End of life

JackieG1

New member
Sep 19, 2023
9
0
My mother is in a care home. She hasn't eaten for weeks, just takes sips of milk. She's so thin, doesn't speak. The problem is, my sister and I have been here several times before and somehow she has picked up. Two weeks ago we were told they were ordering anticipatory medication, were withdrawing her regular meds and would make her comfortable. We were preparing ourselves, but once again she picked up ever so slightly. Now she has gone back to sleeping most of the time. There is still a light in her eyes when she's opens them. How long will this go on? The emotional rollercoaster is exhausting.
 

Dovecote

New member
Mar 3, 2019
2
0
I'm so sorry to hear this, I understand how difficult it is to witness the decline of somebody close, yet not know how or when things will proceed. I think you are wise to prepare yourselves, as best you can, as it sounds as if your mothers medical team are anticipating that she is approaching end of life. In my own experience, once my mother was no longer swallowing/very little it was a matter of a couple of weeks. However, it must vary very much. I found that the GP was not forthcoming with a prognosis and when I asked for their estimation, she actually passed away much sooner. There are other signs that end of life is approaching imminently and your mothers nurses will be able to explain what these will be and should contact you as soon as they are there. Take care of yourself, as you say this is an exhausting time for you, sending you strength.
 

canary

Registered User
Feb 25, 2014
25,379
0
South coast
This final stage is indeed a terrible roller coaster and these rallies seem to happen with dementia far more often than you would think. My MIL showed every sign of being literally hours from death and the family had all been called in when she suddenly rallied and my mum had rallied several times previously so that even when she was actually dying I kept expecting her to do the same again

I'm afraid that there is just no knowing how long this stage will last which is why everyone is so vague. Do pace yourself in case there is another rally and just take everything as it comes

(((((((((((hugs)))))))))
 

Gladys1946

Registered User
Feb 17, 2019
67
0
I am absolutely burnt out with the emotions of this stage of this never ending journey. One minute my husband is semi conscious, next day he's sitting up smiling and chatting. How long I'd this torture going to go on for.
 

Woody54321

Registered User
Feb 19, 2024
16
0
My mother is in a care home. She hasn't eaten for weeks, just takes sips of milk. She's so thin, doesn't speak. The problem is, my sister and I have been here several times before and somehow she has picked up. Two weeks ago we were told they were ordering anticipatory medication, were withdrawing her regular meds and would make her comfortable. We were preparing ourselves, but once again she picked up ever so slightly. Now she has gone back to sleeping most of the time. There is still a light in her eyes when she's opens them. How long will this go on? The emotional rollercoaster is exhausting.
my mother is exactly the same I received a call from the care home on 15th April to say the Doctor was stopping meds and catheter removed and EOL injections as needed, so far she has not needed anything, she is bed bound not eating, accepting enriched drink in small amounts as her swallow is not great but so far comfortable. I have started to relax a bit as it was stressful to be told you are at that stage but then we seem to be in the holding phase again. My thoughts are with you but just wanted you to know you definitely not alone, it a horrible journey, big hugs xx
 

JackieG1

New member
Sep 19, 2023
9
0
my mother is exactly the same I received a call from the care home on 15th April to say the Doctor was stopping meds and catheter removed and EOL injections as needed, so far she has not needed anything, she is bed bound not eating, accepting enriched drink in small amounts as her swallow is not great but so far comfortable. I have started to relax a bit as it was stressful to be told you are at that stage but then we seem to be in the holding phase again. My thoughts are with you but just wanted you to know you definitely not alone, it a horrible journey, big hugs xx
Thanks. I feel like are lives are on hold. Seems universal. So sad for you too and anyone going through this. It's a tough old road to travel. Take care of yourself.xx
 

jfhn05020

Registered User
Apr 19, 2024
11
0
My mother is in a care home. She hasn't eaten for weeks, just takes sips of milk. She's so thin, doesn't speak. The problem is, my sister and I have been here several times before and somehow she has picked up. Two weeks ago we were told they were ordering anticipatory medication, were withdrawing her regular meds and would make her comfortable. We were preparing ourselves, but once again she picked up ever so slightly. Now she has gone back to sleeping most of the time. There is still a light in her eyes when she's opens them. How long will this go on? The emotional rollercoaster is exhausting.
I understand that this is an incredibly difficult time for you, so taking care of your emotional well-being and seeking support from friends, family, or a counselor can help you navigate this emotional rollercoaster. Remember, you're not alone, and it's okay to feel exhausted and overwhelmed. You're needed by your loved ones.
 

