Hi there my aunt who is 90 and has alzheimers is in a nursing home many miles from us. We had a phone call last thursday from the matron of said care home to ask us to prepare for sad news over the weekend as my aunt was very poorly and not expected to last the weekend.obviously we are very saddened by this. My lovely proud aunt a week later is still in palative, end of life care whic we presumed to mean she was not being fed or given water we got really upset last week that we thought our aunt had spent her last weekend in this lovely but often cruel world we are on holiday just waiting for news we hate to keep phoning the home. Wondering if we shoukd cut our holiday short or wil we have time to go and say our goodbyes when we get home. This is all very new and scary for us is the end of life stage go on for longer its very distressing for us to think that our aunt has gone a whole week with no food or water is it just her sheer determination to hold onto life i hate to think of her suffering being prolonged. Any advice out there for us please?
can someone give us some advice
- Thread starter msf
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Welcome to Talking Point although I`m very sorry for the circumstances which have brought you here.
If you are happy with the care your aunt has received while she has been in residential care, I wouldn`t worry too much about her receiving palliative care.
It might help you to read a little more about it if you haven`t already.
http://www.ncpc.org.uk/palliative-care-explained
My husband was on palliative care and refused food and water during his final time. Even so he was given pain relief and his mouth was kept moisturised and he was observed continuously to make sure he was comfortable.
I hope this helps. It`s dreadful when you can`t get to the bedside. You tend to imagine the worst.
Welcome to Talking Point although I`m very sorry for the circumstances which have brought you here.
If you are happy with the care your aunt has received while she has been in residential care, I wouldn`t worry too much about her receiving palliative care.
It might help you to read a little more about it if you haven`t already.
http://www.ncpc.org.uk/palliative-care-explained
My husband was on palliative care and refused food and water during his final time. Even so he was given pain relief and his mouth was kept moisturised and he was observed continuously to make sure he was comfortable.
I hope this helps. It`s dreadful when you can`t get to the bedside. You tend to imagine the worst.
Hello, first of all...what will be - will be. So no don't come back, enjoy the rest of your holidays, 'cos I bet that's what Auntie would say.
Secondly: Palliative are does not mean denied food ar water, it means that there is no proactive action being taken and that your Aunt is being kept comfortable. She will be having pain relief if required, turned if needed and kept company. She may be on IV fluids if it is a Nursing Home and she will be having mouth care where her lips are moistened and, if she cannot swallow, she will be given swabs to suck. If Auntie wants to try food, it will be offered. And most of all, she will not be alone.
This final stage can take quite some time and even a temporary recovery can happen. I have been on vigil twice for Mum and still the heart is strong.
Only you know if you will not be able to forgive yourselves, therefore you are the only ones to make the decision...... I would keep in touch daily but not plan to return.
Secondly: Palliative are does not mean denied food ar water, it means that there is no proactive action being taken and that your Aunt is being kept comfortable. She will be having pain relief if required, turned if needed and kept company. She may be on IV fluids if it is a Nursing Home and she will be having mouth care where her lips are moistened and, if she cannot swallow, she will be given swabs to suck. If Auntie wants to try food, it will be offered. And most of all, she will not be alone.
This final stage can take quite some time and even a temporary recovery can happen. I have been on vigil twice for Mum and still the heart is strong.
Only you know if you will not be able to forgive yourselves, therefore you are the only ones to make the decision...... I would keep in touch daily but not plan to return.
I don't think anybody will be actually withholding food and water. It is very likely at this stage that she does not want it. I have witnessed this with an aunt who was receiving palliative care only - the CH staff continued to offer drinks and light food like yoghurt but she simply did not want any of it - she would close her mouth and turn her head away. I think it is the case at this stage that their bodies no longer need it and in fact can't cope with it.
I sat with my aunt a lot during her last days. She did not seem to be in any discomfort and was sleeping most of the time. It was all very peaceful. I do hope your aunt will be the same - it is always a very upsetting time.
Thank you
Thank you for your words I suppose I am asking the impossible but how long before we lose her , I think because the matron saying we were going to lose her last week and a week later she is still holding on how long was your aunt at This final stage, I gained comfort from The fact your aunt slept for much of this time .
Thank you for your words I suppose I am asking the impossible but how long before we lose her , I think because the matron saying we were going to lose her last week and a week later she is still holding on how long was your aunt at This final stage, I gained comfort from The fact your aunt slept for much of this time .
Thank you
Thank you for your kind words. I am quite shocked by the fact that you have been through this twice of course glad your loved one has had the determination to rally round. If it's not too painful how long in between were these two reprieve are we talking days months etc I was thinking we would have to prepare losing our aunt in hours or days . Msf
Thank you for your kind words. I am quite shocked by the fact that you have been through this twice of course glad your loved one has had the determination to rally round. If it's not too painful how long in between were these two reprieve are we talking days months etc I was thinking we would have to prepare losing our aunt in hours or days . Msf
I am sorry your aunt is in the last stages of her life, and sorry that you are going through such a hard time.
