My mom has dementia . Every symptom there is . SHe refused all medications ..not just now but for all of her 92 years. WE had 24 hour helpers most of them couldn't take the sundowner's even though they all say they could handle it. Because she wouldn't take meds at all ',she hates pills , the hospice/rehab center determined that all of a sudden she is dying and stopped feeding and just inject morphine and other drugs to keep her sedated in a coma type sleep. No doctor I have spoken with that has seen her has heard about this procedure including my Psychiatrist relative. SHe went from typical elderly woman to looking like a starving prisoner of war you would see in a concentration camp. Anyone has any input or similar experience with their loved ones ?
SO they stop feeding and just watch them deteriorate ?
- Thread starter glenlo
- Start date
Welcome to the forum @glenlo
It sounds as if no one has discussed the state of your mother`s health with you and I would ask to see a practitioner and question their treatment.
If your mother really is receiving end of life care, it can be distressing, especially if you have doubts about the stage she is at.
People on end of life care are given drugs to ensure they don`t suffer pain. This happened with my husband and I was grateful for them but I fully accepted he was at the end of his life.
If you have doubts, only a discussion with a medic will help ease your mind.
It sounds as if no one has discussed the state of your mother`s health with you and I would ask to see a practitioner and question their treatment.
If your mother really is receiving end of life care, it can be distressing, especially if you have doubts about the stage she is at.
People on end of life care are given drugs to ensure they don`t suffer pain. This happened with my husband and I was grateful for them but I fully accepted he was at the end of his life.
If you have doubts, only a discussion with a medic will help ease your mind.
Hello @glenlo I am so sorry to hear anout your mother
I think that everyone on here who has had someone die from dementia will recognise this stage and the fact that she is in a hospice says to me that your mum is dying, but you need to talk to the staff at the hospice to confirm this.
When someone dies from dementia it is neither quick nor pretty, Im afraid. When mum died I found the process quite traumatic and I think most people watching feel that way, especially if you have not had things explained to you and are aware of what happens.
During the dying process the body closes down slowly over days and weeks and during this time their food intake reduces so that eventually they stop eating and drinking completely. This happens because the body cannot process it anymore and if you force food on them it can cause pain. This can go on for much longer than you would think possible as the body seems to cling to life. My mum went 17 days with no food or fluid whatsoever, but most people do not go on that long.
It is important to understand that they are not starving to death - they are already dying and stopping eating is part of the process.
Because they are not eating or drinking they lose a lot of weight very quickly. Yes, my mum looked like a living skeleton. Other things that happen is that they gradually pass into a comatose state, the limbs grow cold and, right near the end, the breathing changes so that there are gaps between breaths (Cheyne Stokes breathing) and the blood pressure falls.
The main thing to do during this period is to keep them pain-free and comfortable so that they can pass peacefully. Mum was given strong painkillers (morphine) and drugs to reduce secretions. This was initially done by injection, but when this was not sufficient it was given by syringe driver.
I found the whole process totally harrowing and near the end was feeling - dear god, how can she still be alive? But she was. The staff were wonderful, washing and turning her to keep her comfortable and they also looked after me too.
The end will come, but until it does you are living in limbo, a twilight world between life and death and it is incredibly hard. Make sure you eat and sleep
((((((((((((((((((((hugs)))))))))))))))))))
I think that everyone on here who has had someone die from dementia will recognise this stage and the fact that she is in a hospice says to me that your mum is dying, but you need to talk to the staff at the hospice to confirm this.
When someone dies from dementia it is neither quick nor pretty, Im afraid. When mum died I found the process quite traumatic and I think most people watching feel that way, especially if you have not had things explained to you and are aware of what happens.
During the dying process the body closes down slowly over days and weeks and during this time their food intake reduces so that eventually they stop eating and drinking completely. This happens because the body cannot process it anymore and if you force food on them it can cause pain. This can go on for much longer than you would think possible as the body seems to cling to life. My mum went 17 days with no food or fluid whatsoever, but most people do not go on that long.
It is important to understand that they are not starving to death - they are already dying and stopping eating is part of the process.
