".
If, you are not aware of her wishes for her funeral later, then you could light-heartedly perhaps try to discuss this too. We've got all of Mum's plans written down.

Death is a fact of life and in my experience, we have coped with the hard times by talking it out and building smile memories rather than pushing it away, and denying it's existance.
This is what works with us, but everyone is different.

My dad died a while ago, and at the time mum made it VERY clear she wants as little fuss as possible and to use those undertakers as they were "no nonsense" Thank you for this I am pretty sure my mum might do a death trial, it sounds like something she could pull off xx

I think a sense of humour is essential - always xx

 

[Noorza]

Some of my family have a rather dark sense of humour. I have had the serious end of life/funeral discussion, my brother tells mum "You are too mean to part with our inheritance". He doesn't mean it, it's how he copes and it makes mum laugh so no harm done.

 

[kkerr]

Well done to your CH for bringing this subject up in advance, before its at a crisis point and emotions are overwhelming.

I think the best thing would be to talk to all your family, loved ones, friends, etc - discuss what you think your Mum would want, not want etc and then discuss this with the home. I think a DNACPR (Do not attempt CPR) form is a good first place to start. As posted before, CPR in the elderly, with dementia is generally a bad idea. a) it doesn't work, the survival rate for a an in-hospital (or in-care home CPR) is < 5%, and those that do survive it often are left with significant brain damage, often don't wake up and will then die in hospital in ITU. b) it can be quite traumatic, painful and undignified. Not the way I want my mom (or even myself!) to die. I joke (only half) that when I turn 65 I am having "DNACPR" tattooed across my chest! Unless I am electrocuted - then you can try once with the old shock, that's it!

Joking aside - the DNACPR is usually the easy part, the harder ones are making decisions for treatments like infections, problems with eating/drinking, etc.
These are the ones that you should discuss with your family, but really despite best laid plans, it may be that you have to react to the situation when it presents itself. But having a good idea what everyone is thinking/feeling will make decisions at that time easier. My mom is no where near end stage from a medical point of view, but very advanced from a dementia point of view, and already, I am very careful to keep her OUT of hospital at all costs. It is a confusing, frightening place to be for those of us with our cognition intact, and most hospital wards are not equipped to deal with advanced dementia patients on their medical wards.

So overall, I would probably avoid ANY treatment that involved admission to hospital. The only reason I would bring my Mum into hospital is if it involved some sort of pain that could not be controlled at home. This is one of the most important aspects to clarify with your CH. I have worked in acute medical admissions and the number of very unnecessary transfers from CHs is quite high. Often it is in the night, or overnight, and its due to unfamiliar or bank staff who panic because a person says they have chest pain or appear breathless or they seem unresponsive. To have a clear plan re hospital admission Dos and Donts would be very, very helpful.

I am sure this is so hard to talk about, but could save you having to make these decisions at the harder times.

 

[Brogues]

Can I ask is this the "peg" thing they were mentioning?

One thing I am worried about is if you say no to a feeding device, won't mum get very dehydrated and feel ill? It there no alternative? I'm worried about any undue suffering - I hope my family are as considered when its my turn xx

 

[Fed Up]

My dad died years ago and when mum went to pay for his funeral she much to our shock said while she was in the office she might a well order her own. Matter of fact, I nearly died of shock and she said no posh coffin, and no cars as "they've all got nice cars and can walk to the church anyway" just a basic do, and when would her dividend stamps come. They came and she bought a new tv. It was a while ago and no doubt she's saved us a fortune the cost nowadays of funerals. She made it clear NDR, and said that no one was to wear black. So for me, no consideration she said what she wanted and although she's so frail and it won't be long now I know pain relief yes, resus no.Even the director laughed when he said about the herse and when she replied that it was a waste to have flowers and surely the coffin had to go somewhere as it couldn't be strapped on a roof rack. Could it? I promise she's so mean, that if he'd said it was possible that she have told my husband to get one but no rush just yet.
It still makes me smile now her end is near such humour amid such sadness. I know dads waiting and she wants to go. So whilst we wait I know it is not her end just a new beginning in a happier place with him .