If you really want to see her to say goodbye you need to go now. There is no telling how long someone will live, no way of saying they have days or hours or even weeks.
yes, you may see her and she may then live until after the expected end of your holiday. That is a best case scenario. You can live with that, there will be other holidays
If you gamble that she will live until after your holiday and she does not then you do not get a second chance.
So it really isn't a question of saying how long she will live, rather a question of how important is it to you to see her one more time.
I am not intending to sound harsh, please forgive, just putting it how it seems to be.
If you really want to see her to say goodbye you need to go now. There is no telling how long someone will live, no way of saying they have days or hours or even weeks.
yes, you may see her and she may then live until after the expected end of your holiday. That is a best case scenario. You can live with that, there will be other holidays
If you gamble that she will live until after your holiday and she does not then you do not get a second chance.
So it really isn't a question of saying how long she will live, rather a question of how important is it to you to see her one more time.
I am not intending to sound harsh, please forgive, just putting it how it seems to be.
If it is of the slightest comfort to you...twelve months ago, Mum's GP suggested I ask my sister to fly over to say goodbye to Mum since she was most definitely on her final path. Mum is still with us. She eats less than a baby bird most days, she needs to be cajoled into drinking anything, she is doubly incontinent, cannot stand unaided, but for someone with a heart impediment, it still beats strongly.
There is no right or wrong, regarding your return home..... I can only say that I would want my kids to enjoy their holiday.
There is no right or wrong, regarding your return home..... I can only say that I would want my kids to enjoy their holiday.
I think she hung on for about a week, or maybe slightly longer, but she had been ill first with the umpteenth UTI. It certainly was not a very long-drawn out affair, but it is I think impossible to tell. In fact I was just about to leave the house to go and sit with her early one morning, when they phoned to say she had died. It am sure they had not thought it was imminent, or they would have phoned me before.
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Thanks again for responding. We are so confused we have had to learn an awful lot in the last few days on this dignity stripping illness and the real meaning of palative care I suppose what I have gleaned from all of this is that she will let go when she is ready to. It's 4 years today since her husband my uncle died I am hoping he comes to help her make the crossing over to a peaceful and pain free after life. I'll keep you posted thanks again for sparing us the time.
I'm in a similar situation. Mum (nearly 88) has been in care coming up to 3 years and had been eating well until the spring; but after moving from residential to nursing unit in the same home (mainly due to continence issues), her appetite declined and she stopped eating meals in May. She is now refusing almost all solid food - occasionally eats a few small slices of banana, a tiny piece of cheese or a grape, but most days has no food at all. They have been keeping her going with fruit squash, tea and coffee with fortified milk, and a bit of wine (the only thing she still enjoys and might stimulate appetite), but she will often refuse even liquids.
She's lost a shocking amount of weight in the last few weeks, is now about 5 stone, immobile without help (they can get her up with a hoist to sit in a chair and be wheeled to the bathroom), and is having a lot of hallucinations.
Three weeks ago, the nurse contacted me to ask if I "understood" that she was declining, which I took to mean imminently in end stage. I live 100 miles away and normally visit every other weekend, so I went down early and booked into a nearby hotel, psyched up for an indefinite stay. It was a huge emotional stress, thinking this might be the last time I'd see my mum and desperate to connect with her in some way - she still recognises me visually and is able to speak, but I don't think she really knows me any more, which I am finding very upsetting, even though I've been mentally prepared for it for a long time.
But after a terribly poignant long afternoon at her bedside, the next day she was up and dressed in the chair and relatively bright; same the next day. I didn't know whether to carry on staying there or go back home and visit as usual at the weekend. The nurse said she thought mum could be like this for a while, so I went home and came back at the weekend - again, feeling sick with apprehension.
That visit was not so good, as mum was in a very antagonistic mood; but she was at least physically stronger, it seemed, so I went home again - and cried all the way. Made a third visit this Saturday just gone - she's much the same. And I'm in limbo.
I had got into a routine of visiting in a round trip on the same day, and concentrating on just trying to have as pleasant a time with mum as possible - i.e. one in which nothing distressing was said or done. But now the stakes seem so huge that every time I lie awake feeling sick the night before and all the way there, and cry on the way back, because there's so little connection between us now and I'm so desperate to feel some recognition from her each time, in case it's our last.
I spoke to a relative who's a GP, and he says he is constantly amazed at how long people can go on with very little nutrition. It is a terrible emotional wringer, specially after many years of already watching the person you love decline so cruelly from their real self.
She's lost a shocking amount of weight in the last few weeks, is now about 5 stone, immobile without help (they can get her up with a hoist to sit in a chair and be wheeled to the bathroom), and is having a lot of hallucinations.
Three weeks ago, the nurse contacted me to ask if I "understood" that she was declining, which I took to mean imminently in end stage. I live 100 miles away and normally visit every other weekend, so I went down early and booked into a nearby hotel, psyched up for an indefinite stay. It was a huge emotional stress, thinking this might be the last time I'd see my mum and desperate to connect with her in some way - she still recognises me visually and is able to speak, but I don't think she really knows me any more, which I am finding very upsetting, even though I've been mentally prepared for it for a long time.
