end of life - 11 days no water or food

Hazara8

Registered User
Apr 6, 2015
696
0
@Hazara8 thank you for your wise words.
it is 10 days until the day my husband died 2 years ago and today would have been our 31st Anniversary.
You have enabled me to release the tears which needed to be cried today.
Thank you very much for your kind words. I feel it is really important to release any emotion or need to cry without reservation. In so doing one often discovers something about oneself which might have remained hidden. And your words are very important too, because your story is unique because it is yours and yours alone. Sharing that story, however difficult, nourishes this Forum in such a positive way. My warmest wishes.
 

Chizz

Registered User
Jan 10, 2023
3,091
0
Kent
So many similarities . He is dying and I don't know how to cope with it. We've been together for over 60 years now and the thought of his passing in this awful state is more than i can bear. He doesn't eat or drink, can't speak and has little eyesight - how can anything be so cruel. Someone told me I was strong, but I just need to write this down and try not to cry. God bless him, he wanted to kiss me today and I just want to hug him.
Hi @phreeda - there's nothing wrong with crying, and release of emotion that brings.
Love and hugs.
 

phreeda

Registered User
Mar 8, 2023
24
0
He's been in the hospital for 18 days now and despite being made a "fast track" discharge patient he is still there and slowly, very slowly losing consciousness. I have done everything possible and more to get him home but why is there no true compassion that overrides all the red tape, the ridiculous 'rules', the 'he's just another old man' attitude of some of the staff. And why is lying in a puddle all day and being largely ignored preferable to being at home where he would be loved and comforted. ? Is there no justice in this world - I can't bear to see him like this and yet I can't keep away. No, dying from dementia is neither pretty, quick or dignified and neither is the suffering from those watching and praying . Please God give me strength to see this though......
 

Tomsamsmum

Registered User
Apr 17, 2022
36
0
He's been in the hospital for 18 days now and despite being made a "fast track" discharge patient he is still there and slowly, very slowly losing consciousness. I have done everything possible and more to get him home but why is there no true compassion that overrides all the red tape, the ridiculous 'rules', the 'he's just another old man' attitude of some of the staff. And why is lying in a puddle all day and being largely ignored preferable to being at home where he would be loved and comforted. ? Is there no justice in this world - I can't bear to see him like this and yet I can't keep away. No, dying from dementia is neither pretty, quick or dignified and neither is the suffering from those watching and praying . Please God give me strength to see this though......
Sending love and strength
 

Chizz

Registered User
Jan 10, 2023
3,091
0
Kent
I'm sorry @phreeda you're feeling "the system" is failing you and your dad. You know you have the carers' sympathy and best wishes.
 

Hazara8

Registered User
Apr 6, 2015
696
0
He's been in the hospital for 18 days now and despite being made a "fast track" discharge patient he is still there and slowly, very slowly losing consciousness. I have done everything possible and more to get him home but why is there no true compassion that overrides all the red tape, the ridiculous 'rules', the 'he's just another old man' attitude of some of the staff. And why is lying in a puddle all day and being largely ignored preferable to being at home where he would be loved and comforted. ? Is there no justice in this world - I can't bear to see him like this and yet I can't keep away. No, dying from dementia is neither pretty, quick or dignified and neither is the suffering from those watching and praying . Please God give me strength to see this though......
Sometimes it is very difficult to accept that hospital is probably the most appropriate place in which to care efficiently in a clinical way, a loved one who is compromised by dementia. At home you have the whole ambience of familiarity and "comfort" and that sense of belonging which is borne out of having lived a life there to such an extent one even feels the very bricks and mortar know you and who you are. Hospitals vary alas in the way in which they address dementia patients. I have witnessed this directly. There is often an obvious lack of true awareness as to the nature of dementia. Hospitals are under pressure nowadays and what might have been many years ago in respect of Care, is diluted by all manner of demands on time and the way that nursing has seemingly changed solely due to these pressures. Sixty odd years ago my sister was nursing in a famous Children's hospital. I recall her saying how she once sat in a chair observing a sickly child for many hours on end, the Matron had earlier in her training informed the class of student nurses " that child laying in that bed is far more important than you are!" That credo was a kind of ongoing default line in the manner of Care in that institution in as much as the nursing itself was paramount and a zero tolerance prevailed. Nurses then were dedicated in that role and notions of marriage etc meant the end of that vocation for many. Today with tremendous advances in medicine we can live on even with serious illness and with both that and applicable Care expect a more or less normal life. Dementia requires a deep understanding of its nature by those who are in the nursing role. Because the one who is living with that disease is subject to anxiety, confusion, fear, elusive physical pain (often not expressed) that nursing/caring role becomes both imperative and beyond just appropriate treatment. It requires as a must, empathy and a real sensitivity as to the state of mind which that dementia patient is living with day and night. This is precisely what we, as Carer/ spouse/ daughter or son apply instinctively at home. Day and night we attend and we observe and we provide comfort in any way we can. At the same time we have to cope mentally and physically with the reality of this cruel disease.
I have to say that my late mother was cared for in hospital. Procedures were done with my attending to alleviate my mother's anxiety. I rarely left her bedside for one month. I slept in an armchair kindly provided by the nursing staff. I played soft music which was familiar to my mother when she was young. All of this, at the time, was immensely challenging. Heart rending. But there is nothing whatsoever that you can do to change it. The disease makes the rules. But it nevertheless cannot deny our humanity and our indestructible ability to love. That love enables the right action, the right care, the right attitude, the best interests. All of which on seeks to find in those who are playing the nursing role or medical role in whatever capacity. Because at the end of the day each one of them are laying in that hospital bed subject to that disease and utterly vulnerable. Thus, let your instincts prevail. Embrace or hold a hand and speak those words from the heart as they come to you. Shed a tear and never feel self conscious about doing so. Life is sacred and each one of us matters. And all the noise and activity and what seems so oblivious to your situation in the hospital, all of that cannot change the reality and essence of what is taking place with our loved one.
And your love above all supersedes everything else. There is profound comfort in that....
 

