Near death

Rugby1

New member
Aug 6, 2019
4
0
We were told two weeks ago that my LO was in end-phase, but the trouble is we have no idea what this really means and the nurses in the care home are just so vague. She has become bed bound, and is unable to move around in bed. She has absolutely no desire to get out of bed or even stay awake. Every time we visit she is sleeping-she might wake for a few minutes but just stares. She has no idea who we are and is unable to speak, she mutters a few noises and tries to form words but is unable to most of the time. It is so heartbreaking watching her just existing. My LO is now 91, is double incontinent, has problems swallowing so her water has a thickener put into it as otherwise the fluid just gets lodged in her throat and also has tachycardia. She does still eat a few mouthfuls of liquidised food some days. Yesterday we were told that she had been calling for her dead husband and thought that her agitation might indicate pain, so they have now put her on a transdermal opioid patch to manage pain. Her other medication has been withdrawn. The trouble is, we live miles and miles away and have no idea how close she is to fading, every weekend we travel the distance to be with her and watch her deteriorate before our eyes. The nurses give us no real indication as to whether death is imminent or whether we are just entering another long cruel phase of this horrific disease and my family are finding it unbearable as we don’t want her to be alone, but life, looking after children and work will not allow us to be there as much as we’d like to. She is turned regularly but has started to develop soars on her heels and back. I’m sure some of you on here have lived this final stage and have a better idea as to the pattern of deterioration and what we should be expecting over the next months-weeks just so we can be both mentally and physically (and spiritually) prepared. Thanks in advance.
 

Cat27

Registered User
Feb 27, 2015
13,057
0
Merseyside
Welcome to DTP @Rugby1.
Unfortunately there is no way of predicting how long this stage will last.
I wish you strength as it’s incredibly difficult to watch a loved one fade away.

Please keep posting as you’ll get lots of support here.
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
When both my father and my fil were at this stage, we were called on three separate occasions over a period of months on the grounds that they were about to die! Well, the care home were right the third time! OH, on the other hand, ‘had a downturn’ on the Thursday, another downturn on Sunday and died in the early hours on Monday, just as the locum gp had predicted. The staff, I may add, were all totally surprised!
So there is no telling. Very wearing for loved ones!
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hello @Rugby1 and welcome to DTP, although I am sorry that you have had to find us due to your circumstances

Unfortunately, there is no knowing how long this may last. End stages do not necessarily mean End of Life and sometimes they seem to rally for a while. I was told 3 times that mum had reached End of Life, but she bounced back. Even on the final time she went for 17 days with no food or fluid before she passed away, On the other hand some people pass away very quickly. There will be definite signs that the staff will pick up when she reaches End of Life, although (as my mum showed) even that is not necessrily final.

((((((((((((((((((((((((((((((hugs)))))))))))))))))))))) this last roller coaster is hard
 

Rugby1

New member
Aug 6, 2019
4
0
Thank you everyone for the responses. She’s the last thing I think about on a night and the first thing I think about on a morning. Is she still with us or will she die tonight on her own? The emotional stress is so tiring. I appreciate your support.
 

AW1938

Registered User
Feb 11, 2017
41
0
Thank you everyone for the responses. She’s the last thing I think about on a night and the first thing I think about on a morning. Is she still with us or will she die tonight on her own? The emotional stress is so tiring. I appreciate your support.
I am exactly the same as you, sitting here everyday watching her slip away is so painful. It helps to have this site to read and post x
 

Rugby1

New member
Aug 6, 2019
4
0
Just an update and hoping for some support through this cruel journey which shows no sign of letting up -we are now 8 weeks on from when we were told she was in end-phase and we called to sit by her bedside. Although I did not think my mother could deteriorate any further, she has. She was admitted to hospital this morning after severe vomiting (of compacted faeces) and dehydration. She hasn’t drunk or eaten for days.

The hospital have diagnosed pneumonia and are treating her with antibiotics. We get very little from them other than ‘she’s stable’ or ‘she’s comfortable’ despite being more rehydrated she is not eating and when she takes liquidised food, she coughs violently. They are having this assessed??? How much longer can this go on for? Life is at a total stand still for all of us and our mum seems to be suffering beyond anyone’s imagination.
 