But after a terribly poignant long afternoon at her bedside, the next day she was up and dressed in the chair and relatively bright; same the next day. I didn't know whether to carry on staying there or go back home and visit as usual at the weekend. The nurse said she thought mum could be like this for a while, so I went home and came back at the weekend - again, feeling sick with apprehension.
That visit was not so good, as mum was in a very antagonistic mood; but she was at least physically stronger, it seemed, so I went home again - and cried all the way. Made a third visit this Saturday just gone - she's much the same. And I'm in limbo.
I had got into a routine of visiting in a round trip on the same day, and concentrating on just trying to have as pleasant a time with mum as possible - i.e. one in which nothing distressing was said or done. But now the stakes seem so huge that every time I lie awake feeling sick the night before and all the way there, and cry on the way back, because there's so little connection between us now and I'm so desperate to feel some recognition from her each time, in case it's our last.
I spoke to a relative who's a GP, and he says he is constantly amazed at how long people can go on with very little nutrition. It is a terrible emotional wringer, specially after many years of already watching the person you love decline so cruelly from their real self.
Sorry, that's probably not a very helpful reply. Just a meditation on shared dilemma.
I guess I'm saying that you might rush back, as I did, and find that the situation is not as imminent as you had feared; equally, I am telling myself that even if I lived locally and popped in every day, the moment might still come when I'm not there and I'll just have to live with that.
What has become clearer to me is that it's probably more of an issue for me than for mum now - she has so little energy to be bothered with anything and my presence doesn't seem to be any particular comfort to her, as it would have been before the dementia took hold. So the heartache in your case might similarly be more for you, having full grasp of the situation, than for your aunt, who is probably unaware.
I'm an only child, and could never imagine not being with mum at the end or her not wanting me to be there; but the dynamics have changed now, and I'm really not sure who she thinks I am or whether I'm irrelevant to her.
As others have said above, it's largely a question of whether you feel you need to spend time with your aunt while you can. Either way, don't beat yourself up if you're not there at the end itself, as this can happen in normal circumstances when we have no advance warning. At least in care you know she will not be alone.
I guess I'm saying that you might rush back, as I did, and find that the situation is not as imminent as you had feared; equally, I am telling myself that even if I lived locally and popped in every day, the moment might still come when I'm not there and I'll just have to live with that.
What has become clearer to me is that it's probably more of an issue for me than for mum now - she has so little energy to be bothered with anything and my presence doesn't seem to be any particular comfort to her, as it would have been before the dementia took hold. So the heartache in your case might similarly be more for you, having full grasp of the situation, than for your aunt, who is probably unaware.
I'm an only child, and could never imagine not being with mum at the end or her not wanting me to be there; but the dynamics have changed now, and I'm really not sure who she thinks I am or whether I'm irrelevant to her.
As others have said above, it's largely a question of whether you feel you need to spend time with your aunt while you can. Either way, don't beat yourself up if you're not there at the end itself, as this can happen in normal circumstances when we have no advance warning. At least in care you know she will not be alone.
Thank you for responding. We completed our holiday as she had stabilised. One week after our return our aunt lost her fight on Saturday morning, I think much of the advice given was right, she wouldn't have wanted us to end our holiday, she's now at peace. God Bless her xx stay strong do what you feel is right and think what would mum done/said if she had been her former self before this cruel illness started to take her away from you.
Please don't worry
My father passed away last night having been in the later stages of vascular dementia. We visited yesterday but were in a quandary over what would happen, what are the implications of them not eating or drinking, should we be there etc. The care home manager told us that when patients don't eat or drink (as my father had not for a number of days) it's not like they are being deprived of those things, but rather that they don't want them as their bodies shut down and the body manages itself as nature intended. We said our goodbyes but were not there for my fathers actual passing because we didn't know the exact moment and it happened suddenly before we could get back to him. The nursing staff told us that often when people sit waiting, they pop out to the loo and people pass away in that moment. He was peaceful as care is managed using palliative care drugs which minimise any discomfort. Please don't worry. I had the same worries as you but the discomforts you imagine in yourself are not the same as those experienced by people peacefully coming to the end of their lives.
My father passed away last night having been in the later stages of vascular dementia. We visited yesterday but were in a quandary over what would happen, what are the implications of them not eating or drinking, should we be there etc. The care home manager told us that when patients don't eat or drink (as my father had not for a number of days) it's not like they are being deprived of those things, but rather that they don't want them as their bodies shut down and the body manages itself as nature intended. We said our goodbyes but were not there for my fathers actual passing because we didn't know the exact moment and it happened suddenly before we could get back to him. The nursing staff told us that often when people sit waiting, they pop out to the loo and people pass away in that moment. He was peaceful as care is managed using palliative care drugs which minimise any discomfort. Please don't worry. I had the same worries as you but the discomforts you imagine in yourself are not the same as those experienced by people peacefully coming to the end of their lives.
