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The roller coaster of the end

Izzy

Volunteer Moderator
Aug 31, 2003
61,095
68
Dundee
Goodness. Roller coaster is the only way to describe it. You both must be wrung out. x
 

Ann Mac

Registered User
Oct 17, 2013
3,693
Just to let you know I'm thinking of you and your Mum, Terry - can't begin to imagine how this 'rollercoaster' is affecting you, hun xxxxxx
 

ellejay

Registered User
Jan 28, 2011
4,018
Essex
Hope you don't mind me popping in.
Last Saturday after being found unconscious & unresponsive in her CH, my mum was taken to hospital, CT scan, then admitted.

She came to, but slept mostly. After 3 days, they said she was severe end stage & she was to be returned to the CH with Palliative care to be put in readiness.

The CH staff aren't convinced, mum is as she was before.

After reading others experiences, I'm not rushing to tell people.

A roller coaster it certainly is.

Lin x
 

lemonjuice

Registered User
Jun 15, 2016
1,534
England
This morning's visit
Wow your mother has really improved. When my mother 'improves' after one of her 'incidents' all it means is that she is awake more, as opposed to be very sleepy and sometimes even 'tries' to 'communicate'.

I'm another one with a 'tough old bird', who always manages to 'come through' but nowhere near to any real quality of life.
 
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lemonjuice

Registered User
Jun 15, 2016
1,534
England
Hope you don't mind me popping in.
Last Saturday after being found unconscious & unresponsive in her CH, my mum was taken to hospital, CT scan, then admitted.

She came to, but slept mostly. After 3 days, they said she was severe end stage & she was to be returned to the CH with Palliative care to be put in readiness.

The CH staff aren't convinced, mum is as she was before.

After reading others experiences, I'm not rushing to tell people.

A roller coaster it certainly is.

Lin x
very wise. As I pointed out to the assessor, if I'd applied for a Fast-Track everytime Mum has had a downturn in the past 2 years they'd be fed up of me by now.

Am actually thinking of doing that now she's had her 'just in case meds' for over 18 months now and 3 weeks ago the Dr renewed all her emergency notifications because he thought that time she was on her way out. Perhaps they'll get so fed up of me applying they might actually agree that my mother's condition is now 'a medical need of a complex and unpredictable nature'?
Mind you I heard of someone the other day who was told that their condition was 'predictably 'unpredictable'!':confused: He did point out that that didn't make sense to use those two opposing statements together.
 

Emomam

Registered User
Nov 13, 2014
116
Yorkshire
I've just been on holiday for 10 days in Mexico. I didn't even decide I would go until the day before we flew. I panicked as mum had been in bed for 5 weeks and I thought if I didn't go every day she would decline and give up. I hard regular updates from the home and managed to relax for a week. My worst fears were realised and mum got taken into hospital with pneumonia. However, because if the quick interventions of the staff it was only mild and she was returned to the home the next day. I came back as planned 2 days later and she was fine.
So the moral or the story is, if she is being well looked after and in a good home, whether you are there or not they will still look after her. But if something does go wrong they will inform you.
I spent so much time agonising whether to go or not and played out all the bad senarios in my head. Don't do the same as me just go and be with your family.
 

MrsTerryN

Registered User
Dec 17, 2012
769
Hope you don't mind me popping in.

The CH staff aren't convinced, mum is as she was before.

After reading others experiences, I'm not rushing to tell people.

A roller coaster it certainly is.

Lin x
Was this her first turn like that ?
That is kinda how mum was on the Saturday. Unresponsive and not eating or drinking.

I would as still tell my uncle and mums best friend but I think I might not ,hopefully, stress as much.
At least I now have everything done except the actual service notes.
The order of service and mum's details are all primed .

