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.

[Eebahgum]

I don't have any advise I'm afraid but just wanted to offer a hand to hold. My Nanna had alzheimers - it's a horrible, horrible illness.

[BadgersRetreat]

oh gosh that's hard - my DGM suffered from Alzheimers, and it's very cruel.

so is she back at her nursing home? Do they have a resident/visiting doctor you can talk to?

[IvanaCake]

So sorry downton

It sounds like your mum has had enough and given up. I cant offer any constructive advice but I really feel for you.

[Campaspe]

I am so sorry to hear this. There are no easy answers. I suppose you have to try to ascertain if your mother has any will left to live, and let this guide your actions accordingly. I think to see someone you love in despair and so confused is hell on earth. As you say, this awful disease robs you of the person you love. I do hope you can all find more peace soon, and remember your mum as she was.

[magimedi]

My DM also had Alzheimers & I really fell for you, Downton.

Obviously I have no more knowledge of this situation than your post but I think I would go along with end stages.

My DM got pneumonia & was kept comfortable but no intervention. It really was, I still believe 15 years on, for the best.

Can you ask the staff for some of those sponges on sticks to wipe round her mouth - so that isn't uncomfortably dry?

[musicalmrs]

I'm so sorry Downton. Nothing to say to help but just wanted to hand hold. I'm in a similar situation with my Grandmother - stopped eating, depressed.. so difficult to know what to do for the best.

[MadameOvary]

Oh you poor thing. Alzheimers is fucking horrible. I don't have any advice either but couldn't not post. You sound like you have done a good deal of grieving already. I hope you are getting support. x

[bendertherobot]

So sorry to hear this. My nan was like this too. I hope that someone here has some proper advice.

[Floralnomad]

Somebody once said to me that people with dementia stop eating because it is the final thing that they have control over , sad but probably true . I think the best you can do is support her to a dignified end .Sorry x

[BagOfCats]

Agree with badgers- contact your mum's gp. They can discuss capacity etc. I think it makes it slightly easier if a medical decision is made as to what to do next, so that you don't feel you're the one "leaving her to fade away". (Which youre not, by the way, you sound like you are trying really hard to act in her best interests.) She can be given fluids in hospital to rehydrate her but realistically if she is frail and unwilling, it would be pretty cruel to start artificial feeling, either by nasogastric tube or via a PEG (tube into bowel). On the other hand, if she says she wants to die, if her depression was treated would she have a better outlook on life? All things that her GP should be able to discuss with you and her carers, weigh up the risks, benefits, pros and cons. As she becomes increasingly frail she will obviously be more susceptible to infection etc so a medical plan as to what to do in that instance would also be a good idea- should she go to hospital for antibiotics, resuscitation if necessary, or just oral antibiotics in the comfort of her care home etc. I think this will help to preserve her dignity and hopefully ensure her (and your) wishes are met with regards to her care going forward. I hope that is not too blunt, just always easier to sort these things out now rather than leaving til the decision is out of your hands.

[WynkenBlynkenandNod]

If you think back did she ever give yo any guidance as to what she would want in this situation ? Really sorry, it must be so hard. My Mum has Dememtia and I do know what she wants in this situation but one thing knowing and another doing.

[DowntonTrout]

She is in the dementia area of her residential home. It may be that she needs full nursing care now.

The problem is that no one seems to want to say anything. I have asked them to get the GP in tomorrow, because she is dying in front of my eyes. But I had to ask them to do this.

I would like a straight answer but I don't suppose there is one.

[BagOfCats]

Apologies for ridiculous lack of paragraphs. Meant to say also my mother has dementia, although not at same stage as yours yet. Terrible, inhumane and cruel disease. I like you feel that I have already grieved a lot for my own mother even though she's still with us (although not really with us, if you see what I mean)

[sicily1921]

Hi Downton, I'm really sorry to hear about your mum firstly, I lost my mum this year, it is terrible to see them ill and weak.
I am a qualified nurse so I do know what I'm talking about a bit, but I am not an expert in elderly care and do not really have experience of residential homes. That said I would have thought the residents should all have access to a GP/geriatrician? I do not know whether Alzheimers is considered a bit like a terminal illness and there is some sort of proper care pathway for professionals to follow?

