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End of life and eating/drinking

joanne d

Registered User
Feb 9, 2013
44
Hi there,
My mother has had Alzheimer's disease for at least 6 years if not longer. She has been in an EMI care until since June 2016 when she became unable to look after herself and also immobile, She has deteriorated gradually but still able to speak in short sentences or words in context until recently. She was very pleasant, undemanding and appeared content,
She has not been eating or drinking enough for the past 5 or 6 weeks bur remained alert up until about 2 weeks ago when she deteriorated to the extent that she was sleeping all the time and refusing to eat or drink. She is now confined to bed , asleep or appears to be and perhaps eating a yoghurt or 2 but nothing else, She has lost a lot of weight. The change in her appears dramatic. However, she is comfortable and peaceful with no sign of pain or ditstress.Yesterday (Sunday)the out of hours GP was called to check her out and authorise an end of life care plan should she deteriorate further.Her physical checks were all ok. I have decided that she should be nursed in the care home rather than be admitted to hospital.
MY QUESTION IS ...has any one else been in my situation? How much information were you given? I know its a really difficult question but should I prepare myself for her imminent demise?
I have no idea what to do regarding spending time with her. If she only has a few days I would take some time off work. I want to spend her last days with her. I dont know how I will concentrate in work if I have no idea how much time I can spend with her in her final days and when to start taking time off.I would be devastated if I made the wrong choice.
 

Beate

Registered User
May 21, 2014
12,060
London
Watching a loved one die is one of the hardest things imaginable. You don't have to be there the entire time, it might break you. In my case it took 5 days from hospital admission with pneumonia. No one will be able to tell you how long it will be for your mother, but it's good that she has an end of life care plan. I'm sure the care home will call you if they think it's imminent.
 

canary

Registered User
Feb 25, 2014
13,964
South coast
This stage can go on for a surprisingly long time - my mum went 17 days with no food or fluid, but it is not usually that long.
The care home will probably know once the end is imminent as they see it quite a lot.

I think that deciding that she should not go to hospital is a good thing - they cant do anything there and our LOs with dementia find it very, very stressful. Much better to pass away peacefully in surroundings that they know.
 

joanne d

Registered User
Feb 9, 2013
44
Thankyou everyone for your advice. I went through the same thing with my dad last October but he appeared to be suffering and it was hard to watch being so uncomfortable. I was with him at the hospital for 4 nights before he passed and the signs were there. It is a a horrible mix of emotions . At least my mum is peaceful but still feel bad for a feeling of being in limbo.
 

Titch101

New member
Mar 14, 2019
3
Hi there,
My mother has had Alzheimer's disease for at least 6 years if not longer. She has been in an EMI care until since June 2016 when she became unable to look after herself and also immobile, She has deteriorated gradually but still able to speak in short sentences or words in context until recently. She was very pleasant, undemanding and appeared content,
She has not been eating or drinking enough for the past 5 or 6 weeks bur remained alert up until about 2 weeks ago when she deteriorated to the extent that she was sleeping all the time and refusing to eat or drink. She is now confined to bed , asleep or appears to be and perhaps eating a yoghurt or 2 but nothing else, She has lost a lot of weight. The change in her appears dramatic. However, she is comfortable and peaceful with no sign of pain or ditstress.Yesterday (Sunday)the out of hours GP was called to check her out and authorise an end of life care plan should she deteriorate further.Her physical checks were all ok. I have decided that she should be nursed in the care home rather than be admitted to hospital.
MY QUESTION IS ...has any one else been in my situation? How much information were you given? I know its a really difficult question but should I prepare myself for her imminent demise?
I have no idea what to do regarding spending time with her. If she only has a few days I would take some time off work. I want to spend her last days with her. I dont know how I will concentrate in work if I have no idea how much time I can spend with her in her final days and when to start taking time off.I would be devastated if I made the wrong choice.

