• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

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

Splashing About

Registered User
Oct 20, 2019
405
@DoingthebestIcan you certainly live up to your name.

This week so far I’ve worked 41 and a half hours. Today I’m going to complete the week working 7- 5:30 (probably run over...) not every week is this busy and from next week I’m going to really try and take some time back to spend with family. But I do find the working juggle very difficult
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
@DoingthebestIcan you certainly live up to your name.

This week so far I’ve worked 41 and a half hours. Today I’m going to complete the week working 7- 5:30 (probably run over...) not every week is this busy and from next week I’m going to really try and take some time back to spend with family. But I do find the working juggle very difficult
juggling life etc is something I’m regularly failing at .... so I have lowered my expectations & just said actually I need time out! Probably why I have a stinking cold! I relaxed!!!

still it’s one way of recharging batteries. Meanwhile I don’t feel guilty about the fact I can’t care for my PWD personally- I must be moving on ! I am doing my best in the situation I find myself in! No one can do anymore.

I’m sure if I didn’t work I could commit more time to the caring role but at 51 my working years stretch ahead of me. Retirement seems an unachievable goal at the moment! I try not to think about the future & just hope I manage to get through each day without feeling totally exhausted by life’s little foibles!
 

Splashing About

Registered User
Oct 20, 2019
405
Today: no urine again. Some ice-cream eaten and some milk and juice.

She looks peaceful and well, but could not be roused all afternoon. Last week she smelt ketoxic-today all fine. Skin looks ok for someone so dehydrated, pulse is regular (thank you pacemaker) and strong. She’s stopped all meds. It’s a miracle of biology.

I’m struggling with the mental challenge of looking at someone who looks calm and well (having coped with angry and distressed for so long this is good) balanced against the information that she is supposedly end of life. Each day...take it one at a time.
 

Moose1966

Registered User
Feb 10, 2017
143
Staffordshire
I’ve lost count but I think we are 5-6 weeks into this. Only 100ml fluids today, no urine output and very sleepy but still quite strong when fighting over the bedding. I like to kiss her when I leave and she let me but then loudly said GET OUT, JUST GET OUT

I’m not sensitive about this now. Fortunately
Just seen this post and my mum is the same stage . I agree with suspended bereavement that’s so suitable ! My mum also will be asleep all the time so I sit , hold her hand brush her hair etc and then she will just like yours say Go get out just go it’s horrible to hear those words from someone who you love , I know it’s not meant but ouch words hurt ☹ I usually say ok I’m going now I will see you tomorrow.
 

Splashing About

Registered User
Oct 20, 2019
405
Just seen this post and my mum is the same stage . I agree with suspended bereavement that’s so suitable ! My mum also will be asleep all the time so I sit , hold her hand brush her hair etc and then she will just like yours say Go get out just go it’s horrible to hear those words from someone who you love , I know it’s not meant but ouch words hurt ☹ I usually say ok I’m going now I will see you tomorrow.
This forum is a revelation because so many of us share the very same experiences and I never anticipated some of the details or difficulties that we are having
 

Moose1966

Registered User
Feb 10, 2017
143
Staffordshire
This forum is a revelation because so many of us share the very same experiences and I never anticipated some of the details or difficulties that we are having
Yes I’ve visited many times over the last 3 years , usually when I’m feeling alone with illness and symptoms. Family are a great support but sometimes I choose not to discuss it with them maybe trying to keep my home and loved ones protected and leave the horrors at the door . Here I find all the situations I’m dealing with somebody somewhere has or going through the same . Phew I’m not on my own , this roller coaster is very full of troubled but amazingly honest people.
 

Moose1966

Registered User
Feb 10, 2017
143
Staffordshire
Yes I’ve visited many times over the last 3 years , usually when I’m feeling alone with illness and symptoms. Family are a great support but sometimes I choose not to discuss it with them maybe trying to keep my home and loved ones protected and leave the horrors at the door . Here I find all the situations I’m dealing with somebody somewhere has or going through the same . Phew I’m not on my own , this roller coaster is very full of troubled but amazingly honest people.
Mums illness has been a life changing journey for me , thinking of all on here who are on it also .
 

Splashing About

Registered User
Oct 20, 2019
405
Mums illness has been a life changing journey for me , thinking of all on here who are on it also .
I don’t think anyone has any idea of what dementia/Alzheimer’s truly means unless they experience it day to day. The gentle idea of forgetfulness, confusion and maybe getting a bit lost... most of us have experienced really horrible things along with a society that fears the financial consequences and thus puts up barriers rather than support. The financial cost of dementia to many individuals is huge. It’s not normal ageing- it’s an illness and you’re penalised
 

Splashing About

Registered User
Oct 20, 2019
405
I’m posting because it helps me record where things are. Mum started eating better this week and seems calmer. Every day is different but I sense we’ve not exactly turned a corner but we’ve put the brakes on heading down the road we’re on.
 

