Mum has had dementia for about 6 years now and been in her nursing home for over 3 of them. She is in the advanced stages now, she is doubly incontinent, cannot speak properly or make herself understood, doesn't understand others and has been losing interest in eating for a while now. Some of the other residents in the nursing home seem to be quite happy in their own little worlds but not mum, she is not a happy dementia patient. She is unrecognisable as the bright, happy, vibrant person she used to be. Now she is unhappy, sad, depressed, upset, tearful. The staff in the nursing home spoke to me a while back about the fact that she is losing weight and suggested supplement milkshakes. I discussed this with the rest of the family and we decided against doing this as it would just be prolonging the torment she is in. If there was the tiniest chance of her getting better then of course I would agree with trying to build her up, but she isn't going to get better, she is just going to continue to sit there sad, unhappy, confused, unable to communicate, trapped in the prison of dementia. Not eating is part of the process of the illness, I know that and in my heart of hearts I know that I have made the right decision for her, I know her better than anyone and I know that she would not want to be like she is. It breaks my heart to see her like this but it feels so counter intuitive telling the nursing home not to supplement her diet, I feel like they are all judging me when I visit mum and feel very alone. Is anyone else in this sort of situation? Sorry to ramble on, it would just be good to hear from anyone who has an inkling of how it feels. Thanks for listening.
Counter intuitive emotions
- Thread starter Gordy
- Start date
Gordy, I'm not there yet with OH but I wanted to let you know someone had heard. I'm sorry you feel that staff are judging you, that's sad. I often say, "What's the point?" I agree with you that there is no point in this situation. You're sure that's what your mum would want, so I'd stick with it. Hope that is some help.
Dad had the losing interest and understanding stage ...the what and why of food. He was declining and food intake was very hit and miss. However he did have supplements in his NH...I viewed it more that it would not prolong his life with the dementia...that was already on a path to end of life and a few supplements and meagre mouthful of food would not make any difference to changing the timescale or building him up...he was passed that... but that if he showed any interest he should be offered. He was encouraged by us all but not constantly...we read his body language to gauge if interested or not. Eventually he refused everything.This stage lasted a good few months. However I completely understand your decision and everyone with dementia is different.
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Thank you so much for your reply, it really does help to know that someone out there understands how **** it feels. Thank you x
I think that is partly the problem, everyone is different and until you do/have had a family member with dementia, you have no idea how you would feel, cope or react. Thank you for your understanding x
Hello there. My mum is almost identical in description to yours. She just sleeps and has gotten so thin, NH asked GP to visit today. Unfortunately I wasnt there as was at the hospital. The one day I cannot be there! The nurse suggested supplement drinks but he said no. He has also taken her off two of her meds as they wont help her now. He said all they & we can give her is "lots of TLC". My brother and I love her so very, very much but seeing her like this is dreadful. The GP was apparently very kind and patient but she didnt wake up at all during hi s visit. We believe he has made the right, compassionate decision. You have my sympathy. Isn't this an awful, cruel thing? Sending Love and Hugs to you. It tears us apart, this wicked disease. J xxxxxx
Hello @Gordy
My mum also is in a similar situation to yours. She in unable to do anything for herself and is miserably unhappy most of the time. She barely eats and weighs less than six stone. Yet, she manages to shout out 'help, help' and 'hello, hello' for hours every day. It's pretty much her only activity and she doesn't expect any response - often continuing even when I'm sitting with her and giving her all the attention I can.
Anyway.....to get to your point.....at her care plan review the issue of antibiotics arose. I noticed that her care plan said she was to be treated with antibiotics whenever the need arose. I questioned this as I really don't want her to be kept alive 'artificially', as she is so very unhappy. In the end I spoke to the GP and agreed she'd be treated for comfort, eg if she has a UTI and is uncomfortable, but that they would not give repeated and strong doses if she had what he called 'an overwhelming infection' like pneumonia.
I was happy with this outcome but like you, I felt that the staff were shocked that I did not argue for all possible means to be used to keep mum going
I think perhaps it's useful to look at it from their point of view. They have to regard every life as precious in order to do their very difficult jobs. Of course I agree with this, my mum could not be more precious to me, but like you with your mum, I don't want her suffering to be prolonged.
I hope this makes some sort of sense...... I feel guilty saying it even on TP
I hope your mum is as comfortable as she can be.