 

[garnuft]

It was the strangest thing, to bring my Mam home...to die.

It was the strangest thing.

Sometimes the end of life gets in the way of life and we have to make choices, even if the people we love haven't made those choices clear to us, we still have to make them.

I don't think my Mam knew she was coming home to die but I KNOW she was glad to be at home when she died.

I NEVER thought I could ever sit with someone while they died and not ring '999' but I did.

I always thought death was a robber of life.

I was wrong.


I hope you can find a way to discover the comfort and pain that lies at the end of the circle too. x

 

[lilysmybabypup]

Hi Brogues,

My personal opinion is that it's never too early to discuss End of Life Care, dementia or not. As you've said, you HOPE your family will make decisions in a careful and considered manner. You don't need to hope, have the talk with them now, we never know how our path will turn. I'm also trying not to be insensitive but it's sometimes a lighter conversation when it feels distant and almost unreal than when you're in the thick of the moment.

My dad had Alzheimer's but refused to discuss death or dying while he had capacity. His decline in the last 7 weeks was sudden and rapid, going from home to hospital to a nursing home where he was for 3 weeks before he passed. The decisions for palliative care were made by my mother, sister and me, and the clinical team in the nursing home. I'm an avid reader and researcher, so I scoured all the relevant reliable sources and we made difficult, but I believe wise and sensitive choices while our beloved husband and father was dying.

My advice to you is to start this talk, find out your mum's thoughts in a sensitive and non-threatening way, perhaps saying you're talking over the same things for yourself with the family. You could even start the talk by asking what your mum thinks about the decisions you've made for yourself, she may have strong views she would willingly discuss if it's about you but not herself.

I read much about palliative care, and it is divided at times, even in the clinical community, my sister and I wanted Dad back home but Mum was very much against it. She had had her Mother in law die in her home, which Mum shared, and was shaken by it for many years. I don't think she could bear to associate her own home, where she would continue to live, with the death of her husband. It's a personal choice. As far as medical treatments, medications, nutrition and fluids, for myself, if I no longer have a quality of life and my prognosis is terminal, how will I benefit from the discomfort and interference they may entail?

There's an informative paper published on the Alzheimer's organisation website in Australia where I live, which I found helpful. There may be some references to local groups or requirements which would not be applicable, but it has beneficial information on some of those decisions which must be considered. Here is the link, and I wish you well as you navigate this part of your mum's care.
http://www.fightdementia.org.au/common/files/NAT/Paper_35_web_v2.pdf

Stephanie

 

[SoyHJ]

Hello Brogues. Last year I had to do a trip to Australia to see my much loved cousin (we were more like sisters). She was terminally ill with cancer. During one of her 'brighter' moments we had a long talk about what she wanted. Her priority was pain relief but absolutely no attempts to resuscitate, in her words 'to keep her going'. We talked about the possibility of her returning home for short periods even though this was never going to be possible and I think in her heart of hearts she knew this. She talked to me about the type of funeral she wanted, her wishes re flowers, all that kind of thing. We even talked about what she wanted said at the funeral in the eulogy and she dictated a little speech she wanted to have said. (This last broke me up but I held on till I got outside).

This kind of discussion is never easy and I don't know to what extent your mother would be able to participate in any discussion however in my case, once these details were settled, however heartrending the conversation was, I know my cousin felt more at ease as did the rest of her family. Even if your mother is not able to take a very active part in the conversation you are going to have with the nursing home you will know that you will have ensured that her wishes, whatever they may be, will be carried out and, speaking personally, this gave both me and my cousin a sense of peace. Thinking of you. X

 

[Brogues]

My mum has an ability to communicate but she has trouble being understood, the main reason I am cautious of talking directly to her is she is heavily medicated for behavioral and anxiety problems - she often talks about death - it's her main topic of conversation these days.