Definitely come on in. It seems to be rather common this situation
 

MrsTerryN

Registered User
Dec 17, 2012
769
I've just been on holiday for 10 days in Mexico.
So the moral or the story is, if she is being well looked after and in a good home, whether you are there or not they will still look after her. But if something does go wrong they will inform you.
I spent so much time agonising whether to go or not and played out all the bad senarios in my head. Don't do the same as me just go and be with your family.
Mum is in amazing nursing home. Even with all her previous aggression, verbal and physical , they think the world of her.
I trust them.
My husband would have been fine ableit disappointed but I would have been disappointed for not having this, most likely, last time on holidays with my son.
Thank you. I will go and now even if I was home I couldn't change the outcome
 

ellejay

Registered User
Jan 28, 2011
4,018
Essex
Was this her first turn like that
They did think she'd had a stroke, hence the scan, but she hadn't. I asked why she would be unconscious like that , but no one could say for sure.

Mum does seem to have lost a bit more of herself, but was still able to indicate on my last visit that she wanted a bag like mine :)

Lin x
 

lemonjuice

Registered User
Jun 15, 2016
1,534
England
They did think she'd had a stroke, hence the scan, but she hadn't. I asked why she would be unconscious like that , but no one could say for sure.

Mum does seem to have lost a bit more of herself, but was still able to indicate on my last visit that she wanted a bag like mine :)

Lin x
Could be all sorts of reasons for unconsciousness, especially if they have no ability to tell anyone they are in pain. Some of my mother's ASCs are probably a result of a bad migraine which, because she hasn't received medication, has become so bad it's caused her to lose consciousness. In her case they are so frequent and she is so poorly they don't investigate any more. Usually now we can tell by her 'recovery time and behaviour afterwards' if they are TIAs or seizures as her behaviour is very different. But this is only after many episodes and trying to be observant.

Kidney problems can cause episodes of unconsciousness I believe and originally my mother's first episode was caused by edema - not peripheral edema but internal, which threw everybody off as her ankles were so neat and trim no-one suspected.

At least your mother seems to still be able to communicate something, mine lost that ability some years ago. She really is just a body breathing now.
 

MrsTerryN

Registered User
Dec 17, 2012
769
Mum does seem to have lost a bit more of herself, but was still able to indicate on my last visit that she wanted a bag like mine :)
Sounds like something my mum would do :)

At least your mother seems to still be able to communicate something, mine lost that ability some years ago. She really is just a body breathing now.
That is whatI worry about :(



Have to say i am amazed how many people and how many times we go through this

Mum is still improving. Actually eating two course breakfast now
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
Seems like "all is back to normal" round here with mum

I hate with a passion the very high and the very low parts of this roller coaster that at some point we are all on.

Proud that mum is a TOB

Saddened that mum is a TOB

and if truth be told, very angry at mum for being a TOB this time. I guess that's a reaction to high stress....





Sent from my iPhone using Talking Point
 

lemonjuice

Registered User
Jun 15, 2016
1,534
England
Seems like "all is back to normal" round here with mum

I hate with a passion the very high and the very low parts of this roller coaster that at some point we are all on.

Proud that mum is a TOB

Saddened that mum is a TOB

and if truth be told, very angry at mum for being a TOB this time. I guess that's a reaction to high stress....

Sent from my iPhone using Talking Point
Just wanted to post sympathies, as I feel pretty much the same. My mother always looked after her health, keeping fit even well into her dementia. She would be so proud and be saying, "Look how well I looked after myself, so I'm fit and healthy in my old age." However without a brain to tell her what to do with that health she is unable to benefit, other than just to 'keep going through the motions of living'.
I find that poignantly sad.
And yes sometimes I get quite cross when she has 'fought through'. to know that we will have to go through this again.
 
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Soobee

Registered User
Aug 22, 2009
2,734
South
Please can I second the hugs to you all? It is such a tough time with the ups and downs. xx
 

Emomam

Registered User
Nov 13, 2014
116
Yorkshire
These TOB'S are amazing and I have no idea where their strength comes from.
We do what we can but I wish we didn't have to but there again we wouldn't have had this time with them and I wouldn't change that. I've had some of the best and worst times with mum over the last 6 years just like you have.
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
Mum now over 24 hours without fluids. All medications stopped except morphine.

When I ring to find out how she is, I quite expect to hear she is up and dressed eating porridge, but this time I don't think she has any "fight" left


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