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My mother’s last days/weeks and the horror of what I call the “death watch”.

BrokenWings

New member
Oct 20, 2020
6
My mother is truly amazing. She is so loved and she lived by the golden rule. We knew she never wanted to go into a home because she made it clear through the years. She also cared for my multiple handicap brother all his life. So we children arranged to care for her and our brother in her home. Our brother is doing well, but my mom is fading away.
Two weeks ago she was eating purée meals and ice cream. She took in 1800 calories a day easily. All of the sudden she simply stopped eating. Her body was limp when we moved her from her bed to her chair in the living room. She used to help support some of her own body weight. It’s as if her muscles simply stopped working at all.
Now she’s in bed, she doesn’t move, drink, eat, or open her eyes. She’s like sleeping beauty. Just laying there looking beautiful, but unresponsive. We decided it’s time for hospice. This paradigm shift is shocking. I find it completely counter intuitive to not give her food and water, but I know that she’s in the process of dying peacefully and that she won’t take it. I’ve offered gently, and she purses her lips tight. I smile because it lets me know she’s still in there. It has now been 3 days since she’s had food or drink and I’ve started finding myself waiting for her to die. I watch, I check, and I’m afraid to leave her side. I’m scared she will go when I’m not there to hold her hand. I sleep on the floor in her room. I cry a lot. I tell her it’s okay to go home when she’s ready. I tell her that we will take care of our brother. But she’s not going.
I didn’t realize that dying could take so long. I wonder if she’s suffering. I hate that age can’t tell me if she needs something. I even want her to go because Ill know she’s not suffering anymore. I wish I could no for sure that this is painless for her. I cannot imagine it feels good to be trapped in a body that can’t move of speak or communicate a need. Is she hungry but just can’t eat? Is she thirsty but can’t swallow? Is she scared? Is she aware she’s dying? Is she sad that we’re crying, even though we try not to in front of her? Not knowing the answers is what hurts me the most. Not knowing if she needs something and isn’t getting it really tears me apart.
I want her to go for her own sake. I want her to stay for mine.
But most of all, I just want her to not suffer for one second.
 

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Woo2

Registered User
Apr 30, 2019
2,989
South East
Beautiful photo @BrokenWings . Welcome to Tp , although sorry you have the need to be here . Your lovely mum has no need for food or drink and I’m sure you would know if she was in any pain , she sounds perfectly peaceful and you are doing so well. Could you speak to her Gp if you are concerned to check her over ? My Nan was like this for just over 2 weeks , it was very hard to watch but she was at peace . Sending you hugs and strength , you are doing amazing. 🤗
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,142
Kent
I wish I could no for sure that this is painless for her.

I think your mother`s facial expression would show if she was in pain. @BrokenWings

When my husband was in the last stages of dementia, before a syringe driver was put in place, the expression on his face showed how much pain he was in. Once the syringe driver was employed his face was calm and peaceful.

I hope this helps.
 

jennifer1967

Registered User
Mar 15, 2020
1,285
Southampton
my nan lasted a week in hospital. she didnt want fluids and ripped the drip out of her arm or food. if i tried to moisten her lips, she would clamp her lips tight. basically she had made her decision and had sedation once. i sat by her bedside all the week watching her. i would sit and read my book by her. she was a total bookworm. then she just went, stopped breathing and that was that. no sound, i hadnt realised she had stopped breathing but she did it her way as she had done all her life
 

canary

Registered User
Feb 25, 2014
13,964
South coast
You are into the twilight world of the last long vigil
((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))

My mum went 17 days with no food or fluid. I could not imagine that things could go on for so long.
Has the hospice explained about physical changes that are likely to happen as the body slowly shuts down? If not, please speak to them.
As @Woo2 says, they no longer need food or fluid as the body can no longer process it, so she wont be either hungry or thirsty.. My mum started getting pain in the last few days of her life, but once she was put on a syringe driver, she was pain-free and calm.

BTW, people seem to have a certain degree of control over when they pass and many of them choose to wait until they are alone, so if she passes away while you nip to the toilet, please dont feel guilty.
 

