My mum hasn't eaten for 16 days, possibly longer.

[DowntonTrout]

I don't know what to do. It could be as long as 3 or 4 weeks since she ate anything solid but she may have had a bite of toast or a spoon of pudding. She is not drinking either and is now just refusing everything. She is dehydrated and very weak.

Mum has dementia, but was doing ok in her residential home. Then she had a fall and fractured her hip 5 weeks ago. She wasn't really eating in hospital but they discharged her anyway just over 2 weeks ago. It looks like she hasn't eaten since.

What happens now? If they take her back to hospital and put her on a drip she will be rehydrated, but for what? She is so unhappy, she says she just wants to die. I don't know how to help her, or comfort her. The staff have murmured about end stages but say it is up to us. I suppose they mean intervention, or not. There is no quality of life left but I feel asif we are just leaving her to fade away and die. She is 6 years into the Alzheimer's but it robbed us of my mum a long time ago.

Another hand to hold Downton

Dementia is a cruel and horrible disease for all involved

A dignified end is somewhere cosy and comfy, with people who love her, compassionate carers. Minimal interventions, just hygiene and positioning and hand holding. Food and drink as and when she wants it, not encouraged if she doesn't, drugs to help with pain, panic and secretions associated with dying.

Have a chat with GP and see of they think an end of life care pathway (eg. LCP) is appropriate.

I know you're concerned about eating and drinking, but just to reassure you that in the final stages, as metabolism winds down, people dont need as much as healthy people. The body just cannot process fluid as it used to, so people do not get as hungry or thirsty. I don't know if this is where she is yet, but just in case, know that it probably isnt as uncomfortable as we imagine.

I hope you get the medical intervention she needs soon. 16 days is a bloody long time, and the people looking after her really need to assess where she is in her life and what they should be doing for her.

Best wishes for both of you (mumsnetty or not).

Is she under the care of the GP in the home?

It sounds like she is in pain, which they could control better in hospital and have some IV fluids. Is that something she would want?

I would say to allow a dignified end, patients should be as comfortable as possible. It's so difficult, your head and your heart probably want different things for her. I've had the privilege of nursing many patients during this stage, it's always different as people have different needs and ideas. But the main things are always comfort and family.

Have a think about what you think a dignified end would be and work from there.

Belatedmaybe that has made me cry.

It is end of life care but no one will talk about it.

I really need someone to be blunt and tell us how to manage it. It is as if they are afraid, because they know what is to come.

I cared for my dad 3 years ago in my own home, right until the day before he died, when he went into the hospice. No one would tell me anything then and I knew, I had to fight for them to take him. They told me he could go on for years, but I knew it was the end. It's like end of life should never be mentioned, in case they upset you, or they are wrong.

oh downton i am sorry - it sounds like she really is miserable. And yes you could well be right about moving her. Does her home offer palliative care?

as another poster suggested - maybe the nurses are approaching the option of letting her go by bringing it up in the hope you'll start asking questions.

I'm not sure Alzheimers actually directly kills it's victims a lot of the time - DGM died of peritonitis from a perforated bowel.

She couldn't communicate that she was in pain, just sort of became unwell over the course of a couple of days, and DGD noticed when he visited her. Doc asked her if she had pain, she said no, but she must have had. Alzheimers makes other illnesses far worse/harder to dx due to the patient not being able to communicate/forget how they have been feeling

Don't let her linger. Not if she's had enough.

X-post with you, sorry! If she goes into hospital, she will be hydrated, but the nutrition team will have a discussion about whether she needs additional nutrition and whether it is fair.

I don't know how advanced her disease is, but unfortunately, this is the usual trajectory for dementia. It's an awful disease. She just needs lots of love and comfort. I know you are giving her that.

I too would be avsolutely livid about the call button being unplugged, and asking some serious questions of the carers, when comfort and patience is what people with dementia need so much!

Oh downton I'm so sorry to hear about your Mum. I deal with this both professionally and personally.

My advice from a professional POV is to think - what would my Mum have wanted? If she could express her opinion on this, what would she want? I see different patients stop eating - one is control as mentioned above. The other is where a person seems to lose the ability to eat. Like the brain can't process that they need to open their mouth to allow food to go in IYSWIM? Choices for alternative feeding aren't great with dementia/Alzheimer's. they can put a drip up for hydration but that's not long term (and I suspect it might be difficult to get a vein?). They can put an NG tube in down her nose but they should only be in up to 3 months and are a short term option. Many people pull them out too. The option of PEG/RIG (that go into the stomach) aren't ideal for people who are frail.

I would advise that you speak to the GP about end of life care - you need to be thinking about her location - would she be better off in nursing care? Or would the move be traumatic for her? It might be the residential home could meet her needs with input from community nurses as well.

Ask the GP if they're signed up to the gold standards framework. This is something that aims to provide end of life care for patients predicted to be in the last year of life. Basically you need a candid conversation with healthcare professionals about where you go from here, what's best for your Mum and the best way to approach things. I hope that helps a bit.