It does seem a bit of a catch 22 though in that if your mum is not hydrated it will cause a lot more confusion that she has already, she will also be even more uncomfortable eg thirsty, dry mouth. She should at least be given some fluids, perhaps by a drip (IV). Does she seem in any pain? If she really has no will to live then she should at least be kept hydrated and comfortable IMO. I hope this helps, love to you and your mum at this stressful time.

[MousyMouse]

this is so tough, sorry you are going through this.
my nan died after a fall -broken hip.
it was operated but she never recovered.
as you describe she just ate a bite if encouraged, but didn't have the urge to eat/drink anymore.
she died peacefully 39 days after the operation.

hope in your case it goes differently, but my nan wasn't in pain and at peace the last few weeks. she was just 'ready to go' as absurd as it may sound.

[sicily1921]

Read your post again (sorry a bit rushed as also have DD in my left ear) and it sounds like you certainly don't want any 'aggressive' treatment which I thoroughly understand. If this was my mum I would be discussing with staff that she must be kept hydrated and comfortable, I would not be force feeding in this situation.

[DowntonTrout]

Thank you for all the replies!

What is a dignified end and how do we get one- that is what I need to know.

She is depressed and has been for years, she is on antidepressants.

She is so dehydrated that I could lift the skin from her hand and it just stays there. I'm also pretty sure she has ketosis (sp?) her body is just eating itself.

[Tabby1963]

Just wanted to say how sorry I am for your situation, it is a difficult position to be in, your mum is lucky to have you looking out for her.

[DowntonTrout]

Sorry not to name check. I am reading and trying to remember your questions.

I certainly wouldn't want any kind of force feeding /PEG for her.

Yes she is in some pain. She is refusing her medication. She is finding it difficult to swallow anything. Even fluids. She needs constant prompting to take even a sip. It took my an hour and a half today to get her to drink an inch from a cup. Left to her own devices it would be nothing.

With the best will in the world the staff are not able to spend that time. I also found her call button unplugged yesterday which I can't even begin to tell you how furious I was about.

[BadgersRetreat]

hmm it does sound like maybe she needs full time specialist care. Is there a home in your area that caters specifically to dementia sufferers?

The home she is in now might be able to give you some suggestions of more suitable places?

[skiesmylimit]

This is so sad downtown, I am a care assistant in a dimentia care home, it is such an awful illness.

I am truly sorry but I haven't any advice. Just unmumsnetty hugs xx

[fffinsake]

I wonder if it might be helpful to talk to someone objective, perhaps an Alzheimer's charity or something? Sorry, nothing specific to suggest but from being in similar situations I sympathise and think it's ok to go with your instinct and don't shy away from that x

[BagOfCats]

I think she needs palliative care involvement- that isn't just for cancer sufferers, just decent, end-of-life care. This should be able to be provided by GP and district nurses.

Re the fluids Q- as she becomes more dehydrated, fluids become possibly even less appropriate- think of the difficulty of inserting a cannula into her dehydrated skin and veins. When consciousness levels are dropping, things like good mouth care are every bit as important- so think about artificial saliva (orabase gel, gp can prescribe) which would make mouth much more comfortable, and I think someone suggested those little sponges which can be soaked and sucked or just swooshed about her mouth.

Re pain- syringe driver is a good idea, this allows a small but constant amount of a drug to enter her system, usually by a tiny soft needle just under her skin. So she could have a little bit of pain killer, and something for agitation. Not to knock her off more, you understand, but to keep her comfortable. Oral drugs pretty useless if she (a) wont take them and (b) won't be absorbed properly if too dehydrated.

[belatedmaybe]

They are talking about end of life plan, it has a name but it has slipped my mind now. Basically when she refuses food and water she isn't forced. Just made comfortable with pain meds and mouth care. This way she will slip away. I don't know about legalities of it but it is common, especially with dementia patients. They are probably asking, in a round about way, do you want to let her go.

[DowntonTrout]

The problem with moving her now is that it would be terribly distressing for her. She is confused enough as it is but at least there is some semblance of recognition.

She is on the dementia floor in her home but it is not TMI ( is that the correct term?)

I think, if left like she is now she will die within a week or two. Just not wake up. But what is killing her is starvation/dehydration, not the Alzheimer's. That seems wrong somehow.

If she goes to hospital and is put on a drip she will survive longer, maybe even recover enough to continue her miserable existence for months/years. Is that just torture? When she was in hospital after her fall she was trying to throw herself out of the window. I can bear this for me but I can't bear it for her.