Hazara8

Registered User
Apr 6, 2015
548
My mother is truly amazing. She is so loved and she lived by the golden rule. We knew she never wanted to go into a home because she made it clear through the years. She also cared for my multiple handicap brother all his life. So we children arranged to care for her and our brother in her home. Our brother is doing well, but my mom is fading away.
Two weeks ago she was eating purée meals and ice cream. She took in 1800 calories a day easily. All of the sudden she simply stopped eating. Her body was limp when we moved her from her bed to her chair in the living room. She used to help support some of her own body weight. It’s as if her muscles simply stopped working at all.
Now she’s in bed, she doesn’t move, drink, eat, or open her eyes. She’s like sleeping beauty. Just laying there looking beautiful, but unresponsive. We decided it’s time for hospice. This paradigm shift is shocking. I find it completely counter intuitive to not give her food and water, but I know that she’s in the process of dying peacefully and that she won’t take it. I’ve offered gently, and she purses her lips tight. I smile because it lets me know she’s still in there. It has now been 3 days since she’s had food or drink and I’ve started finding myself waiting for her to die. I watch, I check, and I’m afraid to leave her side. I’m scared she will go when I’m not there to hold her hand. I sleep on the floor in her room. I cry a lot. I tell her it’s okay to go home when she’s ready. I tell her that we will take care of our brother. But she’s not going.
I didn’t realize that dying could take so long. I wonder if she’s suffering. I hate that age can’t tell me if she needs something. I even want her to go because Ill know she’s not suffering anymore. I wish I could no for sure that this is painless for her. I cannot imagine it feels good to be trapped in a body that can’t move of speak or communicate a need. Is she hungry but just can’t eat? Is she thirsty but can’t swallow? Is she scared? Is she aware she’s dying? Is she sad that we’re crying, even though we try not to in front of her? Not knowing the answers is what hurts me the most. Not knowing if she needs something and isn’t getting it really tears me apart.
I want her to go for her own sake. I want her to stay for mine.
But most of all, I just want her to not suffer for one second.
I slept alongside my aged mother for one month as she ended her dementia journey. We all know, intellectually, that each one of us die, yet psychologically or emotionally struggle to see that as a natural part of life. A good and loving mother engenders that very powerful bond within us. We instinctively wish for that to last forever because we have lived with the expression of motherhood in our upbringing, the caring the mother gave regardless of personal want because it was done with love, the joyous times and the energy which enabled her to protect and nurture despite everything -- all of this and more renders the turmoil of expectation and concern during this very sensitive time very challenging. I understand entirely all you say. As long as " comfort " is in hand and an awareness of exactly what is taking place clinically, then allow all those feelings to play out. Sometimes it is very hard not to apply how one thinks and feels to the one we love, even though this might be irrelevant in actual fact. But being there during this period is important, as was l, despite suggestions from family that it was probably unnecessary . They, through no fault of their own, did not understand that " being there" was much much more than that. It is the epitome of all that we are, the actual recognition devoid of all that we incorporate in life, of something beyond the mundane, the materialistic, the confusion of it all -- being present alongside your mother who brought you into this world with all its complexity and beauty and gave the love which requires no explanation because you simply know it to be a living thing. And that never dies. The essence of that love emerges from what seems so desperate now, because it is indestructible.
Your heartfelt words express the words of many many others who might come to this forum in their own moment of introspection or desire to share something fundamentally personal and painful. So, thank you for that generosity of sharing.

With warm wishes
 

MTM

Registered User
Jun 2, 2018
34
Bless you. My dad was like this. He methodically starved himself for a month and then he stopped drinking. Like your mum, it was a tacit refusal. Dad had a strong faith so we called in the parish priest and she gave him the last rites (or extreme unction as it's called but I think that sounds like a bad reality TV show - sorry). After that he was calm. He couldn't speak and didn't always seem to be aware of our presence but he could nod and smile. It's not easy but your mum sounds incredibly peaceful she almost certainly knows and appreciates that you are there. I wasn't for my dad but Mum was holding his hand. I'm pretty sure he knew we were coming and hung on as long as he could. My brother and I were stuck in traffic on separate sides of the M25 when he died. I must try to make sure I don't die on a bank holiday weekend.

