End of life….

[JanBWiltshire]

My mother has deteriorated again quite suddenly and I suspect she has had another seizure. She didn’t recognise me or my brother one day last week and since then has had limited speech, no appetite for solid food and is asleep most of the time. She nods off of you are talking And literally answers yes or no in a very weary way when asked a question.

Incontinent and unable to eat solids - even liquids are difficult as she easily chokes on thin liquids.

She is in a care home and the doctor has said she is at end of life and palliative care needs to be given.

Of course, it is hard to predict how long she has and no one is prepared to say - has anyone else been through this stage and can offer advice? She has lost a lot of weight, is now 6 stone and very weak. I feel she has only a few weeks left but who knows?

 

[Gosling]

Hello @JanBWiltshire and I am sorry to read of your mother's recent health deterioration. I had the same with my Mum, and was put on end of life care for about six weeks before she passed last September. BUT, and it's a big but, no one can say if your mother is near because every person with dementia has a different journey. It can be surprising how long the body can go on, even without the person taking water or any food at all.
The important thing at this stage is to ensure your mother is comfortable and pain free. This is the essence of end of life care. Your mother will be offered food and drink, but if she refuses or doesn't want, then nothing will be 'forced'.
Finally, do make every day count, as it might be the last, because you just never know with this cruel illness. Wishing you strength.

 

[JanBWiltshire]

Hello @JanBWiltshire and I am sorry to read of your mother's recent health deterioration. I had the same with my Mum, and was put on end of life care for about six weeks before she passed last September. BUT, and it's a big but, no one can say if your mother is near because every person with dementia has a different journey. It can be surprising how long the body can go on, even without the person taking water or any food at all.
The important thing at this stage is to ensure your mother is comfortable and pain free. This is the essence of end of life care. Your mother will be offered food and drink, but if she refuses or doesn't want, then nothing will be 'forced'.
Finally, do make every day count, as it might be the last, because you just never know with this cruel illness. Wishing you strength.

Thank you so much. Yes, you are right about making every day count and I visit twice a day and treat each one as potentially the last.

Your reply and support is much appreciated.

 

[Jooles55]

My mother has deteriorated again quite suddenly and I suspect she has had another seizure. She didn’t recognise me or my brother one day last week and since then has had limited speech, no appetite for solid food and is asleep most of the time. She nods off of you are talking And literally answers yes or no in a very weary way when asked a question.

Incontinent and unable to eat solids - even liquids are difficult as she easily chokes on thin liquids.

She is in a care home and the doctor has said she is at end of life and palliative care needs to be given.

Of course, it is hard to predict how long she has and no one is prepared to say - has anyone else been through this stage and can offer advice? She has lost a lot of weight, is now 6 stone and very weak. I feel she has only a few weeks left but who knows?

I am sorry to hear this. My FIL was out in end of life in December for the same reasons, he lived for exactly a month, his family were all with him and he passed peacefully. I wish the same for you

 

[Bettysue]

I can only tell you of my experience. My partner developed a mouth infection in late February. From then on he took only a little puréed food or soup and eventually we had to decide not to offer him food as he would pouch it or choke. For a whole week before he passed away in mid March he had neither food nor liquid. I don’t think he knew anything of that last week but his daughter and I sat with him 24/7 as we wanted to be there and to comfort him as best we could. In the last 48 hours we asked for the end of life meds to be given as he became more agitated which was distressing to witness. It was a very difficult week but he passed peacefully in the end. We felt privileged to have been able to be with him at the end.

 

[JanBWiltshire]

I can only tell you of my experience. My partner developed a mouth infection in late February. From then on he took only a little puréed food or soup and eventually we had to decide not to offer him food as he would pouch it or choke. For a whole week before he passed away in mid March he had neither food nor liquid. I don’t think he knew anything of that last week but his daughter and I sat with him 24/7 as we wanted to be there and to comfort him as best we could. In the last 48 hours we asked for the end of life meds to be given as he became more agitated which was distressing to witness. It was a very difficult week but he passed peacefully in the end. We felt privileged to have been able to be with him at the end.

Firstly, so sorry to hear of your loss - you did all you could at the end.

it is interesting to hear about a mouth infection because I think my mother has a sore mouth - she seems happy having cool liquids (with thickener) but can’t seem to cope with solid food At all. Takes her ages to chew even a small piece of soft chicken and she looks uncomfortable.

