Mum - Is she dying?

[Stevie93]

Hi everyone,
Apologies for starting potentially a duplicate thread however having scanned through a few similar threads, they're too dissimilar.

Ill try to keep it short -
Mum diagnosed in August 2014, admitted to nursing home November 2017.

She has been completely dependent on 24/7 care for all her needs for over 2 years now. She does not speak, walk, move etc...

She's been on pureed food and thickened fluids for again probably 2 years, 98 out of 100 times she will eat and drink all she's given.

Sunday 29th December her sister (my auntie) visited and could not get her to eat or drink anything, mum going in and out of sleep. Fast forward to Saturday 4th Jan, we receive a phone call from the nursing home that mums in a ambulance on the way to hospital as she hasn't eaten or drank for 48 hours and keeps holding food/fluid in her mouth. 8 hours later in hospital the nurses get her cleaned up her mouth where food had dried and she drank 50ml-100ml of water with no problem, so she's discharged back to nursing home. A & E doctor basically said there's no need for her to be hospitalised and it was a waste journey for everyone involved.

Now today (Friday 10th) we receive another phone call again she's not eaten or drank (had been eating and drinking Sunday-Thursday AM) they want to send her to hospital, we say no as didn't want to be shamed for wasting NHS time and go to the home to see how she is ourselves. Get here and whilst she looks extremely tired we got her to drink and now she is fast asleep snoring her head off.

Now forgive me for being blunt however having trial runs of my mums death is so emotionally draining, not to mention making me feel like the girl who cried wolf having to leave work as my mum is potentially dying, only to return again with her still alive.

So my question is, if anyone's had a similar experience to mine, how close are we to the end? can they go through phases of not eating and drinking then eating and drinking normally again?

No one can seem to tell us if this could be the beginning of the end, everything forum suggests once mobility, swallowing, talking declines that's the end but mum lost all of those abilities so long ago now.

Sorry for the long rambling post.

Thanks in advance
Stevie x

 

[Pete1]

Hi @Stevie93. firstly welcome to the forum. Has the GP been out to assess Mum in her current state (given the recent history)? Without knowing the exact details is does sound as though Mum should be on end of life care. The GP is the one that needs to assess Mum and put appropriate measures in place - I do agree the Hospital probably isn't the place for your Mum. This is a really difficult time for you all, try and stay strong.

 

[canary]

Im afraid that no-one can tell you how long. This eating, not eating, drinking,not drinking can go on for some time. In the last year of her life I was told that mum was at end of life, only for her to perk up and start eating and drinking again three times. When she finally passed away she had gone 17 days with no food or fluid, although I gather that it is not usually that long.
Your mum is near the natural end and her body has been slowly closing down over the previous weeks and months. Im afraid that your mum might go on for several months more, or she might stop eating and drinking and pass away next week.

It is very difficult living in limbo like that, but I do think that you are right not to take her to hospital.

 

[Stevie93]

Hi @Stevie93. firstly welcome to the forum. Has the GP been out to assess Mum in her current state (given the recent history)? Without knowing the exact details is does sound as though Mum should be on end of life care. The GP is the one that needs to assess Mum and put appropriate measures in place - I do agree the Hospital probably isn't the place for your Mum. This is a really difficult time for you all, try and stay strong.

Hi Pete, thank you for your response.

Can't even remember the last time mum was assessed by the GP, she's been on "end of life care" since at least August 2018, sorry dates are a blur but i know for definite as they've told us she is in end of life stages.

Thank you

 

[Stevie93]

Im afraid that no-one can tell you how long. This eating, not eating, drinking,not drinking can go on for some time. In the last year of her life I was told that mum was at end of life, only for her to perk up and start eating and drinking again three times. When she finally passed away she had gone 17 days with no food or fluid, although I gather that it is not usually that long.
Your mum is near the natural end and her body has been slowly closing down over the previous weeks and months. Im afraid that your mum might go on for several months more, or she might stop eating and drinking and pass away next week.

It is very difficult living in limbo like that, but I do think that you are right not to take her to hospital.

Thank you for your reply

That's exactly it, a horrible limbo of not knowing when. But we do believe she is nearing the end, however close or long that takes.

 

[Pete1]

I was just thinking @Stevie93 she might need end of life care, but if she is in a nursing home they really should be arranging that and telling you what is happening (it normally involves a GP visit).

 

[Splashing About]

What @canary said...basically. I’m doing almost the same thing. “Trial runs of death” and the reference to crying wolf...

It’s emotionally draining to be in a state of constant preparation for ‘that call’ so I relax and decide she’s going to live for another year if not more....

and then she stops eating for several days, her weight is in free fall...and I mentally steel myself for ‘that call’ but after several days I realise I have to force myself to live normally...

and then she becomes unresponsive, sleepy

...and off we go again.

I ponder how many years will I feel like this. That’s before we even throw in the emotional burden of watching her suffering.

 

[DesperateofDevon]

What @canary said...basically. I’m doing almost the same thing. “Trial runs of death” and the reference to crying wolf...

It’s emotionally draining to be in a state of constant preparation for ‘that call’ so I relax and decide she’s going to live for another year if not more....

and then she stops eating for several days, her weight is in free fall...and I mentally steel myself for ‘that call’ but after several days I realise I have to force myself to live normally...

and then she becomes unresponsive, sleepy

...and off we go again.

I ponder how many years will I feel like this. That’s before we even throw in the emotional burden of watching her suffering.

Bless you, I’m struggling now Dads passed. But those last stages are horrible to see, honestly I wish I had answers but sadly all I can say is you will know when it’s time. My heart broke seeing Dad, I just knew & then I felt peaceful & accepted that this was the end of Dads life here.
I’d love to feel that calm peaceful acceptance now... tumultuous turmoil is a good description for my current state of mind.
I wanted his suffering & ours to end, now it has I’m lost ...