I try to reassure her but she can't take in any information, you just bounce off her she doesnt even know the last word that has come out of her mouth. These days I am getting a mixture of clear words and gobbledygook gook - her peach is deteriorating markedly. Very hard to see in someone you love

 

[Witzend]

I was asked in to the CH to discuss this. My mother is in late stages but not apparently nearing the end yet - her general health is pretty good although she looks very frail now. She is coming up to 96.

I was in fact relieved to have all this down in black and white, since given my mother's utterly pitiful quality of life now, I was dreading that 'something' would happen and they would whip her into hospital by default, if for any reason we could not be contacted. And that in some case where Nature was finally (and mercifully IMO) trying to let her go, she would be determinedly kept alive. Hospital would be incredibly distressing for her now - it was quite difficult enough for her recently to have to go to A & E after a fall. She had no more conception than a 2 year old of what was going on or why it was necessary, and as for trying to get her to keep still for even a very short examination...

We have agreed that unless it is absolutely necessary (e.g. God forbid another broken hip - she has already had one) that there shall be no hospital, and there is to be palliative care only - all possible relief of any pain or distress. There are to be no IV fluids or pestering/badgering to eat or drink if she starts to refuse either - these are to be offered only.

Although she now has zero capacity, we know 100% that everything we have said and asked for would be our mother's own wishes for herself.

 

[NewKid]

My Mum just passed away - end of life care plan brought much relief

I wish you well in this very difficult decision-making process and urge you to be brave and have the talks as soon as you can - going by your own instincts if necessary.

My own Mum passed away yesterday and it was such a relief to have her comfortable and safe in bed at the care home, with the staff popping in to check her and give her kind words and comfort. When I arrived and spent her last afternoon and night with her they gave me great kindness and space also. I will be forever grateful.

Yet I only did the paperwork that allowed this six weeks ago and prompted by the staff sending her to hospital, alone, with DNR forms, despite her advanced dementia. This must have been very traumatic for Mum and was a complete waste of time anyway. This was very saddening for me and a real worry as I was 100 miles away working and the staff (too few of them to accompany her) were just following professional procedure and covering themselves. I did the official 'no hospital' paperwork straight after as well as 'best interests' end of life requests, with the GP in attendance. I admit this was very hard and covered many scenarios but it lifted a great weight.

I requested drugs be administered as needed - including using a syringe driver which a district nurse can insert (ie it doesn't need to be a nursing home). Similarly I pushed for oxygen mask if Mum became overly distressed, and was told the care home had these but needed a GPs permission - so we included the request in the form. We agreed we wouldn't force food or drink, but try and keep her hydrated - residential homes cannot feed via a peg and would I think regard this as a preventative procedure. I present this only as my decisions, but also hopefully to give you a view of what is possible to request.

In the event my parent's passing was very natural and peaceful.

I feel for you and wish you well. Every stage is so hard x

 

[sheila55]

I had this discussion in Mum's care home a few weeks ago. It was done quite informally with a nurse, my sister and I and Mum, although she did not have to be there as we have POA.

We were only asked to make a couple of decisions. One was whether we wanted "Do not resuscitate" on Mum's file, which we do. The other was that we agreed if Mum was unwell she would only go into hospital as a last resort because when she was in hospital she was extremely distressed.

I was dreading the discussion but it was not as difficult as I thought it would be and it is good to know that these things are now on Mum's file for the future.

Good luck. x

 

[Saffie]

This may be about more than just the DNR.
I had already agreed to this and the Purple form was in place.
Immediately after my husband entered his nursing home, I was given a form and on it I was told to imagine I was my husband and to write down what I would want as I reached the end of my life.

For example, would I want to be taken to hospital or would I want to stay in the nursing home for my final days. Other things too, along those lines.
I was assured, however, that this didn't mean he would not be given antibiotics when he needed them or pain relief etc. but, presumably, no invasive interventions.

I was taken aback as I was still trying to come to terms that my husband was not returning home from his 9 months in hospital and found this hard to take so very soon.
However, since being on TP, I am more aware of how this works so feel happier about it now.