SO they stop feeding and just watch them deteriorate ?

glenlo

New member
Nov 22, 2023
3
0
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 ?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,180
0
Kent
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.
 

canary

Registered User
Feb 25, 2014
24,656
0
South coast
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)))))))))))))))))))
 

phreeda

Registered User
Mar 8, 2023
24
0
@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.
 
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northumbrian_k

Volunteer Host
Mar 2, 2017
4,291
0
Newcastle
@phreeda I am sorry to hear about your husband and have so much admiration that you have been able to share this at such a traumatic time. Your courage in doing so will be of immense help to others facing similar situations. Take care of yourself and come back here whenever you need support.
 

canary

Registered User
Feb 25, 2014
24,656
0
South coast
((((((((((((((((((((((((hugs))))))))))))))))))))) @phreeda

I am so sorry for your loss.
Its good that you were with him at the end
Be kind to yourself now
xx
 

Izzy

Volunteer Moderator
Aug 31, 2003
73,777
0
72
Dundee
I too am sorry for your loss @phreeda. I’m glad you were with your husband at the end. Your love shines through your post.

Wishing you strength for the days and weeks to come.
 

Vanillaex

New member
Nov 25, 2023
3
0
@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.
I am so very sorry, am praying for you and your family.
 

hammang

Registered User
Dec 23, 2012
11
0
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
 

Lawson58

Registered User
Aug 1, 2014
4,220
0
Victoria, Australia
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 ?
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.
 

Goldenthyme

New member
Nov 15, 2023
6
0
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!
 

Missodell18

Registered User
Dec 16, 2022
148
0
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’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