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.

You can see them reverting back can't you? When he was able to talk and more placid I would go straight from work. I always wore dresses and knee high boots to work, but in his eyes he was a teenage lad in the army so would make very inappropriate comments and flirt. Very very difficult to deal with. Then he got this obsession with a stuffed dog, he only spoke to it, cuddled it constantly, would be frantic if it wasn't there, like a toddler. Now he's off solids and bed bound like a baby. Its such an awful disease to watch, and affects everyone so much.

Oh downton I didn't mean to make you cry I am sorry.

It honestly sounds like your mum has had enough. Dementia is dreadful, a lady I look after regularly asks us to kill her. She knows mentally that she wants to go but physically is strong and pretty healthy. It breaks my heart that she cannot make that choice for herself - and I have no doubt she would.

I do think the home should talk to you though, explain the physical process if you decide not to force feed/put her on a drip. Our training on end of life is almost 50% care of relatives and friends. Neglecting you now is just as bad as neglecting your mum imho.

People talk about the bastard cancer - and it is don't get me wrong. But I feel dementia is a close second, I really feel for you.

Hi OP, hope you managed to get some rest ready for the challenges of today.

I've worked with numerous patients like your mum and agree with PPs that you need to push for another review by medics. I have seen this type of situation dealt with by doctors in both medicine and / or psychiatry - both have slightly different angles but for your mum should be working together to understand what's going on with your mum and how to move forwards.

There has been lots of horrible (often incorrect) info in the media about the Liverpool Care Pathway but you may e at the point where that needs to be thoroughly discussed and applied of you as a family are in agreement.
Admission to a psychiatric / mental health unit specialising in dementia may also be beneficial as they really are experts in this.

It's a horrible situation for you, so sorry you're not being supported in this - its not really the same as RL but there are lots of us here on MN who can offer a sounding board if you need it....

How did today go?

i think people are 'euthanised' more than we realise

i know for sure Dad's last dose of morphine was a big one, to help him along a bit.

Badgers I agree. I think that is a good thing really.

How was today downtown?

Just wanted to say that my heart goes out to you as I was in a very similar situation this time last year. my lovely mum deteriorated before our eyes - she had lived with the progression of Alzheimer's for six years and in the last 4 months lost any interest in food and drink and had to be coaxed to eat and drink before refusing completely. One person I spoke to said that it is like the part of the brain which processes hunger and thirst signals has just tuned out and that the actions of eating and drinking then make no sense.

So sorry to read this Downtown

Re
"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."

I think you need to look at this as the Alzheimers. At some point far into the illness they will stop eating and drinking, it is natural. I was told when my mum gets to that point, she wont be fed/watered/given a drip. When she gets to that point her body wont be able to utilize the drink/food, the brain does not recognize hunger or thirst, and she may have lost the ability to control swallowing. My mum is not there yet, but I do dread the day.

I hope today went well and you have some more answers.

Hello all. Just checking in to say we are no further on really. The doctor has been and says she is "not end of life yet." But with no solutions how to deal with things.
Mum will have a few sips of Fortisip but is now saying we want her dead and is convinced we are trying to poison her. We have requested all her medications to be in syrup form but she is refusing even those.
She is becoming increasingly agitated and aggressive- something I have not seen before. She is angry and shouting at us and it is very hard to stay with her for more than a few minutes as by being there it seems to make her worse. No one is suggesting withholding fluids, but no one can get her to drink- except for the few sips we do and I think even that causes discomfort. So hard.

I have nothing to contribute on a practical level but I want to send love and blessings to all of you.

I am in Glastonbury and have been thinking back to the time I was here in utter despair at my my poor mother's 'life'. She was literally at death's door, hanging on by a thread. I spoke to someone at a Healing Event at Chalice Well who gently asked if I had told Mam I would be ok if she left me.