(((Hugs))) to you.
Lindy xx
My mum also is in a similar situation to yours. She in unable to do anything for herself and is miserably unhappy most of the time. She barely eats and weighs less than six stone. Yet, she manages to shout out 'help, help' and 'hello, hello' for hours every day. It's pretty much her only activity and she doesn't expect any response - often continuing even when I'm sitting with her and giving her all the attention I can.
Anyway.....to get to your point.....at her care plan review the issue of antibiotics arose. I noticed that her care plan said she was to be treated with antibiotics whenever the need arose. I questioned this as I really don't want her to be kept alive 'artificially', as she is so very unhappy. In the end I spoke to the GP and agreed she'd be treated for comfort, eg if she has a UTI and is uncomfortable, but that they would not give repeated and strong doses if she had what he called 'an overwhelming infection' like pneumonia.
I was happy with this outcome but like you, I felt that the staff were shocked that I did not argue for all possible means to be used to keep mum going
I think perhaps it's useful to look at it from their point of view. They have to regard every life as precious in order to do their very difficult jobs. Of course I agree with this, my mum could not be more precious to me, but like you with your mum, I don't want her suffering to be prolonged.I hope this makes some sort of sense...... I feel guilty saying it even on TP
I hope your mum is as comfortable as she can be.
(((Hugs))) to you.
Lindy xx
Don't feel guilty...your thoughts are kind for your mum. I had to make an end of life decision for dad to stop iv fluids and antibiotics in hospital knowing he would not maintain fluids on his own so I knew full well the consequences of my decision. However it was the kindest decision not to prolong his end of life...back to the familiarity and staff in his NH where a week later after being kept comfortable and pain free he died. I don't regret my decision...then or now.Hello @Gordy
My mum also is in a similar situation to yours. She in unable to do anything for herself and is miserably unhappy most of the time. She barely eats and weighs less than six stone. Yet, she manages to shout out 'help, help' and 'hello, hello' for hours every day. It's pretty much her only activity and she doesn't expect any response - often continuing even when I'm sitting with her and giving her all the attention I can.
Anyway.....to get to your point.....at her care plan review the issue of antibiotics arose. I noticed that her care plan said she was to be treated with antibiotics whenever the need arose. I questioned this as I really don't want her to be kept alive 'artificially', as she is so very unhappy. In the end I spoke to the GP and agreed she'd be treated for comfort, eg if she has a UTI and is uncomfortable, but that they would not give repeated and strong doses if she had what he called 'an overwhelming infection' like pneumonia.
I was happy with this outcome but like you, I felt that the staff were shocked that I did not argue for all possible means to be used to keep mum going
I hope this makes some sort of sense...... I feel guilty saying it even on TP
I hope your mum is as comfortable as she can be.
(((Hugs))) to you.
Lindy xx
Thank you @love.dad.but.. that's very helpful.
My condolences on the loss of your dad....I'm pleased that he was kept comfortable and pain free xx
Oh dear @Gordy I get what you are saying and I agree with you. It is so hard and I am in a similar position. My dad, 88 years old has advanced alzhiemers and terminal oesophagul cancer and here I am feeding him up to give him some strength. I am doing well according to the consultant as he has put on about 10 pounds since his last appointment. Dad drinks 7 or 8 of these shakes every day so they do work and he drinks soup with cream in and this morning he had ice cream with cream on top for breakfast. So why do I feel that this is pointless, dad would not eat if I didn't put on a plate and give it to him. He says he is not hungry or that he is full up already, probably because he has a big tumour filling half of his stomach. This makes me feel depressed and guilty but still I give it to him.
I feel like I am feeding him up so he will last longer but what is the point of that. At the moment he is pain free and quiet happy and completely oblivious of the fact that he is ill. It is a fact that the longer he lasts the worse it will be for him in the end so every night I pray that he will pass away in his sleep. The torment of this is killing me while he is as happy as Larry. They are talking now of a possible course of palliative radiotherapy some time soon and possible blood transfusions if he becomes anaemic and morphine patches for pain control. It is all becoming a bit too much to bear. Dad still functions in his own home because I devote all my time to him. He is no trouble really, he is very pleasant and a real gentleman. He is also a walking skeleton and all he wants to do is sit in his chair and drink milk shakes. I don't think he has the strength to do much more than that as today's hospital visit really took it out of him. He does still ask for the ensure milk shakes because he likes them and they are nice and cold for his throat but what the hell am I building him up for. I will keep giving them to him as long as he still wants them but it is torture watching him like this.