Sorry, I know that nothing I say can really help, and that this probably hasn't, so all I can do is wish you peace, oh and grace and strength, or at least more grace and strength because it sounds to me as if you have both of those in abundance. I am sure your mum is OK. And thank you for sharing about her, she sounds an absolute darling. God bless and take care.
 

MTM

Registered User
Jun 2, 2018
34
By the way, I'm not sure if I should post this but if it helps ...

After I heard the news Dad died, I thought about him. I've heard that the brain is still functioning at least five minutes after death so I thought about Dad really hard, as if I could somehow get my goodbye to him, telepathically. I concentrated and then, suddenly, I got a mental picture of the roof of the home, like google maps only higher resolution. It was receding at speed. Then we were moving along the downs, the sun was out, the sky and sea was blue, Shoreham power station chimney was white and so were the first of the Seven Sisters, away in the distance. The grass was green and peppered with white and yellow flowers. I could hear larks singing and Dad saying 'Look at it! It's so beautiful'. And there was this feeling of love and gratitude for the people in his life and utter and intense joy, like when you get off a fairground ride and think, 'wow! what a gas I have to do that again!' And then we were getting near the clouds and I knew he was going and sort of said, I can't come with you any further can I? And then I lost him. And I was back in the car with a bunch of twats in a van behind me hooting because the car in front had moved a couple of feet and I wasn't right up its backside, and trying to work out what, exactly, had just happened.

So what I'm trying to say is, I don't know what happens or where we go afterwards, but I'm not entirely certain that death is the end.
 

BrokenWings

New member
Oct 20, 2020
6
Beautiful photo @BrokenWings . Welcome to Tp , although sorry you have the need to be here . Your lovely mum has no need for food or drink and I’m sure you would know if she was in any pain , she sounds perfectly peaceful and you are doing so well. Could you speak to her Gp if you are concerned to check her over ? My Nan was like this for just over 2 weeks , it was very hard to watch but she was at peace . Sending you hugs and strength , you are doing amazing. 🤗
I think your mother`s facial expression would show if she was in pain. @BrokenWings

When my husband was in the last stages of dementia, before a syringe driver was put in place, the expression on his face showed how much pain he was in. Once the syringe driver was employed his face was calm and peaceful.

I hope this helps.
Yes. You sharing this is very helpful. I know I’ve come to the right place because there are people like you here who have been through it, who can share their experience, strength and hope.
 

marionq

Registered User
Apr 24, 2013
6,185
Scotland
I think the first thing is to get those around the dying person to admit that they are in the last phase of life. There seems to be a need by some hospital and care staff to keep saying clichés like “where there’s life there’s hope”.

Once it is acknowledged then keeping the person pain free should be the priority. I’ve sat with several family members in their last hours and sadly my own husband had the least peaceful death because although I could see what was coming the staff couldn’t until the very end. Unfortunately we don’t get the chance to go back and do a better job of helping them out of this life.
 

BrokenWings

New member
Oct 20, 2020
6
I slept alongside my aged mother for one month as she ended her dementia journey. We all know, intellectually, that each one of us die, yet psychologically or emotionally struggle to see that as a natural part of life. A good and loving mother engenders that very powerful bond within us. We instinctively wish for that to last forever because we have lived with the expression of motherhood in our upbringing, the caring the mother gave regardless of personal want because it was done with love, the joyous times and the energy which enabled her to protect and nurture despite everything -- all of this and more renders the turmoil of expectation and concern during this very sensitive time very challenging. I understand entirely all you say. As long as " comfort " is in hand and an awareness of exactly what is taking place clinically, then allow all those feelings to play out. Sometimes it is very hard not to apply how one thinks and feels to the one we love, even though this might be irrelevant in actual fact. But being there during this period is important, as was l, despite suggestions from family that it was probably unnecessary . They, through no fault of their own, did not understand that " being there" was much much more than that. It is the epitome of all that we are, the actual recognition devoid of all that we incorporate in life, of something beyond the mundane, the materialistic, the confusion of it all -- being present alongside your mother who brought you into this world with all its complexity and beauty and gave the love which requires no explanation because you simply know it to be a living thing. And that never dies. The essence of that love emerges from what seems so desperate now, because it is indestructible.
Your heartfelt words express the words of many many others who might come to this forum in their own moment of introspection or desire to share something fundamentally personal and painful. So, thank you for that generosity of sharing.