On my return home I arranged for her to receive Holy Communion and sat with her, holding her hand and talked about all the blessings in my life and my gratitude for all the love and care she had given me. I also apologised for being a narky teenager back in the day

The next day she slipped away.
I was going to suggest this for your mum but you said she is angry. I am so sorry, I hope the time comes when she can find some peace x

Thank you Earthymama we are not there yet. It would almost be a relief if we were.

Just such a bastard of a disease, Downton.

And it will be a relief, for her and you.

Thinking of you.

I'm sorry to hear this Downton. Have they checked for basic things like a water infection? Did this come on while/soon after she was in hospital? It wouldn't surprise me if there's an underlying medical cause for her behaviour if its sudden onset. How would you feel about her going back into hospital to treat this? If you're ok with the idea I'd be pushing for admission. If its an infection, they could try IV antibiotics and fluids. Could be constipation causing it. I think she should be on a specialist older people's ward my bread and butter! to get on top of this.

I went through this recently with my father - I feel for you from the very bottom of my heart. I watched my father slowly die from dementia and dehydration (he took a while to do it, he was very strong). I think it is natural to want to do everything we can for those we love, but, ultimately, we must remember that there is no cure for dementia - it is never going to be better, it is downhill all the way. The sufferer can be put on a drip, maybe go to hospital, but if they are in an advanced stage of the disease, is this really in their best interests? My father had a "living Will" - he did not want to live at any price. My mother and sister and I sat by his bedside for four days and four nights as his life slowly ebbed away and his breathing got shallower and shallower until it stopped. It was utterly destroying, but I do believe that it was far, far better for us all (him included) than going into hospital and ending his life tied to machines and surrounded by strangers.

Her GP identified a possible UTI. She is refusing the antibiotics to treat it. Just as she is refusing the dementia medication, antidepressants etc.
we could push for admission and for a drip but I am not sure what we would be gaining by that. More time only seems to prolong the torment. It is likely that in her current state she would pull the drip out.
Basic care is now limited- getting dressed, a bath/shower, brushing teeth- all impossible because she will not cooperate. We tried ice cream today- she thinks it is poison. There is no reasoning with her- nothing comforts her. This disease is so terrible that it steals your soul and leaves a shell that bears no resemblance to the person. She is- to all extents- already dead but stuck in a living nightmare with no hope at all. And it seems that no one can help us out of this misery.
I never really understood that dying is a process- death is only the final part of that. I thought people just died. But the part between living and death can be a horrible long, drawn out tortuous time. When she says "you want me dead" she's right- no one should have to live this way.

Would the doctor consider giving her a sedative injection? She is obviously mentally in huge distress.

This happened with my mother, who had vascular dementia. She was admitted to hospital after refusing to eat or drink, suspected UTI, put on a drip, but after a few days of her batting away anything anyone tried to put in her mouth they took the drip out and she was put on the LCP. On one of my visits, her breathing sounded painful and the doctor began to give her small doses of morphine to make her more comfortable. From then on, she was asleep/unconscious until she finally faded away. It did take a lot longer than I was expecting, even tho' she was 94, but she was in no pain and it was a very peaceful death.

But she very obviously wanted to die. In one lucid moment said that she was pleased to be in hospital because she wanted 'to go to a better place'. Don't know whether that helped convince the doctors.

So sorry you're having to go through this. I would keep ringing the GP. It's not fair on her that this situation should be allowed to continue.

You can ask for a second opinion. The Gp sounds unsympathetic. What a dreadful situation for you and your mum.

Downton so sorry you are going through this. We lost my granda to dementia 9 days ago. He was further on, knees drawn up, and unable to move and lost the ability to swallow at all. My gran had been his carer for almost a decade. She decided not to peg feed him either because it would have just prolonged the inevitable. It's horrible. He was unable to eat or drink from the Monday and passed away on the Thursday. He hadn't eaten properly for months, was on these shakes, but was very skinny when the time came.

It's such a horrible disease. I have nothing to add, other than my thoughts are with you.