Thank you for passing on your experience, much appreciated.

 

[canary]

My experience is that in mums final 12months she went through a series of declines followed by rallies. I was told three times that she was at end of life (once after pneumonia, once with oral thrush and once after a stroke) as each time she stopped eating and drinking and was declining. However, each time she rallied and started eating and drinking again. It is not uncommon in dementia and its what makes it so hard to know when the end will come. I have heard on this forum about someone who was said to be at end of life for two years! Eventually, of course, mum declined and did not rally, but we had been on that terrible roller coaster for a year.

 

[JanBWiltshire]

My experience is that in mums final 12months she went through a series of declines followed by rallies. I was told three times that she was at end of life (once after pneumonia, once with oral thrush and once after a stroke) as each time she stopped eating and drinking and was declining. However, each time she rallied and started eating and drinking again. It is not uncommon in dementia and its what makes it so hard to know when the end will come. I have heard on this forum about someone who was said to be at end of life for two years! Eventually, of course, mum declined and did not rally, but we had been on that terrible roller coaster for a year.

Thank you for your reply. My mother seems to be generally declining, eating and drinking very little. she has only been saying yes and no but today her demeanour changed and she was quite aggressive, especially towards me. Quite unnerving as she hasn’t been like that since her last seizure 18months ago. I was quite amazed. She also told the cared she didn’t ever want to see food again in a very angry way. Now I wonder whether she is going to miraculously recover!!!

 

[JanBWiltshire]

Well, this is amazing….after almost two weeks of severe deterioration, not eating, only sipping drinks, only speaking one or two words and sleeping constantly a REMARKABLE rally! She was talking and saying things in a way I haven’t seen for months and remembering a long lost cousin, too from 70 years ago. Also thought she had twin boys (she doesn’t!)

Completely staggered as she seemed close to death yesterday.

My brother visited today as we all felt she was coming to the end! I’m confused.

 

[canary]

Well, this is amazing….after almost two weeks of severe deterioration, not eating, only sipping drinks, only speaking one or two words and sleeping constantly a REMARKABLE rally! She was talking and saying things in a way I haven’t seen for months and remembering a long lost cousin, too from 70 years ago. Also thought she had twin boys (she doesn’t!)

Completely staggered as she seemed close to death yesterday.

My brother visited today as we all felt she was coming to the end! I’m confused.

Yes @JanBWiltshire , this is the sort of rally mum had. It seemed unbelievable to me too.

 

[luggy]

Well, this is amazing….after almost two weeks of severe deterioration, not eating, only sipping drinks, only speaking one or two words and sleeping constantly a REMARKABLE rally! She was talking and saying things in a way I haven’t seen for months and remembering a long lost cousin, too from 70 years ago. Also thought she had twin boys (she doesn’t!)

Completely staggered as she seemed close to death yesterday.

My brother visited today as we all felt she was coming to the end! I’m confused.

So sorry to hear about your mum's predicament. It all sounds very familiar to me. A journey we've been on for over 2 years now. Decline, EOL & rallying is exhausting, but you're not alone and many of us can identify with your situation. It's not easy, but my advice would be to try and carry on with your own life as best as you can. What will be, will be. My thoughts are with you xx

 

[JanBWiltshire]

Yes @JanBWiltshire , this is the sort of rally mum had. It seemed unbelievable to me too.

Thank you….makes me feel better when I know this is familiar. I have just cancelled a holiday next month! This yo-yo has been going on for about 3 years.

 

[JanBWiltshire]

So sorry to hear about your mum's predicament. It all sounds very familiar to me. A journey we've been on for over 2 years now. Decline, EOL & rallying is exhausting, but you're not alone and many of us can identify with your situation. It's not easy, but my advice would be to try and carry on with your own life as best as you can. What will be, will be. My thoughts are with you xx

Thank you! It seems this is part of this nightmare journey. I’ve just cancelled my holiday, thinking this was “it”. Honestly, it really is wearing. I’ve been in twice a day the last two weeks - it was lovely to see her seemingly come out of the dreadful state she has been in but I’m now wondering how long until the next roller coaster! As you say, I must make my own life as best I can.