Stopping eating then starting again - can we find a kinder way?

[calling in miracles]

hello,
thank you all for being here. I'm new to posting but nit new to watching and reading and being grateful for the shared experience. I'm at my wits end after 7 years with mum, 5 years of her in care, 10 months now on "end of life" care now. She stopped eating for 12 full days a few weeks back ( still sipped some water tho..). I thought this is it and dropped everything to go (I'm only child and only person who visits still) - yet now she is 5 days into back eating. I cant handle this "near death" then back to endless months process any more-we've done it so many times - its just too gruelling for me... and yet here we are! it feels awful for her too- to nearly go to peace- then come back into life, as the care home insists on keeping trying to feed her- is that right? It seems if she refused food for 12 days as her choice/ the diseases progression we should honour that? they won't though and say they have to keep trying and so keep putting spoons of blended puree there every meal- this seems cruel and endless.
any helpful experience? thank you so much
she is nearly skeletal, cant talk or move any more. can we support her in going back to grace in some way?

 

[canary]

Hello @calling in miracles and welcome to Talking Point.

This roller coaster of stopping eating and being told that they at end of life, only for them to perk up and start eating again is more common with dementia than you might think. It happened three times with mum and once with my MIL. My MIL was in hospital following a spinal fracture and she was put on the Liverpool pathway so had nil by mouth and everyone came to say goodbye, but after a week it was obvious that she was improving again and was taken off this pathway.

When someone dies from dementia they do not starve to death - they stop eating because the body is closing down and they are already dying. Offering food will not change this outcome.

Because the body is closing down slowly over days and weeks this often plateaus and then they start eating again. Since my MIL died (about 12 years ago now) the Liverpool pathway is no longer used and the advice is to offer food, but not to be concerned if it is refused,

I well remember this stage. You get so you do not know whether you are coming or going. When mum finally died I had got so used to this roller coaster I kept expecting her to perk up again , right up to the end....

Eventually it will be over.
((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))

 

[Grannie G]

Food and fluid has to be offered otherwise it can be seen as being withheld. It`s not ideal and very difficult to experience and I sympathise with anyone who wishes the struggle would end.

 

[Banjomansmate]

I wasn’t there but I was told that during The Banjoman’s last few days in his care home his family were complaining that he wasn’t being given any food or drinks (he was semi comatose) and a carer said to them “Has he asked for anything to eat?” to which the answer was “No, he can’t “. The carer then replied “If he cannot ask for it then we cannot force him to eat”.

 

[Jaded'n'faded]

I think most of us have experienced a period of illness where someone kept telling us, 'You need to eat to keep your strength up!' etc, etc. And most will have thought, 'Just go away and leave me alone! If I wanted something to eat I would say so! Let me sleep!'

Applying that to this situation, it does sound like your mum is at end of life, or certainly near it. I don't think my mum ate much in the last year of her life, though she was still active and mobile. We couldn't understand how she kept going without nourishment but she did! In her last few months she just started to close down - stayed mostly in a chair, could still speak reasonably but didn't unless you asked her something, slept more and of course, stopped eating. It felt like I was watching the process of death in slow motion. I saw her a few days before she died and she was definitely a bit 'off colour' though nothing very specific. She just seemed.... diminished in every way. She died one morning and was found in bed, but sitting up looking out of the window. A carer had had a conversation with her a couple of hours earier.

I suppose that's about as good as it gets. There was no purpose or quality to her life in those last few years, yet I had to just watch it all unfolding - a slow death with no dignity (in my opinion.) I think I'd be like you and would want the carer to not try very hard with the feeding. (They do have to go through the motions, obviously.)

I hope your mum finds her peace soon - I know the agony of watching and waiting.

 

[Roman223]

Hello @calling in miracles and welcome to Talking Point.

This roller coaster of stopping eating and being told that they at end of life, only for them to perk up and start eating again is more common with dementia than you might think. It happened three times with mum and once with my MIL. My MIL was in hospital following a spinal fracture and she was put on the Liverpool pathway so had nil by mouth and everyone came to say goodbye, but after a week it was obvious that she was improving again and was taken off this pathway.

When someone dies from dementia they do not starve to death - they stop eating because the body is closing down and they are already dying. Offering food will not change this outcome.

Because the body is closing down slowly over days and weeks this often plateaus and then they start eating again. Since my MIL died (about 12 years ago now) the Liverpool pathway is no longer used and the advice is to offer food, but not to be concerned if it is refused,

I well remember this stage. You get so you do not know whether you are coming or going. When mum finally died I had got so used to this roller coaster I kept expecting her to perk up again , right up to the end....

Eventually it will be over.
((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))

Hello Canary: It's really interesting to read your post about your mum and stopping and starting eating. My mum is on end of life and all week she has not been eating and drinking very little. Today I spoke to the hospital and have been informed she has done really well, she has eaten all her meals, and drinks including her purified meals etc. So no matter if she is eating it doesn't change anything? I don't need to build my hopes up? x

 

[canary]

Hello @Roman223

I havent written too much on your thread as even in the final stage dementia can be unpredictable.

When you look at what is happening from the outside it is easy to think that getting them to eat, or not, will change whether they will live, or not. Whereas, actually, though, its the other way around. Whether they are passing away, or rallying for a while, will change their desire to eat. If you try and make them eat when their body is closing down it will not keep them alive. Equally, if you withhold food when this shutting down process stops for a while, it wont make the body shut down more (its also not ethical to withhold food if they ant to eat). So in this sense it doesnt change anything. I hope that makes sense.

It sounds like your mum has rallied for a while and the body has stopped shutting down, so she now wants to eat. Im afraid that there is no knowing how long this plateau will last. This is why this final stage can be such a roller coaster

Keep strong
xxx

 

[Roman223]

Hello @Roman223

I havent written too much on your thread as even in the final stage dementia can be unpredictable.

When you look at what is happening from the outside it is easy to think that getting them to eat, or not, will change whether they will live, or not. Whereas, actually, though, its the other way around. Whether they are passing away, or rallying for a while, will change their desire to eat. If you try and make them eat when their body is closing down it will not keep them alive. Equally, if you withhold food when this shutting down process stops for a while, it wont make the body shut down more (its also not ethical to withhold food if they ant to eat). So in this sense it doesnt change anything. I hope that makes sense.

It sounds like your mum has rallied for a while and the body has stopped shutting down, so she now wants to eat. Im afraid that there is no knowing how long this plateau will last. This is why this final stage can be such a roller coaster

Keep strong
xxx

Hello Canary: Thank you for explaining this. It is such a complex matter and is so hard to comprehend. I can't even believe that I am actually saying "End of life" where mum is concerned! It is such an 'Emotional roller coaster". As I have said before in previous posts, I don't think I will look at life in the same way again. x