Because they are not eating or drinking they lose a lot of weight very quickly. Yes, my mum looked like a living skeleton. Other things that happen is that they gradually pass into a comatose state, the limbs grow cold and, right near the end, the breathing changes so that there are gaps between breaths (Cheyne Stokes breathing) and the blood pressure falls.
The main thing to do during this period is to keep them pain-free and comfortable so that they can pass peacefully. Mum was given strong painkillers (morphine) and drugs to reduce secretions. This was initially done by injection, but when this was not sufficient it was given by syringe driver.
I found the whole process totally harrowing and near the end was feeling - dear god, how can she still be alive? But she was. The staff were wonderful, washing and turning her to keep her comfortable and they also looked after me too.
The end will come, but until it does you are living in limbo, a twilight world between life and death and it is incredibly hard. Make sure you eat and sleep
((((((((((((((((((((hugs)))))))))))))))))))
@canary - your description is so accurate.
My beloved husband died just a week ago breathing his last breath as I held his hand. It's true that this illness deprives victims of the desire and capability to eat or drink and at the end they seem starved and almost skeletal. He 'lived' for almost 5 weeks without food and drink. Watching someone die is the most harrowing experience but when it happens there are no words to describe it and even then it's too soon. I am proud to have had the opportunity to nurse and look after him -but ........
Staying strong to cope with the grief of others as well as your own is hard but having support of loved ones helps a little. The breaking point will be I suspect the funeral. The love of my life is no more - after 61 years together I am alone.
My beloved husband died just a week ago breathing his last breath as I held his hand. It's true that this illness deprives victims of the desire and capability to eat or drink and at the end they seem starved and almost skeletal. He 'lived' for almost 5 weeks without food and drink. Watching someone die is the most harrowing experience but when it happens there are no words to describe it and even then it's too soon. I am proud to have had the opportunity to nurse and look after him -but ........
Staying strong to cope with the grief of others as well as your own is hard but having support of loved ones helps a little. The breaking point will be I suspect the funeral. The love of my life is no more - after 61 years together I am alone.
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I agree with everyone, you need to communicate with the staff looking after him to make sure you have peace of mind about what's happening. I was really helped by watching Hospice nurse Julie on social media (Tiktok, Insta) She's on a quest to educate people about EOL and her messages are strangely comforting. We lost our Dad in October and I recognise the stages you describe. It's a very tough journey, make sure you get as much support for yourself as possible. x
I think if your mother is in hospice, then she has obviously been very unwell for a long time and I am so sorry that you are facing this.
I can’t imagine that a hospice wouldn’t have had input from a medical practitioner but it seems that there has been a breakdown in communication though that would surprise me. Perhaps you need to ask some pertinent questions of the staff who are caring for her.
I’m so interested to read the messages from people who are facing end of life with their loved ones. My husband now does not wake at all when I visit him, even to acknowledge it is me, yet somehow I think he knows. I am finding each stage extremely painful and sad. Late yesterday afternoon I put My Fair Lady on his TV because it is our generation and he he suddenly sang” Ding Dong the bells are Gonna chime“. Nothing else. That was a lovely moment, but I found it too sad. I felt he was making a huge effort. So he is both listening yet wanting to sleep. I still love just to be with him. I suppose I am clinging on to the last bit of time we have together. He misses meals altogether, yet other meals he will eat whilst not really waking. I know this is all natural and the staff are so kind.
I am now trying very hard to concentrate on things at home, to get used to living alone which has to be faced, except it now seems more real. We have been together for 64 years, (which has flown by. I find myself thinking if only life could have gone a bit slower!). My children are not nearby and I just have to accept that they can’t visit regularly.
I know this stage may go on for a long time, but I didn’t realise how hard it would become. I have up to now tried to be so stalwart, but I’m not sure I am succeeding now!
I am now trying very hard to concentrate on things at home, to get used to living alone which has to be faced, except it now seems more real. We have been together for 64 years, (which has flown by. I find myself thinking if only life could have gone a bit slower!). My children are not nearby and I just have to accept that they can’t visit regularly.
I know this stage may go on for a long time, but I didn’t realise how hard it would become. I have up to now tried to be so stalwart, but I’m not sure I am succeeding now!
