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Eating...not eating...drinking..not drinking

Cat27

Volunteer Moderator
Feb 27, 2015
10,865
Merseyside
Hi
Today at 1.30pm my mum sadly passed away. This cruel disease has taken her from me. I went from work to the care home and saw her , along with my brother and sister. I just feel empty, emotional and numb. This is my first death. I don't know why??? As a child My mum was security, there for me if if fell, there to cuddle, i felt safe, loved. Her life was devoted to there children's well being. I feel lost. Cry all the time. Oh, why???? I MISS YOU MUM.
@Andyseam I'm so sorry. My thoughts are with you.
 

Janedotgriff

Registered User
Aug 23, 2012
9
I’ve read so much like this and think I want to post this thread to help me track things.

About 3-4 weeks ago mum stopped eating and drinking. She then had a tiny bit before stopping again. She was then admitted with a chest infection 12 days ago and stopped altogether. We’ve managed tiny sips and half a glass of juice here and there.

Yesterday the consultant suggested she had about 2 months left. She’d been on several days of complete food refusal and limited fluids. She was also deteriorating and no longer mobile.

Today we got her out of bed (with difficulty) down to the day room in a wheelchair and spent 60 minutes playing with the doll. She had 40mls of yoghurt and about 140mls of juice. So it all feels different. As I type this I’m realising that my perspective has skewed somewhat if I think 140mls of juice is life changing...

She did quite a big wee which I also find confusing. The kidneys are finding fluid to process
 

Splashing About

Registered User
Oct 20, 2019
405
Mum far more stable than I’d expect. She’s still eating minimally but she’s not moving so I doubt her needs are much. She’s completely bed bound and no longer moving around in the bed and hanging over the edges. She‘s sleepy more often and quieter but still capable of feisty behaviour. She punched my daughter in the eye, batted her milk down the bed and swiped the yoghurt on the floor yesterday. However some days she accepts tiny teaspoons of puréed food and yoghurts and drinks milk happily all day. I’ve no idea what is happening weight wise (Never any staff around to ask and I’ve got no identifiable purpose in finding out) The rapid weight loss is no longer evident. She still has good colour. I can see us like this in a few months time. Somehow I’d never envisaged this stage of dementia...this loss of mental ability to move.
 

jugglingmum

Registered User
Jan 5, 2014
5,611
Chester
@Splashing About - I'm sorry your mum is still like this. It must be very hard to deal with.

I don't think we can ever second guess what is going to happen, in my time on TP I have read of this situation lasting a long time, and for others a sudden downturn happens and the PWD is gone in weeks from being fairly mobile.

I suspect the long time bit is not what you want to hear. Milk is very nutritious, so in this situation I'd count it as food.
 

Splashing About

Registered User
Oct 20, 2019
405
Yes I count it as food. Awhile ago I’d have said I couldn’t bear thinking of her lasting like this. I don’t like it now but I can bear it (because I’ve locked down my heart I think) :(

The reconciliation of facing losing a parent vs facing their continued dire quality of life with no hope seems to have been completed. Possibly I will crumble at the end. We shall see. I suspect I’ve mentally decided there is no end (it feels like that!) and so I’m not facing that every single day.
 

Moose1966

Registered User
Feb 10, 2017
143
Staffordshire
Yes I count it as food. Awhile ago I’d have said I couldn’t bear thinking of her lasting like this. I don’t like it now but I can bear it (because I’ve locked down my heart I think) :(

The reconciliation of facing losing a parent vs facing their continued dire quality of life with no hope seems to have been completed. Possibly I will crumble at the end. We shall see. I suspect I’ve mentally decided there is no end (it feels like that!) and so I’m not facing that every single day.
I absolutely agree with that moment of realisation that we could be in this for the long run . Mum is bedridden and legs contracted her fingers now are starting with rheumatoid arthritis and curling into her palms . GP saw her at NH yesterday and they’ve up her pain meds and will consider a patch. Mum at present can swallow pills so going the oral route for now . I never thought I’d still be visiting after last years days left situation, here we are .......mixed emotions YES , hate myself for negative thoughts YES , I want this all to end soon for mums sake and selfishly for me . I need to be able to live again without guilt creeping up on me, have a holiday booked in July but I still can’t get excited why does it feel wrong to look forward. I’m going to give myself a kick start on 1st March ....new month . Thoughts to all in this cruel limbo .
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
I absolutely agree with that moment of realisation that we could be in this for the long run . Mum is bedridden and legs contracted her fingers now are starting with rheumatoid arthritis and curling into her palms . GP saw her at NH yesterday and they’ve up her pain meds and will consider a patch. Mum at present can swallow pills so going the oral route for now . I never thought I’d still be visiting after last years days left situation, here we are .......mixed emotions YES , hate myself for negative thoughts YES , I want this all to end soon for mums sake and selfishly for me . I need to be able to live again without guilt creeping up on me, have a holiday booked in July but I still can’t get excited why does it feel wrong to look forward. I’m going to give myself a kick start on 1st March ....new month . Thoughts to all in this cruel limbo .
Not selfish at all
Compassion at the reality of the situation & what “a best interest” is & the reality of that.
As my friend kindly puts it “a natural conclusion!”
(((((((((((((((((((giant hugs ))))))))))))))))))))))
To you all x
 