JackieG1

New member
Sep 19, 2023
9
0
Thankyou everyone. My mother passed away on 2nd May. My sister and I were with her. It all seems surreal but she's free of her poor shrunken body and her dementia. My heart goes out to you all on this difficult journey 💞❤️‍🩹💞
 

Sterlingtimes

Registered User
Aug 5, 2022
116
0
My mother has wanted to die for a long time now but cannot.

She is in a nursing home
Severe degenerative changes in the lower lumbar spine
Non-union of hip fractured two years ago
Prior severe pain has lessened in the past fortnight (surprising)
Bedbound
Eats almost nothing except sips of Fortisip
Critically thin
All drugs stopped save for painkillers
Speaks but is very confused
Institutional delirium
She is 95 but lives with the consistent illusion that she is 105 (ten years have passed since she was first hospitalised in March)

How long can this go on?
 

Gosling

Volunteer Host
Aug 2, 2022
2,013
0
South West UK
So sorry for your loss @JackieG1 . It was lovely that you and your sister were with your dear Mum as she passed. As you say, she is at peace now, free from this cruel disease. Please do now try to take your own time to grieve. (((hugs)))
 

Jale

Registered User
Jul 9, 2018
1,175
0
Sorry to hear of your Mum's passing @JackieG1 , I hope you can draw some comfort in that you and your sister were able to be with her.

Take care
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,629
0
My mother has wanted to die for a long time now but cannot.

She is in a nursing home
Severe degenerative changes in the lower lumbar spine
Non-union of hip fractured two years ago
Prior severe pain has lessened in the past fortnight (surprising)
Bedbound
Eats almost nothing except sips of Fortisip
Critically thin
All drugs stopped save for painkillers
Speaks but is very confused
Institutional delirium
She is 95 but lives with the consistent illusion that she is 105 (ten years have passed since she was first hospitalised in March)

How long can this go on?
@Sterlingtimes I am so sorry to read about what you and your mum are going through. Wishing you strength for these difficult days.
 

scotlass

Registered User
Jul 9, 2023
299
0
sterling, I can only imagine what you're going through, watching someone you love in such pain and discomfort must be terrible, I hope when the time comes that it's peaceful ,,
 

Sterlingtimes

Registered User
Aug 5, 2022
116
0
sterling, I can only imagine what you're going through, watching someone you love in such pain and discomfort must be terrible, I hope when the time comes that it's peaceful ,,
Thank you. Even weeks back, I thought that death was imminent. However, I am learning that the downward spiral can be a long process. Today, she spoke about me to an imaginary third person: "This is my son here".
 

JackieG1

New member
Sep 19, 2023
9
0
Sterling, having just been witness to my own mother's long deterioration and finally her passing, my heart goes out to you. We couldn't comprehend how someone could continue to live for so long with no food and only taking small sips of milk.
When the end came, it was within 48 hours of a 'definitive' change. The carers should be able to guide you.
It's the most tortuous time for all of you. You just want the suffering to end. Be strong. Be kind to yourself.x
 

Sterlingtimes

Registered User
Aug 5, 2022
116
0
Sterling, having just been witness to my own mother's long deterioration and finally her passing, my heart goes out to you. We couldn't comprehend how someone could continue to live for so long with no food and only taking small sips of milk.
When the end came, it was within 48 hours of a 'definitive' change. The carers should be able to guide you.
It's the most tortuous time for all of you. You just want the suffering to end. Be strong. Be kind to yourself.x
Dear Jackie, thank you for writing to me at a time which is and has been so difficult for you. I am sorry to learn of your mother's passing.

The nursing home completes a food log, which is mainly annotated "refused." Apart from Fortisip, my mother has eaten an occasional yoghurt. The log includes entries such as "soup three spoonfuls." My mother reluctantly lives on with tiny food quantities, which is perplexing.

Your kind posting is most helpful. Best wishes, Stephen