I’m so sorry to hear about your husband. The My Fair Lady moment is both beautiful and wonderful and sad. I guess flashes like that shows that your person is still in there, even when the dementia has taken away so much. I think it’s probably much harder for us family members and loved ones to watch someone going through this than the person with dementia themselves. It’s so hard to deal with and cope. I hope you find some strength and comfort. It is so hard to be suddenly living on your own too, I hope you’re coping okay. This forum is a very friendly place so don’t be afraid of writing down whatever you’re going through
Thank you for your reply Missodelli18. I am sorry I have not replied to your very kind comments earlier. I realise that I am fortunate that my husband is in a nursing home which is excellent and very close to me This took about eight months to arrange with the local authority. They give us a small amount of help with the fees, but wanted to move him to a cheaper home at the other end of the county, despite the fact that I explained I couldn’t drive that far regularly to see him.
In the few months since I wrote, not a great deal has changed but the deterioration in my husband is slowly creeping on. I sit and chat to him and his face still lights up a little. He is mostly asleep, eats but refuses quite a lot of the time, eating with his eyes closed. I think each action for him of washing, changing and feeding is exhausting for him. Although I know I have lost him, I cling on in this strange state, as he is still there. I am continuing do the garden and have just planted some real cherry trees. He would like that as we were ever the optimists and he loved picking anything we grew and making a note of quantities. I spend a lot of time lost in my thoughts. Of course I wish I was taking care of him but I know he is getting the best care possible and I think he feels secure in the familiarity of his room in the nursing home. I have to remember how I couldn’t turn him to keep him and the bed clean when he was at home. When we had carers coming in I to leave a key out for them at the last visit of the day, they were so busy they couldn’t come earlier and i had to go to bed! Prior to that period he had been taken to various hospitals following falls and on one occasion he was moved to a hospital at the other end of the county, about 2 hours ambulance journey away, only for a Physiotherapist to phone the next morning to ask me why was he there and could he come home! And yet the ambulance staff insisted on several occasions on taking him to hospital, under their rules, As we all know, Alzheimers patients seem to get a very raw deal altogether and I remember I had so many visits from various professionals before they would agree to issue me with a Sara Steady to help get my husband into the bathroom etc.
But these are just painful memories now and we all have to do our best and get on with each day.
I am fortunate to have a lovely family although they are all quite a distancecaway. I also have good neighbours who, it seems, keep an eye on my every move! They don’t interfere but I know they are there.
With all good wishes to everyone.
In the few months since I wrote, not a great deal has changed but the deterioration in my husband is slowly creeping on. I sit and chat to him and his face still lights up a little. He is mostly asleep, eats but refuses quite a lot of the time, eating with his eyes closed. I think each action for him of washing, changing and feeding is exhausting for him. Although I know I have lost him, I cling on in this strange state, as he is still there. I am continuing do the garden and have just planted some real cherry trees. He would like that as we were ever the optimists and he loved picking anything we grew and making a note of quantities. I spend a lot of time lost in my thoughts. Of course I wish I was taking care of him but I know he is getting the best care possible and I think he feels secure in the familiarity of his room in the nursing home. I have to remember how I couldn’t turn him to keep him and the bed clean when he was at home. When we had carers coming in I to leave a key out for them at the last visit of the day, they were so busy they couldn’t come earlier and i had to go to bed! Prior to that period he had been taken to various hospitals following falls and on one occasion he was moved to a hospital at the other end of the county, about 2 hours ambulance journey away, only for a Physiotherapist to phone the next morning to ask me why was he there and could he come home! And yet the ambulance staff insisted on several occasions on taking him to hospital, under their rules, As we all know, Alzheimers patients seem to get a very raw deal altogether and I remember I had so many visits from various professionals before they would agree to issue me with a Sara Steady to help get my husband into the bathroom etc.
But these are just painful memories now and we all have to do our best and get on with each day.
I am fortunate to have a lovely family although they are all quite a distancecaway. I also have good neighbours who, it seems, keep an eye on my every move! They don’t interfere but I know they are there.
With all good wishes to everyone.
I am glad that I could help
The guilt monster will get its claws into you and blight your life, if you let it. Knock it off your shoulder.
I'm sure that you would have done everything you could while they were still alive
xx
