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End of life palliative care

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
Have now got to prove CCG funding under fast track system with care home !
Good job I’m a ****** for emailing & asking the obvious otherwise I’d be liable for 24/7 nursing care in a few weeks time . Care home said a lot of folks being caught out with this system !

I have emails !!!
& I’m going to use them !
not signing any contracts as the CCG is the contract holder under CHC funding not mum 🤦‍♀️

😵💫😳🤬💔
my file is still growing
Mmm I have discovered its wise not to trust any of the organisations involved they all seem to be very good and passing the buck.

Hoping this gets sorted
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
Mmm I have discovered its wise not to trust any of the organisations involved they all seem to be very good and passing the buck.

Hoping this gets sorted
Me to I trust no one !
I always send email confirmation of conversations on the phone & ask for clarification on any unclear points . Often the request for clarification goes unanswered but at least I have a “paper trail”.
if I don’t get a clear answer then I don’t agree to it on Mums behalf as LPA .
im never going to win a popularity contest at least I know I’m doing the right thing in Mums best interests .
shame that other in this Social care & health system cannot do what’s in the PWD best interests.

hopefully by highlighting my experiences i can help someone else navigate the system.
 

Palerider

Registered User
Aug 9, 2015
2,722
0
North West
Me to I trust no one !
I always send email confirmation of conversations on the phone & ask for clarification on any unclear points . Often the request for clarification goes unanswered but at least I have a “paper trail”.
if I don’t get a clear answer then I don’t agree to it on Mums behalf as LPA .
im never going to win a popularity contest at least I know I’m doing the right thing in Mums best interests .
shame that other in this Social care & health system cannot do what’s in the PWD best interests.

hopefully by highlighting my experiences i can help someone else navigate the system.
Its difficult as there are different approaches across the country -its like a post code lottery. There is very little equality when you read the threads on this forum and the numerous problems people have had trying to work their way through what is a mire at a time when they don't need it.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
Honestly , I have kind of given up on battling the system now.

Having provided medical evidence of pain & the background , the reasons why Mum was stopped the pain patch due to falls risks at home I’m walking away from it all!

As LPA we are still not being communicated with it seems, I’m tired & want this to end.

Mums slowly slipping away & when I visit she tells me to go. Some things never change!
it’s silly but it’s soo hurtful.

The home is lovely & the care is fab.

The hospital still haven’t released the info we have requested so the care home have only the hospitals input on discharge!
we have been labelled by the hospital & that label will travel.

I have done my best.
 

jennifer1967

Registered User
Mar 15, 2020
6,306
0
Southampton
Honestly , I have kind of given up on battling the system now.

Having provided medical evidence of pain & the background , the reasons why Mum was stopped the pain patch due to falls risks at home I’m walking away from it all!

As LPA we are still not being communicated with it seems, I’m tired & want this to end.

Mums slowly slipping away & when I visit she tells me to go. Some things never change!
it’s silly but it’s soo hurtful.

The home is lovely & the care is fab.

The hospital still haven’t released the info we have requested so the care home have only the hospitals input on discharge!
we have been labelled by the hospital & that label will travel.

I have done my best.
sorry to hear that but for your own health and for yourself, its a good decision to step away from it. you have achieved all that you can for your mum. you should be proud of yourself
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
Balancing your own health & visiting it’s a fine line & to be honest I get no pleasure from it. I want to say so much but there is no point. So another guilt issue … I visit Mum & I feel sadness for what we have never had. Mum doesn’t want to hold my hand or a cuddle from me, it’s such a negative experience & I hate that.

All the low points of life seem to be overwhelming & yet I should be pleased that Mums close by & out of hospital ; but the constant battle over the years means I just feel bitter & resentful. I do not like myself for feeling like this.

I had that connection with Dad & it’s so absent with Mum that I am ashamed. The years of verbal abuse & Mum lashing out at me have eroded any relationship over time, to now I just pity Mum. I sit with her & have soo much I want to say & yet I say nothing.

