Why isn’t this end of life?

[DesperateofDevon]

Hi folks long time no post. I’m puzzled & could do with some feedback/ advice
Mum is now down to 7 stone ( from 12) & rapidly losing weight. Needs assistance drinking /feeding, doubly incontinent, not weight baring ,confused, agitated at night & sleepy during day , meds often need to be placed in mouth & atm in hospital awaiting a D2A bed after fall at home. I questioned the social care package in place 4 visits a day as not being adequate, social services say it is. We have typed up carers diary , got SWAST statements etc documenting aggression & all the above issues & are appealing CHC assessment.
Today got through to the ward & Mums not eating a teaspoon of hot chocolate this morning & been asleep since. Cant talk on a phone & hasn’t been able to for months, hospital has no visitor policy unless exceptional circumstances. Was informed to contact Mums social worker for updates… we have Health & Welfare LPA!(& finance)
Honestly I believe Mums at end stage dementia & is at end of life but the hospital say no, she’s not days from death. Covid being used for months as an excuse to not provide more a more complete social care package. Cant even get a hospital bed for Mum at home so the risk of aspirational pneumonia high as she can’t always sit up or stay sitting up.
Have contacted PALS, GP, Social Services, Complex Care & Dementia Team requesting help & assessments as 4 carers a day in mums home isn’t enough, Mum lives 125 miles away from us & now doesn’t have the capacity to make decisions. Social services say it’s in her best interests to remain at home , we disagree with the current package of care in place.
We have had to fight for every bit of help & provide evidence for years not making us popular, but now it’s become ridiculous ..
I am relieved Mums in hospital even though a fortnight ago she was taken in for head CT - (so aggressive that it was never done) it means she’s got 24/7 care atm.
I truly don’t think a D2A bed is appropriate & the Complex Care team haven’t assessed her since she’s been in hospital , 2 ward moves & now in a community hospital none of which we where informed of!
I just want my Mum to be given some dignity at her end of life, & not be a case number
It’s heartbreaking , I can’t look after her I’m disabled myself & my husband & daughter care for me. Having the same Council & care system fail my Dad it’s now doing the same with Mum. Social services say we are not allowing discharge so we sent documentation to the ward Mums on.
Mums not covid vaccinated as the GP tried to at home in January without notifying us - she freaked!
Honestly I’m exhausted by the fact that it seems & has been stated that the rule book no longer applies due to covid!
Cant believe that now she needs the 24/7 care package it’s being argued over despite all of the evidence.
Mum lives in Cornwall & hospital beds are being freed up for holidaymakers as no GP services & only one major hospital/ A&E unit in
Cornwall.
The usual community hospital beds available for rehabilitation & assessment are now put out to private care homes via D2A beds brought in by government to free up beds during Covid crisis.

Mum is in hospital gown & as we can’t visit & take away soiled clothing will remain so as no laundry facilities available to wash personal items.

seriously shocking situation considering the circumstances & Mums lack of capacity & ability to communicate.

anyone else experiencing this?

 

[Jaded'n'faded]

Hello @DesperateofDevon - it's good to hear from you, though obviously not in good circumstances.

Wow. That's a lot for you to deal with at a distance. I absolutely agree with you that your poor mum now needs 24/7 care not 4 carer visits at home - that's just a disaster waiting to happen.

Can I ask why you're so against the D2A bed? I don't know much about that but presumably she will be more fully assessed there, at which point you'd hope they'd realise the 4 carers thing is inadequate?

Also agree with you that the hospital situation/no visiting/lack of communication is appalling.

 

[nitram]

Social services say it’s in her best interests to remain at home

This is prejudging the outcome of the D2A (discharge to assess) placement.

 

[DesperateofDevon]

Hello @DesperateofDevon - it's good to hear from you, though obviously not in good circumstances.

Wow. That's a lot for you to deal with at a distance. I absolutely agree with you that your poor mum now needs 24/7 care not 4 carer visits at home - that's just a disaster waiting to happen.

Can I ask why you're so against the D2A bed? I don't know much about that but presumably she will be more fully assessed there, at which point you'd hope they'd realise the 4 carers thing is inadequate?

Also agree with you that the hospital situation/no visiting/lack of communication is appalling.

Hi I am against the D2A bed as it’s tendered out to a care home, eliminating dementia & complex care teams , freeing up hospital beds but not meeting care needs.
Mum needs palliative care as there is nothing medically that can be done for her. Pain relief is non existent as she can no longer swallow the tablets & repeated requests for pain assessments have been done due to covid without eyes on assessments; despite the fact of medical evidence of progressive osteoporosis & arthritis, x- rays over a decade ago showing degenerative issues with the spine & pain patch prescribed previously. The confusion experienced cannot be related to pain patch as that was stopped over 18 months ago. Mum cannot verbalise issues & speaks rarely now. An assessment bed in a care home for a person who is doubly incontinent , not weight baring, unable to feed themselves & rapidly losing a stone in 3 weeks seems inappropriate given the medical history.
what care home would take an unvaccinated patient ? Surely this is end of life care ? Mums now lost 5 stone in weight over a year… & the increased rapid weight loss is down to inability to eat & drink - it’s the bodies natural shutting down process.
A D2A bed would deny us access like the hospital are at the current time Cornwall has no visits due to covid regulations . Mum is in surgical gowns as the hospital don’t launder clothes. Plus a D2A bed has to become available & there is no choice - & we would not be able to be with Mum at this end of life stage as it’s a one hour slot once a week after a two week isolation period.
we are going into the third week now of not being able to visit Mum.