Hi, I'm new here and in the same situation. Mum has got mixed dementia and my sister has been her full time carer, which she has done an amazing job. I try and help where I can, but have to work. For 3years there was no external help. After a uti mum discharged from hospital and no care plan or support, we know better now. After an infection last Sept care in place and she came home in Nov, other than less mobility Mum was doing well.. Until 4 weeks ago when another infection hit. So into hospital and yesterday talks with doctors for end of life car plan, so no more treatment, just make comfy. Mum is eating and drinking very little, doctors say end of life can be up to 12 months!! It is a real emotional rollacoaster. So I'm asking the same questions as you and does anyone know how long if not eating or drinking, she is sleeping a lot and eyes closed most of the time. My heart goes out to everyone who is dealing with this x
 

joanne d

Registered User
Feb 9, 2013
44
Hi everyone. My lovely mum passed away very peacefully yesterday. Mixed emotions but in a way a relief. She was peaceful in life and now peaceful in death. Anyone else going through the same thing take consolation that the end doesn't always have to be traumatic. Mum is reunited with dad now. I also take comfort from the fact that I could be there in her final days even if it was intermittent. That's all we can ask. We are not superwoman despite the feeling that we need to be. Big hugs to all of you.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,443
Yorkshire
sad news @joanne d
your mum has found peace
and you seem comforted by knowing you did all you could, I'm glad of that - that's how I felt after dad's passing, and has reassured me over the last few weeks, so I hope it's the same for you
best wishes
 

Kikki21

Registered User
Feb 27, 2016
2,268
East Midlands
So sorry to hear about your mum @joanne d - I fear that I am not too far behind you as to the stage where my mum is now.
I dislike hospitals intensely & this probably stems from when my dad died 19 yrs ago. Although he had been in hospital for a week, his passing was quite sudden & the hospital called me first to get my mum & I to come in.
His passing was very peaceful, he had already slipped into a coma & died a few hrs after we had come in.
I have to say that I felt very distressed as to how my mum was tonight. She seemed very agitated, pulling at her clothing & showing distress at everything the nurses & dr was doing with her.
To me, she has had enough. I’m on massive tenterhooks now just waiting for a phone call.
 

Norfolk Cherry

Registered User
Feb 17, 2018
304
Joanne d and Kikki21 Sorry to hear this. My mum also is in bed, in her care home. Also is refusing food, drink, meds, is having pain patches for a fall. The doctor says it is not in her best interests to go to hospital, which I understand. It's very hard watching her in so much emotional and physical pain and distress. No one deserves to suffer like this. She's skeletal. We are told palliative care is so much better these days. I disagree. I have heard too many stories of painful drawn out deaths. I am told that increasing the pain relief will make her too drowsy to eat or drink the few mils she does take.
 

canary

Registered User
Feb 25, 2014
13,964
South coast
Joanne d and Kikki21 Sorry to hear this. My mum also is in bed, in her care home. Also is refusing food, drink, meds, is having pain patches for a fall. The doctor says it is not in her best interests to go to hospital, which I understand. It's very hard watching her in so much emotional and physical pain and distress. No one deserves to suffer like this. She's skeletal. We are told palliative care is so much better these days. I disagree. I have heard too many stories of painful drawn out deaths. I am told that increasing the pain relief will make her too drowsy to eat or drink the few mils she does take.
This thread is 18 months old Norfolk Cherry, so you are unlikely to get a response from Joanne and Kikki, but I am sorry this is happening to your mum.
When someone dies from dementia it can be quite harrowing and can often go on for much longer than you expect or would want.

If you would like to, you could start your own thread and we can hold your virtual hand through the coming days
(((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))
 

Norfolk Cherry

Registered User
Feb 17, 2018
304
@canary Thank you for this, I may well do that, it certainly helped just putting it down. This site has been invaluable all the way through, the support is everything.
 

farooq.muhammad

New member
Aug 15, 2020
1
Hi my father 76 dementia and he seems in last stage..for last 48 hour he has not eaten or drink anything...mouth remain open'eyes remain open! Only blink of eyes...can we do anything as ut is hard to see him.....my father is with my mum and brother in Pakistan..and im in Austria watching him dying via cam from Austria'cant do anything..as in Pakistan u even do not have services to call someone...
 

canary

Registered User
Feb 25, 2014
13,964
South coast
Hellp @farooq.muhammad and welcome to DTP, although I am sorry that you have found us in such a sad time.

What you are describing is normal when someone is dying from dementia. Their body closes down slowly over days or even weeks. As part of this they stop eating and drinking because the body no longer needs it and they become almost comatose. There isnt anything that you can do except for keeping them comfortable and pain-free and I would expect that this is available in Pakistan.
I am sorry that you are having to watch this by cam - it is harrowing to keep watch and can last longer than you expect or would want.