With warm wishes
I have never heard a more articulate analysis of the process we go through. I truly feel understood. You describe love as a living thing, rather than a fleeting emotion. I hope you don’t mind if I use those words to describe love from now on.
 

BrokenWings

New member
Oct 20, 2020
6
I think the first thing is to get those around the dying person to admit that they are in the last phase of life. There seems to be a need by some hospital and care staff to keep saying clichés like “where there’s life there’s hope”.

Once it is acknowledged then keeping the person pain free should be the priority. I’ve sat with several family members in their last hours and sadly my own husband had the least peaceful death because although I could see what was coming the staff couldn’t until the very end. Unfortunately we don’t get the chance to go back and do a better job of helping them out of this life.
We have anti anxiety medicine as well as morphine for pain to give her if we see her grimacing or breathing laboriously.
 

Duggies-girl

Registered User
Sep 6, 2017
2,147
I understand a lot of your emotions @BrokenWings You don't want them to go but you don't want them to suffer. On the morning that dad died I had to dash to the chemist to buy some wipes which probably took me less than ten minutes in the car. Dad was in an awful state by then but I didn't think he was going to die that day, maybe the next day but not that morning.

On the way back from the chemist I had a screaming session in the car and I begged god to take dad because he had suffered enough and he did not deserve what was happening to him and then I had the same screaming session with my mum (who had died some years earlier) I begged her to come and get him for the same reason. Anyway I got back to find my husband in a state of panic because dad didn't look very good, I phoned my brother who was there within ten minutes and dad died peacefully soon after with us both there and me holding his hands and talking to him. The relief when he went was huge because it was over for him and this time there was no coming back. I don't know if god or my mum heard me but I thanked them anyway.

My poor dad weighed nothing, his arms and legs were like sticks, his feet and fingers were turning blue, he couldn't swallow and could only whisper but he could still smile. Dad died of cancer which I honestly think is preferable to going all of the way to the end with dementia but who knows.

Just talk to your mum and hold her hand, you can talk about anything.

Don't ever feel guilty.

The photo is lovely.
 

BrokenWings

New member
Oct 20, 2020
6
You are into the twilight world of the last long vigil
((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))

My mum went 17 days with no food or fluid. I could not imagine that things could go on for so long.
Has the hospice explained about physical changes that are likely to happen as the body slowly shuts down? If not, please speak to them.
As @Woo2 says, they no longer need food or fluid as the body can no longer process it, so she wont be either hungry or thirsty.. My mum started getting pain in the last few days of her life, but once she was put on a syringe driver, she was pain-free and calm.

BTW, people seem to have a certain degree of control over when they pass and many of them choose to wait until they are alone, so if she passes away while you nip to the toilet, please dont feel
We have anti anxiety medicine as well as morphine for pain to give her if we see her grimacing or breathing laboriously. I’m so sorry you
Bless you. My dad was like this. He methodically starved himself for a month and then he stopped drinking. Like your mum, it was a tacit refusal. Dad had a strong faith so we called in the parish priest and she gave him the last rites (or extreme unction as it's called but I think that sounds like a bad reality TV show - sorry). After that he was calm. He couldn't speak and didn't always seem to be aware of our presence but he could nod and smile. It's not easy but your mum sounds incredibly peaceful she almost certainly knows and appreciates that you are there. I wasn't for my dad but Mum was holding his hand. I'm pretty sure he knew we were coming and hung on as long as he could. My brother and I were stuck in traffic on separate sides of the M25 when he died. I must try to make sure I don't die on a bank holiday weekend.