Linbrusco

Registered User
Mar 4, 2013
1,606
Auckland...... New Zealand
My Mum is at this stage for just over a year.
The only physical changes are weight loss , now down to 55kgs ( 81/2st) , sleeping even more, and she is starting to get skin tears.
Mum is 79 in two weeks, and given it could be her last, we are having a small get together at Mums care home. Mums 2 sisters are coming.... other than us, the only two who visit.
We believe Mum is waiting for Dad (82) to go first, as she said he would never cope if it was the other way around.
After 4 yrs in care, Dad still thinks Mum will get better and come home :oops:
Dad is 82 and has mild mixed dementia, but worsening kidney disease.
 

Splashing About

Registered User
Oct 20, 2019
405
@Moose1966 yes I’ve done the whole “not looking forward to anything” thing. I’ve had a weeks holiday, Christmas, social events....all seemed unlikely to be enjoyed because of my mums imminent death. Except she hasn’t!

@Linbrusco this is so horrible isn’t it. I find it amazing that we nurture our health so carefully...ensuring good nutrition, exercise, drinking plenty, medication as needed and we move around, change positions, dress to adjust to the weather...and yet forget all of that and it’s possible to live for a very long time.

Mum has lost 7kg in 4 months which is quite remarkable considering how little she eats (I’d expect more) Being overweight appears to have been an advantage. She’s not had a cold, her BP is now normal and two persistent ailments which she took regular meds for (but no longer) do not show any symptoms. She also had cardiac disease and chronic kidney disease...no problem with either. It’s unbelievable
 

Moose1966

Registered User
Feb 10, 2017
143
Staffordshire
@Moose1966 yes I’ve done the whole “not looking forward to anything” thing. I’ve had a weeks holiday, Christmas, social events....all seemed unlikely to be enjoyed because of my mums imminent death. Except she hasn’t!

@Linbrusco this is so horrible isn’t it. I find it amazing that we nurture our health so carefully...ensuring good nutrition, exercise, drinking plenty, medication as needed and we move around, change positions, dress to adjust to the weather...and yet forget all of that and it’s possible to live for a very long time.

Mum has lost 7kg in 4 months which is quite remarkable considering how little she eats (I’d expect more) Being overweight appears to have been an advantage. She’s not had a cold, her BP is now normal and two persistent ailments which she took regular meds for (but no longer) do not show any symptoms. She also had cardiac disease and chronic kidney disease...no problem with either. It’s unbelievable
They certainly are resilient, I’ve had two really bad colds and continued to visit mum as there is only me .......she’s not even had as much as a sniffle. I think they are a generation that are tough as old boots . ❤
 

Linbrusco

Registered User
Mar 4, 2013
1,606
Auckland...... New Zealand
My Mum has definitely improved health wise since being in Hospital Care.
All her medications stopped, except for low dose anti b to keep UTI’s away and just 7.5mg daily ( was 75mg when in Dementia Care) of Quetiapine for agitation and to help her sleep at night.
Only one slight cold in a year.
Not one UTI.
Her white blood cell counts have dropped significantly, as she was diagnosed with a form of Leukemia in 2011 which caused them to sky rocket , so its been a wait & watch for 9yrs.
Mum is starting to have skin tears though, and they are having such a hard time cutting her nails, as Mum just recoils at the mere attempt to cut them.
But long nails and she scratches her head & face.
Long toe nails and they curl under and dig into the skin.
The Podiatrist doesnt like to use any force to hold her hands or feet.
Any ideas?
 

Louise7

Registered User
Mar 25, 2016
1,776
Could a mild sedative be prescribed when the podiatrist is visiting, and staff could cut her finger nails at the same time? Mum's GP prescribed a low dose of diazepam for use during dental appointments so maybe something like that would help?
 

Splashing About

Registered User
Oct 20, 2019
405
I need to do mums nails soon so I’ll be watching for advice. I wonder about soaking in warm water to soften them as they are so hard and once cut they will be sharp. But getting her hands into water would be nigh on impossible. My sister’s carers just file them. They sit there holding hands with a rough emery board and just file away....that makes them neat and softens the edges.
 

Linbrusco

Registered User
Mar 4, 2013
1,606
Auckland...... New Zealand
Could a mild sedative be prescribed when the podiatrist is visiting, and staff could cut her finger nails at the same time? Mum's GP prescribed a low dose of diazepam for use during dental appointments so maybe something like that would help?
Mum reacts quite badly to any of the azepam meds.
Thats why they had to try her with quetiapine anti psychotic when going through major anxiety & aggression when in Dementia Care.
Hopefully something can be achieved :oops:
 
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