It is awful this disease. Every morning I go down dads and often he is not up yet and when I go in all the blinds are closed and I know he is still in bed and then he calls out to see if it is me and I don't know whether I am glad or whether I want to cry.
Oh @Duggies-girl I'm so sorry
You are doing so well for your dad, and while he enjoys the ensures it seems right to give them to him.What literally made me cry out in sympathy was your last sentence. When I was caring for mum at home I had so many mornings like that, when I'd hear her voice and not know how to feel....
Sending you lots of (((hugs)))
Lindy xx
Oh @Duggies-girl I'm so sorry
What literally made me cry out in sympathy was your last sentence. When I was caring for mum at home I had so many mornings like that, when I'd hear her voice and not know how to feel....
Sending you lots of (((hugs)))
Lindy xx
Thank you @Lindy50 I have made my self cry here reading my own post. I think today's hospital appointment really got to me. I can't see how dad can go on like it and they are talking of treatments in two or three months time. He is only on palliative care but is so frail and i have to guide him everywhere because he doesn't know where he is going or why. I have had to remind him why he has an appointment then the doctor asked him if he knew why he was there. He knew it was for a check up but not why. I don't usually get emotional but today was a bit much and probably the heat has contributed to it as well.
Yes I will continue with the ensure and the ice cream with cream on top, it's all that dad has to look forward to now.
Bless you @Duggies-girl , you are having such a difficult time. What a wonderful daughter you are xxxx
I don't mean to sound trite but I think we could all use a group hug. Tears at all these posts. You are all so loving and brave. Oh what this dreadful, cruel illness does to us. Sending much Love to you all xxxxxx
I second this!!
One of the most difficult and bravest things we all have to is let go when the time is right. What is the point in prolonging a life of suffering?
Well done @Gordy for making this brave decision. No one should judge you for doing the right thing for your mum.
Gordy, I would have felt and done exactly the same, though the situation never arose with my mother. She was in much the same state as you say your poor mother was in and I would have felt very strongly that trying to keep her going just for the sake of it, when she was in such a pitiful state with zero quality of life, would have been wrong.
I would hope that the care home staff are not judging you, it would seem very wrong if so. However I know there are people who do want absolutely everything possible done to keep a loved one going, no matter how pitiful the state they're in, so maybe they're more accustomed to this sort of attitude.
The way I see it, the kindest thing we can do for a loved one in the advanced stages of dementia, may be to let nature take its course. But I am aware that other people do sometimes find this attitude callous or uncaring, when in fact it's just the opposite. I knew very well that my mother's former, pre dementia self, if she'd ever been able to foresee what she'd become, would have been the first to say, 'For heaven's sake, just let me go.'
I would hope that the care home staff are not judging you, it would seem very wrong if so. However I know there are people who do want absolutely everything possible done to keep a loved one going, no matter how pitiful the state they're in, so maybe they're more accustomed to this sort of attitude.
The way I see it, the kindest thing we can do for a loved one in the advanced stages of dementia, may be to let nature take its course. But I am aware that other people do sometimes find this attitude callous or uncaring, when in fact it's just the opposite. I knew very well that my mother's former, pre dementia self, if she'd ever been able to foresee what she'd become, would have been the first to say, 'For heaven's sake, just let me go.'
@Witzend Thank you for posting this. Your final paragraph in particular resonated with me. A few years ago, mum witnessed her sister in exactly the same state as she finds herself in now. Mum said "Oh God, I hope I never get like this". And yet here she is. I think her words said it all. She would hate this and, being the loving mum she still is, she would be horrifed at the pain my brother and I feel. My love to everyone in this dreadful, dreadful situation. x
Such heart breaking posts, and so honest. @Gordy, I completely agree with your decision, I believe it is the hardest, but absolutely the right and loving thing to do in your mum's interests, and I suspect the same decision will arise for me in the future. My mum already is reluctant to eat, but is still fairly independent. My husband and I have just been discussing your posts and want to send you all our support and love.
Totally agree...and I felt what I saw in dad towards end of life was that he very firmly made his wishes known that he had enough it was time to go even through his dementia ...so he was letting mind his body slip away