Sorry, I know that nothing I say can really help, and that this probably hasn't, so all I can do is wish you peace, oh and grace and strength, or at least more grace and strength because it sounds to me as if you have both of those in abundance. I am sure your mum is OK. And thank you for sharing about her, she sounds an absolute darling. God bless and take care.
Your experience helps me know what to expect. That’s comforting for me. Thank you
 

Wildflowerlady

Registered User
Sep 30, 2019
279
Am so sorry you are going through this.
I was able to stay overnight for a few nights at my mums the last week of her life (2016) and watch over her as she was in a hospital bed in her lounge arranged by the local Hospice who came to look after her and medication and personnel needs. Mums needs accelerated really quickly from my calling her GP in one week the next she had passed away. Mum initially was given Oramorph from GP and patches but my dad had no idea how to give her the correct dose so called me at 3am one morning in a panic to go and give it to her. Mum then had diamorphine injections I had to collect from varying pharmacies daily as District Nurses only came to inject not supply. I had to call the Hospice out in the middle of the night to inject her but they were very good. I felt pretty helpless awaiting them arriving trying to comfort her as best I could. I was going home in the morning to my partner and to have a wash etc, my mum didn't have dementia but had liver cancer however dad had early signs of dementia which meant he couldn't cope with what was happening.
My mother didn't waken the last two days of her life by then she had a syringe driver attached and passed away very peacefully when I returned from home one morning having gone home briefly. I was upset she didn't waken again but it was a relief not to see her in pain anymore.
I like to think she had waited for me to return so that dad my sister and I could all be with her although no one should feel bad if their loved one chooses to go without them by their side. It was of comfort to know my mum went so peacefully she knew it was her time as said so just days earlier she even said she wanted to go. I'm sure your mum will be at peace when she passes too and in time you will feel comfort as you have been so wonderful in your care and love for her.
 

Wildflowerlady

Registered User
Sep 30, 2019
279
I understand a lot of your emotions @BrokenWings You don't want them to go but you don't want them to suffer. On the morning that dad died I had to dash to the chemist to buy some wipes which probably took me less than ten minutes in the car. Dad was in an awful state by then but I didn't think he was going to die that day, maybe the next day but not that morning.

On the way back from the chemist I had a screaming session in the car and I begged god to take dad because he had suffered enough and he did not deserve what was happening to him and then I had the same screaming session with my mum (who had died some years earlier) I begged her to come and get him for the same reason. Anyway I got back to find my husband in a state of panic because dad didn't look very good, I phoned my brother who was there within ten minutes and dad died peacefully soon after with us both there and me holding his hands and talking to him. The relief when he went was huge because it was over for him and this time there was no coming back. I don't know if god or my mum heard me but I thanked them anyway.

My poor dad weighed nothing, his arms and legs were like sticks, his feet and fingers were turning blue, he couldn't swallow and could only whisper but he could still smile. Dad died of cancer which I honestly think is preferable to going all of the way to the end with dementia but who knows.

Just talk to your mum and hold her hand, you can talk about anything.

Don't ever feel guilty.

The photo is lovely.
Hi @Duggies-girl
I understand your post my mum died of liver cancer in 2016 she didn't have dementia that we are now seeing in dad every day which is mentally very painful not only for him but for us as his two daughters. It was a relief when mum died as she was in physical pain which I think she had kept from us until she could no longer bare it she passed within one week of my getting her GP in to see her at home.
The pain of watching dad change has been going on for 4 years and we are now in the position where carers at home has become very difficult and the carers have had enough of him and his behaviour are wanting to quit but next step is having to try and get the LA and ASC to see that dad needs 24/7 care and its not going to be easy. Mums pain was very physical but hopefully short lived although we can never be sure how long she really suffered but dads dementia just goes on and on with all the upset and stress it causes not only to him but to the whole family and can't see when or how it will end.
 

Duggies-girl

Registered User
Sep 6, 2017
2,147
Hi @Duggies-girl
I understand your post my mum died of liver cancer in 2016 she didn't have dementia that we are now seeing in dad every day which is mentally very painful not only for him but for us as his two daughters. It was a relief when mum died as she was in physical pain which I think she had kept from us until she could no longer bare it she passed within one week of my getting her GP in to see her at home.
The pain of watching dad change has been going on for 4 years and we are now in the position where carers at home has become very difficult and the carers have had enough of him and his behaviour are wanting to quit but next step is having to try and get the LA and ASC to see that dad needs 24/7 care and its not going to be easy. Mums pain was very physical but hopefully short lived although we can never be sure how long she really suffered but dads dementia just goes on and on with all the upset and stress it causes not only to him but to the whole family and can't see when or how it will end.

