Experience of end of life care, stopping eating and timeline.

[Zigzagga]

Hello

A close family member has Alzheimer's for about four years. They have been bed bound for about two years now, cannot move, cannot communicate and are spoon fed.

In the last few weeks they have been refusing food and sometimes water. On average they are eating about 5 tea spoons of food a day (on a good day) maybe yogurt or some buttery mash. Some days barely that and barely any fluid.

What I've found so hard about this journey is the unknown timeline. Another close family member is the sole carer and we have managed to keep family member at their home and in as much comfort as possible - but the toll on the carer is astronomical.

Just looking for experience really, is this 'the end' do we have weeks, months, years?

Thanks

Zigzagga · Today 11:07 my mother is in a very similar situation. She has not (so far as I am aware) totally refused food but your description of your family member sounds very similar.

No answer but . If you have already said the apologies i missed it but is your relative in full time care/dementia care home or are they being cared for by family members? x

PS I get what you say about timeline. In my situation it has continued for several years like this (unable to do anything at all for herself and cannot communicate in any way with the outside world).

My DF had a degenerative disease that eventually left him with locked in syndrome. He chose to refuse food and water as a way to end things. It took about two weeks but it was very painful process for him physically. The care home he was in were not happy with the decision we, as a family made, and were keen to have him admitted to be rehydrated and tube fed, but we knew he had made the decision to end things.
We felt that the young doctor looking after him could have prescribed better level of pain control.
I would be keen to chat to GP who is caring for your relative and insist on good pain relief. A morphine driver would be the best solution.

Hi, people refusing food can last for a couple of weeks on very very little, once they refuse fluid it’s days, when she reaches that stage move on to mouth care so she is comfortable. It sounds like she is winding down now so you’re looking at a couple of weeks Ime. Are you thickening her fluids and giving her meal supplement drinks ?

In my mother's case it took about a month, but towards the end she refused water as well as food. She was completely mentally alert though. I can't go into the details as it's too distressing. There should be an alternative. Though having dementia obviously makes consent a real issue.

It took about a month for my relative. Just the odd spoon full of food and a sip of water or tea. The end was very peaceful

Sorry that you're in this situation. We had similar, back in September, where my mother (with advanced dementia) was choking on all food and liquids, and, to all intents and purposes, at end of life. The GP prescribed end of life medication and she was on mouth care only. After almost a week of this, she rallied, started eating and drinking again, and three months later she's still alive, able to sit out of her room, and is back to where she was beforehand.

I found the not-knowing so hard to deal with. We just want my mother to die. She has no quality of life. She doesn't know us; she has no speech; she can't see properly (cataracts); she's incontinent. But she could go on like this for years. It's an absolute emotional rollercoaster.

What DappledOliveGroves · Today 12:50 is exactly what happened for our family.
The problem is the care/carehome have one job which is to keep your relative comfortable and in as good as possible health as can be expected. Obviously that means that the person with dementia / cannot speak or make known their wishes etc will continue to be given anything which keeps them alive for as long as their heart continues to beat.

Thanks all for your comments.

She is being cared for in her home by a close relative - and carers come in 4 times a day to change her. There's zero communication, I'm not sure she knows where she is.

My relative has done all her feeding and has been told by the medical team to not force feed her, she tries hard to ensure she eats something but doesn't force her obviously.

We won't go down the tube fed route - that's been decided.

I feel awful saying it but we all just want her to pass away peacefully, this all feels so undignified and not at all what she would want. She had deteriorated a lot in the last few weeks with hardly eating anything.

How is the decision made to move onto mouth care? Do you ask for a doctor to come and review her? No clue!

When my mother went onto mouth care only, it was because she was aspirating food and liquids, even thickened water. She also had a chest infection and seemed to be on her way out. However, after a week or so of this, she started trying to "eat the toothpaste" (to be honest, I have no clue why staff were still brushing her teeth at this point but hey go) and they started to up the food again as she was hungry and at this point, she was able to eat again without aspirating the food or drink. I imagine it all depends on the circumstances.

I hope you have medical professionals available to give pain relief, if there is any sign of that. In my experiences though, this means the end is near. Have the GP do a home visit to put any concerns you have to rest.

It sounds like you need the GP to visit and prescribe end of life medications. They will refer to the district nurses, who will demonstrate mouth care.

I'm so sorry you're in this situation. Definitely get the doctor to visit ASAP.

You need to speak to her GP to get end of life meds in place - they will help to relieve discomfort both physical and mental.

If your relative is not drinking very much you will see that their lips get dry and flaky. You need a saliva replacement gel (GP can advise) you just gently clean around the inside.of their mouth, and apply the gel to the inside.of their lips /cheeks/ tongue. It's just to keep things that should be moist, moist.

Don't worry about involving their GP, they won't make them go to hospital or anything.

My father was as you describe ( bed bound , incontinent , not knowing any of us , spoon fed puréed food and drinking thickened drinks from a sippy cup )

He could have carried on like that for ages ( and he would have hated it , if he’d known how he was living , no dignity left , sadly )

Luckily ( and it’s not easy to say that ) he got a chest infection and the Dr advised us he would not recommend treatment , he went on to the end of life care , with syringe driver for meds , and the previously mentioned mouth care , from then , it took about 5 days

He died in his own room at the care home , in his own pyjamas as calmly as was possible

My dad (86) passed away last October he had Alzheimer's, Dementia and renal failure.

Had he only had the Alzheimer's and dementia he maybe would have continued for a month or so on just sips of puréed food and water, however, when his kidneys eventually failed his body wasn't holding onto the smallest sips of fluid and from then it took a couple of days for him to pass.

Mouth care is vital, the care staff were providing good care when they were cleaning her teeth.

You need to meet with her GP and complete an end of life pathways plan so that everyone is clear on what is to happen. I made it clear I wanted DM to have no intervention but to be kept comfortable and pain free. She lost lots of weight over six months towards the end but once she stopped eating completely and became bed bound it took about two weeks and was very calm and peaceful. We would try to encourage her to eat and drink and she only had the occasional spoon of yoghurt. She wouldn’t even let us use mouth swabs at times.
thinking of you during this difficult time. Contact the GP and get them to advise and help to make this time as comfortable as possible.

My mum stopped eating and drinking for three whole days and Dr's said death was imminent. She then drank a beaker of squash and a teaspoon of yoghurt and carried on like this for another 7 months....mostly fasting but odd mouthfuls and sips. It was the most traumatic time. Helplessly watching. Sorry for what you are going through.

Find someone sensible and kind at the GP practice and ask for as much support as possible. Whatever you do avoid anyone who tries to persuade you to prolong her life. It's just cruel but sadly there are those that will