HartleyHugs

Registered User
Feb 27, 2022
112
0
Hello @Dolly78

I am so sorry to hear about your dad and the way he is now at end of life.

When someone with dementia dies it is neither quick nor pretty Im afraid. The body closes down slowly over days or weeks and at the end they stop eating and drinking altogether because their body can no longer process it.

But the body clings to life and goes on for much longer than you would think possible. My mum went on for 17 days with no food or fluid and I had a feeling of "dear god, how can she possibly still be alive?". It is such a difficult twilight world, like living in limbo when when you want them to die yet cannot bear the thought of it happening and it seems as though the world stands still and reduces to the size of a room.

The end will come though, and Im glad that she is being kept pain-free. You will notice physical changes like the limbs growing cold, the skin mottling and, right at the end, the breathing will change so that there are gaps between breaths.

Make sure you look after yourself during this last long vigil and dont forget to eat and sleep
(((((((((((((((((((((((((((hugs)))))))))))))))))))))))))
Me again @canary I've just read this and it's made me realise mum is probably worse than I thought. Last night I noticed a funny colouring to her skin and her hands were colder than normal. She's been kept in bed now since last Tuesday, and I got a sense from the carers last night that they think it won't be long now. However this is the 3rd time end of life has started so who knows!
I really struggled last night mum was more aware than I have seen in ages, she seemed to understand some of what I was saying and as soon as I started to make moves to leave she became so upset and uncontrollable crying and kept saying I don't want to go, and of course in my tired mind I just thought she was telling me she didn't want to die, but equally could of been her way of saying she wanted me to stay! I wish I could be with her all day at the moment but I have a 12 year old son who needs me and I know she is being cared for well by the carers. I'm going every day I can and will hold her hand for as long as I can.
 