Sorry about your mum @Wildflowerlady that must have been a huge shock. Dad had cancer and dementia although he was never difficult. He had noticeable dementia for a long time but he coped with it quite well. I realised that his short-term memory had gone a couple of years before he died and I moved in with him for the last year 24/7 and he didn't have a clue, he always thought that I had just popped in to see him. I was lucky because dad was very compliant and very funny but if he had been difficult or cantankerous I don't think I could have have coped.

He never really knew that he was ill because he would instantly forget but the deterioration at the end was shocking for us to see and I wished every day for a quick heart attack to put an end to it all.

Yes the dementia goes on and on and that is worse because you just don't know what will be next and it is very painful. I hope that you get some help from the LA because the stress can be awful especially if your dad is difficult and it sounds like 24/7 care would be best for him.
 

Hazara8

Registered User
Apr 6, 2015
548
I have never heard a more articulate analysis of the process we go through. I truly feel understood. You describe love as a living thing, rather than a fleeting emotion. I hope you don’t mind if I use those words to describe love from now on.
I sense that we are in accord. Love cannot be possessed nor is it subject to personal desire. Therein lies its unfathomable beauty. Unlike emotions and memory which can overwhelm us, love is compassion which is the flowering of truth. Like the mother cradling her baby and gazing wondrously into its eyes - with nothing else whatsoever to intrude upon the purity of the moment. As with end of life this too is so. And when that life is that of a mother, something very special takes place. Nothing in the world can harm nor change it.
 

Cez

New member
Oct 15, 2020
5
My mother is truly amazing. She is so loved and she lived by the golden rule. We knew she never wanted to go into a home because she made it clear through the years. She also cared for my multiple handicap brother all his life. So we children arranged to care for her and our brother in her home. Our brother is doing well, but my mom is fading away.
Two weeks ago she was eating purée meals and ice cream. She took in 1800 calories a day easily. All of the sudden she simply stopped eating. Her body was limp when we moved her from her bed to her chair in the living room. She used to help support some of her own body weight. It’s as if her muscles simply stopped working at all.
Now she’s in bed, she doesn’t move, drink, eat, or open her eyes. She’s like sleeping beauty. Just laying there looking beautiful, but unresponsive. We decided it’s time for hospice. This paradigm shift is shocking. I find it completely counter intuitive to not give her food and water, but I know that she’s in the process of dying peacefully and that she won’t take it. I’ve offered gently, and she purses her lips tight. I smile because it lets me know she’s still in there. It has now been 3 days since she’s had food or drink and I’ve started finding myself waiting for her to die. I watch, I check, and I’m afraid to leave her side. I’m scared she will go when I’m not there to hold her hand. I sleep on the floor in her room. I cry a lot. I tell her it’s okay to go home when she’s ready. I tell her that we will take care of our brother. But she’s not going.
I didn’t realize that dying could take so long. I wonder if she’s suffering. I hate that age can’t tell me if she needs something. I even want her to go because Ill know she’s not suffering anymore. I wish I could no for sure that this is painless for her. I cannot imagine it feels good to be trapped in a body that can’t move of speak or communicate a need. Is she hungry but just can’t eat? Is she thirsty but can’t swallow? Is she scared? Is she aware she’s dying? Is she sad that we’re crying, even though we try not to in front of her? Not knowing the answers is what hurts me the most. Not knowing if she needs something and isn’t getting it really tears me apart.
I want her to go for her own sake. I want her to stay for mine.
But most of all, I just want her to not suffer for one second.
 

Cez

New member
Oct 15, 2020
5
To Broken Wings
I have the strongest feeling that you are an amazing daughter, and believe that somewhere deep inside, your mother knows that you love her unconditionally. Follow your instincts, she is part of you and whatever you decide will subconsciously be led by your love for your mother and hers for you.
 

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