How can I sit & pour out how I feel ? I can’t it’s pointless, yet I need to say how much Mums rejection of me has hurt & even now I try to overcompensate ensuring fresh flowers each week & favourite squash for drinks.

I want this to end this dementia journey I want the natural conclusion the finality so I can properly grieve, so that I can move on with my own life. Start living.

The new GP at the surgery has decided that there is no outward signs of pain so no pain patch , & Mum can’t swallow pain meds. I’m finished battling , I have provided all medical evidence etc.
Im done

I have done my best .. & I can’t keep fighting the system anymore.
 

jennifer1967

Registered User
Mar 15, 2020
6,306
0
Southampton
Balancing your own health & visiting it’s a fine line & to be honest I get no pleasure from it. I want to say so much but there is no point. So another guilt issue … I visit Mum & I feel sadness for what we have never had. Mum doesn’t want to hold my hand or a cuddle from me, it’s such a negative experience & I hate that.

All the low points of life seem to be overwhelming & yet I should be pleased that Mums close by & out of hospital ; but the constant battle over the years means I just feel bitter & resentful. I do not like myself for feeling like this.

I had that connection with Dad & it’s so absent with Mum that I am ashamed. The years of verbal abuse & Mum lashing out at me have eroded any relationship over time, to now I just pity Mum. I sit with her & have soo much I want to say & yet I say nothing.

How can I sit & pour out how I feel ? I can’t it’s pointless, yet I need to say how much Mums rejection of me has hurt & even now I try to overcompensate ensuring fresh flowers each week & favourite squash for drinks.

I want this to end this dementia journey I want the natural conclusion the finality so I can properly grieve, so that I can move on with my own life. Start living.

The new GP at the surgery has decided that there is no outward signs of pain so no pain patch , & Mum can’t swallow pain meds. I’m finished battling , I have provided all medical evidence etc.
Im done

I have done my best .. & I can’t keep fighting the system anymore.
you have done better than i would do. i dont want to see, hear and definitely no caring of any description for my father. i was thinking of writing him a letter and put it in his coffin so all the hurt goes with him. i never want a penny out of him either. im no hypocrite. i cant even go to family funerals in case hes there.
for you to visit, hold hands, be in the same room is testament to your tenacity and trying to look for signs that she understands what she has done. you have done more than any should expect. doing your best is an understatement of what you have actually done. youve gone above and beyond and i hope that you will have peace and acceptance you did her proud
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
you have done better than i would do. i dont want to see, hear and definitely no caring of any description for my father. i was thinking of writing him a letter and put it in his coffin so all the hurt goes with him. i never want a penny out of him either. im no hypocrite. i cant even go to family funerals in case hes there.
for you to visit, hold hands, be in the same room is testament to your tenacity and trying to look for signs that she understands what she has done. you have done more than any should expect. doing your best is an understatement of what you have actually done. youve gone above and beyond and i hope that you will have peace and acceptance you did her proud
Acceptance .. it’s not always easy is it? I wrote a letter to my Dad explaining how I loved him & thanking him for always being there for me, but I don’t think I could put into words or want to write down the mixed bag of emotions I feel towards Mum.
Accepting that I loved unconditionally has been hard enough at times. My Mum will carry to the grave her issues, I hope that she will find peace soon. Mum is frightened of dying, how sad is that ? I’m not frightened of dying but am not ready to leave my loved ones yet.
My Grandmother & Grandfather were terrified of dying like Mum is , guess it’s a learnt behaviour. My Dad just didn’t want to leave me, & held on as long as he could.
so yes acceptance … I’m working on it
Thank you , your words have unlocked some things for me today. It has made me feel more settled in my own thoughts
xx
(((hugs)))
 