HartleyHugs

Registered User
Feb 27, 2022
112
0
Sometimes it is very difficult to accept that hospital is probably the most appropriate place in which to care efficiently in a clinical way, a loved one who is compromised by dementia. At home you have the whole ambience of familiarity and "comfort" and that sense of belonging which is borne out of having lived a life there to such an extent one even feels the very bricks and mortar know you and who you are. Hospitals vary alas in the way in which they address dementia patients. I have witnessed this directly. There is often an obvious lack of true awareness as to the nature of dementia. Hospitals are under pressure nowadays and what might have been many years ago in respect of Care, is diluted by all manner of demands on time and the way that nursing has seemingly changed solely due to these pressures. Sixty odd years ago my sister was nursing in a famous Children's hospital. I recall her saying how she once sat in a chair observing a sickly child for many hours on end, the Matron had earlier in her training informed the class of student nurses " that child laying in that bed is far more important than you are!" That credo was a kind of ongoing default line in the manner of Care in that institution in as much as the nursing itself was paramount and a zero tolerance prevailed. Nurses then were dedicated in that role and notions of marriage etc meant the end of that vocation for many. Today with tremendous advances in medicine we can live on even with serious illness and with both that and applicable Care expect a more or less normal life. Dementia requires a deep understanding of its nature by those who are in the nursing role. Because the one who is living with that disease is subject to anxiety, confusion, fear, elusive physical pain (often not expressed) that nursing/caring role becomes both imperative and beyond just appropriate treatment. It requires as a must, empathy and a real sensitivity as to the state of mind which that dementia patient is living with day and night. This is precisely what we, as Carer/ spouse/ daughter or son apply instinctively at home. Day and night we attend and we observe and we provide comfort in any way we can. At the same time we have to cope mentally and physically with the reality of this cruel disease.
I have to say that my late mother was cared for in hospital. Procedures were done with my attending to alleviate my mother's anxiety. I rarely left her bedside for one month. I slept in an armchair kindly provided by the nursing staff. I played soft music which was familiar to my mother when she was young. All of this, at the time, was immensely challenging. Heart rending. But there is nothing whatsoever that you can do to change it. The disease makes the rules. But it nevertheless cannot deny our humanity and our indestructible ability to love. That love enables the right action, the right care, the right attitude, the best interests. All of which on seeks to find in those who are playing the nursing role or medical role in whatever capacity. Because at the end of the day each one of them are laying in that hospital bed subject to that disease and utterly vulnerable. Thus, let your instincts prevail. Embrace or hold a hand and speak those words from the heart as they come to you. Shed a tear and never feel self conscious about doing so. Life is sacred and each one of us matters. And all the noise and activity and what seems so oblivious to your situation in the hospital, all of that cannot change the reality and essence of what is taking place with our loved one.
And your love above all supersedes everything else. There is profound comfort in that....
That was so beautiful to read @Hazara8 I have definitely be shedding tears in random places this week and your piece made me realise it doesn't matter. It also helped me understand that it doesn't matter what I say to mum at the moment really just that I'm there and she knows that someone is being kind and holding her hand.
 

Chizz

Registered User
Jan 10, 2023
3,091
0
Kent
Just the way it goes!

I've seen the loneliness and fears,
Held her hand, and wiped the tears
Soon enough they want the bed,
And when all is done, all is said
She'll be forever in my head
Then I'll be lonely, with my fears
She won't be here to hold my hand
She won't be here to wipe my tears
 

special 1

Registered User
Oct 16, 2023
78
0
Hi,

My dad had a stroke and or seizure 1 1days ago at home. He didn't want to go into hospital again and no resuscitation either. He has had no water or food for 11 days and is still alive. He has a line with morphine, midazolam, and a drug for coughing in. How long can this go on for? Its awful to see him like that, and also for my mum. I feel so sad, and want him to be at peace.
My heart goes out to you and your family. 🦋
 

Hazara8

Registered User
Apr 6, 2015
696
0
That was so beautiful to read @Hazara8 I have definitely be shedding tears in random places this week and your piece made me realise it doesn't matter. It also helped me understand that it doesn't matter what I say to mum at the moment really just that I'm there and she knows that someone is being kind and holding her hand.
Bless you.
 

phreeda

Registered User
Mar 8, 2023
24
0
Thank you all for your understanding words. It took over three weeks and a 'fast track' diagnosis to get my husband home from hospital where i can look after him along with some truly wonderful care from the local hospice and district nurses as well as some agency carers and of course our children.
The system is workable but only with huge determined but exhausting effort.
He is comfortable now but hasn't eaten or drunk anything for over 4 weeks and I don't understand how he has survived so far. It's breaking my heart to see him but i can be with him all day and night and believe he knows i am there. Even so I dread the end and hope he isn't suffering and knows how much I love him. He has only days left.
These words express it all better than I can:
"If ever two were one, then surely we, If ever man were loved by wife, then thee.
If ever wife was happy in a man, Compare with me, ye women if you can"
(Anne Bradstreet 1678)
 
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canary

Registered User
Feb 25, 2014
24,656
0
South coast
He is comfortable now but hasn't eaten or drunk anything for over 4 weeks and I don't understand how he has survived so far
It seems unbelievable how long the body clings to life. I felt the same about mum, a sort of "dear god, how much longer can she go on for?"
The end will come soon
((((((((((((((((((((((((((hugs)))))))))))))))))))))))