How long is this piece of string? ?

garfield3

Registered User
Jun 30, 2018
417
0
Hello fellow journeymen,

Hope you are all surviving on this journey . Sending strength if it is difficult and hang in there .

Just a quick question . Mum is 94 and on finger food and on monitored liquids. Sleeps a lot and is put to bed in the afternoon. She is imobile , doubly incontinent and talks rubbish. About 6-10 words. How long does this go on for? Sounds like I want her to die, I don't but hopefully you know what I mean.

Thanks for listening.
 

nitram

Registered User
Apr 6, 2011
30,081
0
Bury
The piece of string can be very long.
It is quite often shortened by comorbidities taking over, aspiration pneumonia, kidney infection. heart failure....
Have a word with her GP about her prognosis.
 

Linbrusco

Registered User
Mar 4, 2013
1,694
0
Auckland...... New Zealand
My Mum is 78.
She has been at this stage since September 18, losing all mobility by Jan this year.
Things looked pretty dire in Jan, barely eating 2 or 3 spoonfuls of pureed food a day, a carton of Fortasip over the course of the day. She also had a chest infection.
In Feb she was moved from Dementia Care to Hospital Care.
Shes picked up a bit, now sleeping a bit less, eating a bit more and for the first time in 6 mnths has put on weight.
When I spoke to the Dr in Feb about Mum, and realistically how long she might be with us, he said maybe a year but didnt really like to put a time frame on it.
Now the Dr is saying that year is now anybodys guess barring a major medical event or she starts to have swallowing problems.
She still tends to hold food in her mouth.
 

garfield3

Registered User
Jun 30, 2018
417
0
The piece of string can be very long.
It is quite often shortened by comorbidities taking over, aspiration pneumonia, kidney infection. heart failure....
Have a word with her GP about her prognosis.

My Mum is 78.
She has been at this stage since September 18, losing all mobility by Jan this year.
Things looked pretty dire in Jan, barely eating 2 or 3 spoonfuls of pureed food a day, a carton of Fortasip over the course of the day. She also had a chest infection.
In Feb she was moved from Dementia Care to Hospital Care.
Shes picked up a bit, now sleeping a bit less, eating a bit more and for the first time in 6 mnths has put on weight.
When I spoke to the Dr in Feb about Mum, and realistically how long she might be with us, he said maybe a year but didnt really like to put a time frame on it.
Now the Dr is saying that year is now anybodys guess barring a major medical event or she starts to have swallowing problems.
She still tends to hold food in her mouth.

Thanks for your replies. Sometimes on this journey you can feel so alone. I think I already knew but it is good just to get other views on it.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,452
0
Kent
Thanks for your replies. Sometimes on this journey you can feel so alone. I think I already knew but it is good just to get other views on it.

You are not alone @garfield3. There are hundreds wondering about the same piece of string.

Sadly we are the ones who have to live with this pain and there are times when we feel we are the only ones enduring it.

I always come to Talking Point when I feel the need. I`m glad you did too. It won't make the piece of string any easier to measure but may help you to know you`re in good company.
 

Timeout

Registered User
Feb 10, 2012
204
0
Our piece of string has been about 15 years since the very first signs, 13 years since diagnosis, 6 years since going into care, 5 years since double incontinece, 4 years since loss of mobility, 3 years of being unable to feed herself, 2 years of not being able to speak and a year of being fully bedbound.
She’s survived multiple infections (chest, skin, kidney) and has always eaten well, even when very unwell so she’s not lost any weight.
I feel so sad to think that she will eventually have to get to the point of either forgetting to breathe or swallow for this to end. Unimaginably cruel.
 

garfield3

Registered User
Jun 30, 2018
417
0
You are not alone @garfield3. There are hundreds wondering about the same piece of string.

Sadly we are the ones who have to live with this pain and there are times when we feel we are the only ones enduring it.

I always come to Talking Point when I feel the need. I`m glad you did too. It won't make the piece of string any easier to measure but may help you to know you`re in good company.

Thanks for the kind words. This site is wonderful with so many understanding and kind people.
 

garfield3

Registered User
Jun 30, 2018
417
0
Our piece of string has been about 15 years since the very first signs, 13 years since diagnosis, 6 years since going into care, 5 years since double incontinece, 4 years since loss of mobility, 3 years of being unable to feed herself, 2 years of not being able to speak and a year of being fully bedbound.
She’s survived multiple infections (chest, skin, kidney) and has always eaten well, even when very unwell so she’s not lost any weight.
I feel so sad to think that she will eventually have to get to the point of either forgetting to breathe or swallow for this to end. Unimaginably cruel.


My piece of string doesn't have as many knots in it like yours. It has been unravelling for about 13yrs, though.

Hang in there on your journey.
 

Babymare01

Registered User
Apr 22, 2015
315
0
The piece of string is oh so long sadly. Mum hasn't recognised me for some 4 years or so. Bed bound for nearly 3, doubly incontinent, has to be fed pureed food and drinks and barely opens her eyes. I want mum to quietly go into a never ending peaceful sleep and I no longer feel guilty for feeling that. Its cruel just cruel.

Hugs and strength to you all on this long painful journey xx