So sorry you are having to go through this, I was my nans carer until she died a few months ago.
She wasn't in a home but had carers coming in and towards the end the gp came every other day. He told us she wouldn't live much longer and that she had lost ability to swallow. We had to get the doctor to sign a DNR for her as eventhough she weighed less than 4 stone and couldn't communicate anymore the carers and paramedics were not allowed to leave her to die.
They ruled out a drip as she was likely to pull them out. Not sure how much of this is a nationwide thing or just our experience, but the doctor was amazing and answered all of our questions.

mamachubbylegs you seem to know.

As mum takes a sip of a drink she gets dreadful gas/ indigestion. It is painful for her and almost stops her breathing. Is that what you mean? Is her body shutting down and not able to process it? After I gave her the sips she needed the loo and it came out like diahorrea almost immeadiately (sorry,sorry to be graphic.)

The GP, I am so angry, refused to come out when she was discharged from hospital. He said he had her notes, that the hospital said she was eating and drinking ok so he was satisfied. This was blatantly not true. So no doctor has seen her. The surgery was closed this afternoon and the on call doctor would only come out in an emergency. Which it wasn't.

Oh God, she's dying and no one noticed.

Few x-posts.

Badgers people with dementia die for three reasons - either of something else (like a heart attack), something as a consequence of dementia (like a fall because they're disorientated, pneumonia is common because dementia causes swallowing problems) or as a direct consequence of the dementia e.g. Not eating/drinking.

My Mum had a dignified death. A bit different because she had cancer. However she was comatose at the end. She died pain free and peacefully in a quiet room. That's what I'd hope for for my loved one again.

downton it's a difficult question but in your opinion do you think she's stopped eating and drinking because of the pain? Or because she doesn't know how to eat and drink any more? I would push to get her reviewed by the on-call tonight based on what you've just said.

The community nurses came in today to give her her anti clotting injection. I voiced my concerns and they tried to take some blood to check. They couldn't get very much out. It was distressing.

I am truly sorry to hear this . It is extremely hard as a relative looking on, but perhaps she has decided this really is it and she doesn't want to go on any more?

This is how my grandmother left the world. She decided it was her time but the only way to make it happen was to refuse food, although would drink a little tea. All her family went to visit her and looked through photos with her and told her how much we loved her. It was all we could do. It seemed disrespectful to do anything else, she had had enough and she made her choice.

Is it possible your mum's situation could be similar?

Oh I'm so sorry downton.

Downton my mother went through the tube feeding and I fought for her to have it because I knew she would fight death until the end. But I'm still not completely sure I did what was best for her because she did pick up an infection in hospital and the last weeks of her life were horrible. My family have very clear instructions that I do want that should it ever be suggested. So unless you know that she would want something different I urge you to raise with the staff end of life care. They may be reluctant to mention it until they can see you are ready for the end.

With another relative it was suggested that pain relief might hasten the end and they skated around whether we wanted that. Everyone agreed it was the best and that was a much more dignified death.

Sometimes people lose their ability to swallow. This happens a lot with dementia. When this happens, it can be painful or frightening to have liquid in the throat, because it irritates the airway.

I can't say what is happening though as I am not with her. She really needs to see a doctor who isn't an arse. Is there any way you can get her into a hospital? I'm sure I had a patient present in A&E with 14 days loss of swallow before. Can you call 111 and see what they suggest?

Your GP is acting hideously. I would kick and scream and DEFINITELY complain.

It's not unusual for her to refuse food. We have had three or four periods of it after upsets. Her partner died, when she moved into the home and when she fell last year and broke her foot.

But she has always rallied and has continued drinking, and eating bits of fruit, treats that I would take in for her.

It has never gone on this long. Before I think it was anger, confusion or stubbornness. This time is different. She could not even manage half a grape today- usually her favourite. It started after the operation in hospital but now I think she has lost the ability.

Oh downton. I'm so sorry. Horrible disease. Distressing for uou all. Love and hugs to you.

ah yes that makes sense Keep

Sorry to be blunt but would your mum have the ability to make the decision to refuse food? I know my grandma wouldnt have had the ability to process that thought or the memory to persist but I realise your mum's AD may not be as advanced.
As others have said she needs to be seen! So frustrated on your behalf

It's not my GP you see. It is the one allocated to the home. I have never met him. But I'm sure he is an arse! I don't know when the GP is going but they are under strict instructions to call me so I can be there.

I'm not sure I can do anymore tonight. I will kick ass tomorrow and tell them that we need to discuss end of life care and if they can't manage it I will find somewhere that will.

I will not let her be forced to eat normally or intravenously. I'm not sure I will allow her to be put on a drip unless they believe she can regain quality of life.

If I'm honest, I would like her to have some morphine and drift. I hope something like that is possible.

It must be. That is what I would want for loved ones and for myself.

Downton that is totally possible. Thats how we look after those at the end of life. Dying is the last thing we'll ever do, and it should be nothing but pleasant.

Best of luck with kicking arse

I don't know about the ability to resist. Yes, she did before the fall.

Now I'm not sure. She became delirious in hospital and I think that was the start of it. When we prompt her she says either she doesn't want it or she can't. It was obvious today that she just can't anymore. The reaction to the drink told me she had not had anything at all for some time. Her body was just expelling it.

im so sorry downton.

Good luck tomorrow Op - hope you get some help