Downton, I'm so sorry you're going through this. I've been thinking of you and your mum this weekend. Alzheimers is a bastard of a disease. So cruel. I agree with Thymeout regarding asking for sedation. Why not make her existence as peaceful as possible. Poor thing. Surely a few hours peace is going to be more valuable to her than panic.

(And regarding those who said we "euthanise" people more often than we think, I know you mean that as a good thing, but can I assure you that that is really, really not the case. Being someone who is heavily involved in end of life care, and recently battling against the damage that the Daily Fail's anti LCP campaign has done to public trust in us, I can't say enough how incorrect that is. Again, I know it was not said as a bad thing, so not trying to be argumentative )

The thing is, the Alzheimer's has not affected mum physically yet. Up until this last fall, broken hip and operation, she was fit, able to dress, toilet, feed herself etc. so she is still quite strong. This is why she is not end of life, despite not eating/ drinking for this length of time. I don't know whether the inability to swallow is the disease or a mental choice she has made.

I don't know when she was last washed. Does this matter now? I have been looking at some dirt (poo) under her foot for a week now. I have not wiped it because I wanted to see if it was noticed or cleaned. It is still there. She will not allow anyone to touch her. How can anyone care for her if she will not let them? She pushes away anything put near her mouth so the drinks and medication is not getting inside her. Swapping her tablets to syrup is not working as she need 8 different types 2/3 times a day. She has not swallowed that amount of fluid in the last week, never mind 3 times a day.

She screams and screams when the district nurses come to give her her anti clotting injections. It doesn't hurt- she is just terrified. She also fell again over the weekend. They found mum on the floor in someone else's room in the middle of the night. We don't know how long she was there and thankfully she seems unscathed this time. However it's clear there is not enough supervision. I am just at a loss where to turn now. If the home admits she needs more care than they can offer I don't know what we will do.

If we ask for sedation we are effectively choosing to end her life aren't we? Or do you mean sedation to enable a drip and medication to be administered in the hope of some sort of recovery?

My mother was in this position following a fall....and it was awful to see her fade .
Her dementia was at the stage that her body did not even remember how to process food- so we asked for intensive pain relief but no intervention (ie Liverpool Care Pathway). The hospital would only refer us to a hospice.

There she received palliative care and the staff were wonderful. I cannot recommend hospices highly enough.

It is a hard period to get through but I hope you remain strong and find the best solution to ease your mother through her final period of life.

Mum should never have been discharged from hospital. They lied about her eating and drinking to mums home because they wanted the bed. The home wanted an air bed and fall mat but they never materialised. In hospital mum was supervised 24 hours, someone sat by her bed at night.

I am going to see the assistant manager at the home today. She has been on holiday for 2 weeks and it was her that did the assessment for discharge. I am hoping she will see the huge decline and will be able to give us advice as she was reluctant to take mum back at the time.

DowntownTrout, sorry you are having to go through this. I'm a care of the elderly nurse and I work in a nursing home, so we encounter your mum's situation on a regular basis.

When somebody is nearing the end of their lives, their natural inclination to eat and drink declines. Often, putting them onto a drip causes more discomfort.

I would say that the priorities for your mum's care are: to ensure that she doesn't develop any pressure damage - she will need regular turns and to be nursed on an airflow mattress (very important) - she will need regular washes, changes of nightie and bedding - mouthcare - sponges soaked in plain water or an artificial saliva spray to alleviate dryness - a calm, quiet environment is important, perhaps with a favourite cd or music playing for her.

Pain can be alleviated either via a syringe driver which delivers medication in liquid form just under the skin, or via a patch (like a nicotine patch) which just sticks to the skin - we use these often and they're very effective. Medication for agitation is usually administered via a syringe driver. If someone because chesty, a patch for excessive secretions can be applied too.

She will need qualified nursing care, so I don't know if she can be moved to the nursing floor within her existing home. Perhaps another home in the area would be better placed to care for her.