Refusing to eat and drink - timescale

[Mellow]

Mum went into a care home during Covid and had what seems to be a rapid decline in her condition. She has mixed dementia and I think now we hadn't realised how advanced it was (she was previously at home with carers 4x a day for a few minutes). She always seemed happy in herself and I think we missed signs of how bad things were getting. We think that having 24 hour care meant her advanced condition was picked up more easily there.

We couldn't visit because of Covid and she was admitted to hospital with dehydration after a few weeks, refusing to eat and drink (she can swallow, she has just opted not to). The 2nd time she was in hospital they consulted with us and it was agreed not to keep putting her on drips because it will be prolonging the inevitable. She is very confused and drowsy most of the time.

We are now allowed to visit her in the home one at a time, which is reassuring because although she is very weak and is just on her back in bed, we can see she is not aware of what's going on and doesn't seem to be in pain at the moment. She mostly opens her eyes and is glazed but occasionally seems to have a minute or 2 where he tries to talk and will smile or say random phrases. IV fluids were stopped 8 days ago and the home have a duty to offer food and drink. She is occasionally having 25 - 50ml of a drink per day, but it seems this is to make her mouth more comfortable when she is more awake and not thirst as such. Right now she is stable. The doctors and staff says she doesn't have long, but how much longer can she go on like this?

 

[canary]

Hello @Mellow
Im so sorry to hear about your mum. You have entered the twilight zone of waiting, and it is hard. People with dementia seem to cling to life and this stage can last longer than you ever expected. My mum lasted 17 days with absolutely no food or fluid at all, but most people do not last this long. Your mums body is slowly closing down, and has been for a while now. As part of this closing down they stop eating and drinking because their body can no longer process it. Lots of people find the way they stop eating and drinking distressing as they think that they are starving themselves to death, but it is not true - they stop eating and drinking because they are already dying.

Im glad that you are able to visit her. Now is the time to say the important things - I love you, thank you, Im sorry. Even if she seems unconscious, she will still be able to hear you as hearing is the last thing to go. Talk to her, read to her, play her favourite music. The staff will know when she is getting to the last hours as there are physical changes that happen - for example the breathing changes so that there are often gaps between breaths (Cheyne Stokes breathing).

Remember to eat and sleep
((((((((((((((((((((((((((((hugs)))))))))))))))))

 

[Mellow]

Hello @Mellow
Im so sorry to hear about your mum. You have entered the twilight zone of waiting, and it is hard. People with dementia seem to cling to life and this stage can last longer than you ever expected. My mum lasted 17 days with absolutely no food or fluid at all, but most people do not last this long. Your mums body is slowly closing down, and has been for a while now. As part of this closing down they stop eating and drinking because their body can no longer process it. Lots of people find the way they stop eating and drinking distressing as they think that they are starving themselves to death, but it is not true - they stop eating and drinking because they are already dying.

Im glad that you are able to visit her. Now is the time to say the important things - I love you, thank you, Im sorry. Even if she seems unconscious, she will still be able to hear you as hearing is the last thing to go. Talk to her, read to her, play her favourite music. The staff will know when she is getting to the last hours as there are physical changes that happen - for example the breathing changes so that there are often gaps between breaths (Cheyne Stokes breathing).

Remember to eat and sleep
((((((((((((((((((((((((((((hugs)))))))))))))))))

Thanks for the reply and the kind words. Yes, it is good we can visit, we are really grateful because we know there are lots of families who are separated from their loved ones. We can only go one at a time and we all had a cry when we first saw her because she has physically changed so much in a very short amount of time. She has liked listening to music and we see her smile or try to sing along. She has had sips of fluid but it's more because her mouth is very dry and when she is more awake this begins to really bother her. The home have encouraged us to use a baby toothbrush. She has been showing signs of pain - grimacing and groaning - and she is needing injections more often but her breathing is unaffected. It's been a tough week - you got it right with the word twilight - cherishing every moment we can be there but wanting things to be over for her sake because we don't want her to be in any pain.

 

[canary]

They should be able to keep her comfortable and pain free. When the injections were not enough mum was put on a syringe driver which administers the pain killers and other drugs constantly via a small needle under the skin. After she was started on that mum did not show any sign of pain.

 

[Splashing About]

Hi @Mellow
Mum was in a similar position but went from eating and drinking absolutely nothing (3 days) to taking sips of milk and water. She would then take some puddings like ice-cream or custard but only small amounts. She lasted like this (basically on fortified milks) for 7 months. She lost huge amounts of weight and became bed bound very quickly. A really traumatic thing to witness

 

[garfield3]

Hello @Mellow

I‘m so glad you can visit. I hope it’ll give you comfort knowing you did your best and you could see her. Mum lasted 4 days in the end after a bit of a cold.

Stay safe. Sending strength at this very difficult time . (((((hug)))))

 

[Beth24]

It's a very sad time for you and your family, and it's also your last act of love and in some part more memories to treasure, knowing that you have done everything you could for them x