jennifer1967

Registered User
Mar 15, 2020
6,306
0
Southampton
Acceptance .. it’s not always easy is it? I wrote a letter to my Dad explaining how I loved him & thanking him for always being there for me, but I don’t think I could put into words or want to write down the mixed bag of emotions I feel towards Mum.
Accepting that I loved unconditionally has been hard enough at times. My Mum will carry to the grave her issues, I hope that she will find peace soon. Mum is frightened of dying, how sad is that ? I’m not frightened of dying but am not ready to leave my loved ones yet.
My Grandmother & Grandfather were terrified of dying like Mum is , guess it’s a learnt behaviour. My Dad just didn’t want to leave me, & held on as long as he could.
so yes acceptance … I’m working on it
Thank you , your words have unlocked some things for me today. It has made me feel more settled in my own thoughts
xx
(((hugs)))
glad to help in some small way 🤗 🕊️
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
“I guess you can call it the blues”
think that’s a quote ( ish) from Elton John song

Need to sort head out !
Sometimes I struggle, & now I’m in that place .

Wanting to not get up/ wake up/ mix / eat

What a sad sausage I am !! I’m fed up with myself !!!!
 

Wildflowerlady

Registered User
Sep 30, 2019
541
0
Hi @DesperateofDevon I think would be fair to say we all can feel like that at times I definitely do am feeling like that too right now. Oh for a lie in bed and less worries but I keep plodding along. I no longer have my PWD as dad passed in January but partner is elderly and other problems but of a different kind. A good day will be along sometime and life will feel a bit better but in the meantime don't be hard on yourself. Sending you a hug 🤗.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
Hi @DesperateofDevon I think would be fair to say we all can feel like that at times I definitely do am feeling like that too right now. Oh for a lie in bed and less worries but I keep plodding along. I no longer have my PWD as dad passed in January but partner is elderly and other problems but of a different kind. A good day will be along sometime and life will feel a bit better but in the meantime don't be hard on yourself. Sending you a hug 🤗.
(((Hugs)))
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
Well for Aged Mother no change bar the slow decline towards the natural conclusion. It’s horrid to watch & I find it inhumane… no quality of life, sips of high calorie shakes seem to keep Mum alive. I seriously do not believe this is caring for somebody.
It distresses me beyond belief
 

Wildflowerlady

Registered User
Sep 30, 2019
541
0
Hi @DesperateofDevon when dad was at EOL he hadn't eaten anything for at least 4 weeks he was sent back to the CH by hospital nil by mouth which I did find upsetting. I have felt more understanding of that decision as time has gone by. Dad had been turning down even a offer of a little yogurt as hospital did ask him but I was told he could aspirate into his lungs. I think the doctor at hospital only agreed to the offers being made because at the time I found it hard to accept that they weren't trying to feed him. Dad clearly didn't want anything as refused and he became so gaunt which I found terrible to see. It was amazing how long he went on like that but CH said his heart was strong. In the end I just wanted it all to end and for dad to pass peacefully which thankfully he did. I can understand your feelings that your mum is just kept going when the end is probably pretty close and you feel she is made to carry on. My thoughts are with you and I'll send you a hug.🤗
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,026
0
High Peak
Oh, I know what you mean! When carers would say, 'Your mum seems fairly settled but she isn't eating much...' I'd be thinking, 'No! How can you let a human being exist like this?'

I too found it distressing, harrowing and unforgiveably cruel.

I certainly wouldn't have allowed one of my cats to suffer for 3+ years as my mother did :(
 

CAL Y

Registered User
Jul 17, 2021
75
0
A few years ago, most people were up in arms about the latest “care pathway “ because of the medical staff not feeding people at the end of life.
It is only through this forum that I now realise the reason for that.
Feeding people is a very emotional subject and we all feel so much guilt at seeing our loved ones fade in such a way.
I‘m very glad that I now know the truth of this i.e. It is the body shutting down and the person does not feel hunger or thirst.
My husband is on end of life care with dementia and cancer.