Izzy

Volunteer Moderator
Aug 31, 2003
73,993
0
72
Dundee
I’m so sorry to read your update. How hard for all of you.

Wishing you strength and wishing your mother peace.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
I'm glad you thought to come and post here @Rugby1
such a tough time for your poor mum
and so hard for you all

maybe make it clear to the staff that you want to have an open and honest conversation about what is best for your mum now ... sometimes they can wait for a cue from family

very best wishes to you all
 

Mouse2014

Registered User
Mar 9, 2014
42
0
I am so sorry you’re experiencing this.. My Mum is 92 and is end stage.. Hasn’t eaten in 10 days, nor drunk in 8,, is on a syringe driver with morphine, hyocine for secretions and madazolam for agitation.
She has had the most horrific death rattle since Saturday night and is unconscious due to the increased meds but is still here, hanging on and refusing to go anywhere. It’s soul destroying and harrowing but I really do feel so sorry that you too are having to go through this..
No-one can ever tell, I think now, they just go when they are ready, despite defying medical expectations..
Good luck and stay strong.. xxx
 

Jale

Registered User
Jul 9, 2018
1,137
0
Have no words to offer except to say keeping you all in our thoughts at this very difficult and sad time
 

Fruit loops 1974

New member
Apr 15, 2021
1
0
I've recently lost my mother and although I work in care I never really understood what end of life care meant. I know now that they stop trying to help you live and up your morphine until you die.
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
Welcome to Dementia Talking Point @Fruit loops 1974.

Though end of life is a very sad time, it’s not quite as you describe it. Once the body starts to shut down, eating and drinking gets less until it stops. People don’t die because they are not eating and drinking, they stop eating and drinking because they are dying. The body no longer requires nourishment.

My husband was in end of life and he just slept peacefully. End of life medication was at hand to help if he appeared to be in pain or distressed. He suffered neither so the medication was not needed. Morphine is given to make someone. comfortable and pain free if needed. The staff if his nursing home were close by and his family with him, no one stopped helping him. There will always come a time when there is no way to reverse the inevitable.
 

Paulineannc

Registered User
Apr 29, 2012
103
0
Devon
I visited my 95 year old mum last Thursday, and though she doesn’t know me, she was happy in my company, while sitting in her chair, but kept dozing off.
I received a phone call from her nursing home on Saturday afternoon, saying that she hadn’t wanted to get out of bed, wouldn’t eat, and only accepting sips of water since my visit.
I guess her body is shutting down, and it seems to have been triggered by my last visit?
Am dreading what will now happen, and I’m a 40 minute drive away.
Just hoping she doesn’t suffer, but worried after reading some people’s experiences on here :(
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,258
0
High Peak
Oh @Paulineannc , nothing about your mum's illness is triggered by anything you do - please don't think that. There just comes a time when the body starts to shut down. Dying is often not an instantaneous thing but a process. The care home staff have recognised signs that often signify this is happening - becoming bedbound, speech stopping, not eating, sleeping almost constantly, etc. Sadly, dementia is a terminal illness, not something you can live with indefinitely.

It seems like the care home staff are fully aware - they will take care of her whether you can get there again or not.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Never, never think that any deterioration is your fault @Paulineannc
Im afraid it is inevitable that dementia will progress and eventually reach end of life. When they reach end of life it is not like you see on TV - it is something that happens over weeks as the body shuts down slowly. The care home will be able to look after her during this period
((((((((((((((((((((((((hugs)))))))))))))))))))))
 

Paulineannc

Registered User
Apr 29, 2012
103
0
Devon
Thank you both for your kind thoughts. So much appreciated.
I hadn’t been to visit for a few weeks previously, as visiting my7 year old granddaughter in Scotland, and two of my sons, and felt I had neglected her,
She was obviously getting more frail and eating less, but nonetheless came as a shock to me, even though I had been discussing with family that her quality of life was not good.
It just seemed coincidental about the sudden downward progression in her health.
It’s good to talk with people who understand. Thank you xx