Moose1966

Registered User
Feb 10, 2017
143
Staffordshire
I’m posting because it helps me record where things are. Mum started eating better this week and seems calmer. Every day is different but I sense we’ve not exactly turned a corner but we’ve put the brakes on heading down the road we’re on.
It does help to post on here it’s a good timeline and also support from others is tremendous and stops you feeling so alone.
 

Splashing About

Registered User
Oct 20, 2019
405
So we are just over a month in the nursing home. She is completely bed bound now, sometimes very sleepy, sometimes chatter chatter and awake all night. Mood variable but 50% can be cross which is hard. Eating mostly and drinking well. My daughter is finding this limbo harder than me. She is allegedly end of life but seems stable. We all want to know what the future holds, I have work commitments and a couple of days away and constantly wonder should I cancel... but we could be like this months. Then I panic that it’s days...and want to spend all day there

Still muttering to myself as it’s a good diary for me. :p
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
So go have a life! She says - but you could’ve in the same position in 6 months time!
Dad about to be assessed for nursing care
Off his meds for a couple of months now & unable to eat solids or feed himself! The resilience of the elderly astounds me!

I’m starting to put me & the family a bit more first! x
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
My daughter finds this stage harder & slowly is accepting the end stage. When youth & life is full of promise it’s difficult to accept the other end of the life cycle
X
 

Splashing About

Registered User
Oct 20, 2019
405
My daughter finds this stage harder & slowly is accepting the end stage. When youth & life is full of promise it’s difficult to accept the other end of the life cycle
X
It’s difficult to accept it at my age because it seems to bring the awareness of my own mortality! Your daughter and mine could compare notes.

I am making plans. I’ve got a week away in Feb and two days in Jan but feel panicky about both. For the last two years I’ve been the same every time I’ve been away but we’re a bit further down the line. I think you have to live (if you are able) because I look at the future and wonder if I’ll be doing this again with spouse and then I won’t be able to.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
It’s difficult to accept it at my age because it seems to bring the awareness of my own mortality! Your daughter and mine could compare notes.

I am making plans. I’ve got a week away in Feb and two days in Jan but feel panicky about both. For the last two years I’ve been the same every time I’ve been away but we’re a bit further down the line. I think you have to live (if you are able) because I look at the future and wonder if I’ll be doing this again with spouse and then I won’t be able to.
I am hoping to get away for a night in January!
It’s what I’ve asked for from Santa!
Hope he’s listening!!!


As for mortality.... I’m not ready to shuffle towards any finality!

Lots of things going wrong all the time & im just being more relaxed ( after quick paddy !) about life.

well let’s not run before we can walk!
 

Splashing About

Registered User
Oct 20, 2019
405
I am hoping to get away for a night in January!
It’s what I’ve asked for from Santa!
Hope he’s listening!!!

Lots of things going wrong all the time & im just being more relaxed ( after quick paddy !) about life.

well let’s not run before we can walk!
I’ve taken matters into my own hands...I’m Santa and him indoors is getting a weekend away for his Christmas present. He’s taking me I hope! :eek:
 

Splashing About

Registered User
Oct 20, 2019
405
Aw @DesperateofDevon so poignant reading that last post :(

I feel my mum has deteriorated in the last 10 days. She isn’t eating much now...enough to keep going but no meals. She eats spoonfuls of puddings etc She likes drinking milk but not a lot else. Colour still good and still physically active for someone bed bound e.g. waves legs in the air and can hold hands quite firmly.

I feel like she could last another 3 months. I also wonder if I’ll get a call tonight. Both thoughts are very difficult. Christmas has been quite forced and yesterday was tearful for me.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Aw @DesperateofDevon so poignant reading that last post :(

I feel my mum has deteriorated in the last 10 days. She isn’t eating much now...enough to keep going but no meals. She eats spoonfuls of puddings etc She likes drinking milk but not a lot else. Colour still good and still physically active for someone bed bound e.g. waves legs in the air and can hold hands quite firmly.

I feel like she could last another 3 months. I also wonder if I’ll get a call tonight. Both thoughts are very difficult. Christmas has been quite forced and yesterday was tearful for me.
It’s so difficult isn’t it? No wonder you feel tearful. I know with Dad that his resilience surprised me, along with how little he needed to sustain himself.

I think you are right in that your Mums possibly got a few months, & I know how I felt every time the phone rang .....

All I can say is be kind to yourself, you know where I am & it would be lovely to meet up again.

sending you love & strength
((((((((((Big hugs))))))))))
Xxx
 

canary

Registered User
Feb 25, 2014
11,656
South coast
The last stage of dementia is horrible. It can go on a surprisingly long time before reaching End of Life.
No-one knows how long it will go on for and even when they deem to reach End of Life, sometimes they can rally.
I was told three times that Mum had reached end of life, but she rallied on the first two occasions. On the third, of course, she didnt, yet I somehow kept expecting it.
I am sure her home will know when its truly the end and call you, so make sure you eat and sleep
(((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))
 

Recent Threads

Members online

Forum statistics

Threads
113,490
Messages
1,661,413
Members
64,529
Latest member
DebA