 

[DesperateofDevon]

This is prejudging the outcome of the D2A (discharge to assess) placement.

My question is why does the assessment not take place while Mum is in hospital , we are now going into the third week ?
D2A beds were brought in to allow hospitals to deal with high numbers of covid patients needing hospital beds. Local Health authorities have closed community dementia beds & not provided the new dementia facilities meant to open to replace these dementia beds; leaving D2A beds which are an re- enablement placement to care for dementia patients at end of life, away from their own GP , & complex care team thus isolating further .
mum doesn’t need re- enablement she needs end of life care

 

[DesperateofDevon]

Hi I am against the D2A bed as it’s tendered out to a care home, eliminating dementia & complex care teams , freeing up hospital beds but not meeting care needs.
Mum needs palliative care as there is nothing medically that can be done for her. Pain relief is non existent as she can no longer swallow the tablets & repeated requests for pain assessments have been done due to covid without eyes on assessments; despite the fact of medical evidence of progressive osteoporosis & arthritis, x- rays over a decade ago showing degenerative issues with the spine & pain patch prescribed previously. The confusion experienced cannot be related to pain patch as that was stopped over 18 months ago. Mum cannot verbalise issues & speaks rarely now. An assessment bed in a care home for a person who is doubly incontinent , not weight baring, unable to feed themselves & rapidly losing a stone in 3 weeks seems inappropriate given the medical history.
what care home would take an unvaccinated patient ? Surely this is end of life care ? Mums now lost 5 stone in weight over a year… & the increased rapid weight loss is down to inability to eat & drink - it’s the bodies natural shutting down process.
A D2A bed would deny us access like the hospital are at the current time Cornwall has no visits due to covid regulations . Mum is in surgical gowns as the hospital don’t launder clothes. Plus a D2A bed has to become available & there is no choice - & we would not be able to be with Mum at this end of life stage as it’s a one hour slot once a week after a two week isolation period.
we are going into the third week now of not being able to visit Mum.

It wouldn’t make any difference if I lived next door , the circumstances would be the same. No hospital visits allowed. No palliative care plan in place despite requests for the past 6 months. No assessments done in hospital by the Complex Care Team as we have been told there is nothing that can be done medically, therefore she is classified as “medically fit for discharge” Social services say the package of care in place is adequate, paramedics , carers , volunteer services & family have provided evidence otherwise.
This is about funding not care needs.

 

[DesperateofDevon]

I’m going to have a rant … when did dementia stop being a terminal disease?
When did a patients welfare become less important than costs?
When did dying without dignity & compassion become acceptable?
why can’t all terminal illnesses be treated equally?
I hate dementia with a vengeance , it steals away so much, not only from the person diagnosed but from those that care & love for them. The treatment of those diagnosed with dementia has become normalised & marginalised with rural communities being hardest hit.
The postcode lottery & poor practices experienced by soo many taint the last days of living, leaving families struggling with guilt at not being able to meet the care needs of loved ones 24/7. Professionals already under strain from the pandemic are unable to provide end of life care due to constraints & demands of a failing system. Underfunded & privatised , the NHS finds itself placing patients in D2A beds knowing that 6 weeks of assessments paid to a private care home will not resolve the last & final stages of dementia, end of life, the body shutting down, dying. Infact it adds to the issues of access for the family , compounding their grief & adding to the guilt of not being able to care for their loved one. Leaving the family angry, confused & bereft.
My dog died with dignity & surrounded by love… where is the dignity , compassion in the D2A bed system ? End of life care shouldn’t be tendered out , it feels morally wrong. The only positive point is knowing that Mum is safe . Cognitively Mums been unaware of any personal safety for 18 months & the struggle to get this acknowledged is now over. Now Mums bed bound , not eating , drinking getting end of life care is now the issue.
wow … what sort of society do we live in today?

 

[TNJJ]

I’m going to have a rant … when did dementia stop being a terminal disease?
When did a patients welfare become less important than costs?
When did dying without dignity & compassion become acceptable?
why can’t all terminal illnesses be treated equally?
I hate dementia with a vengeance , it steals away so much, not only from the person diagnosed but from those that care & love for them. The treatment of those diagnosed with dementia has become normalised & marginalised with rural communities being hardest hit.
The postcode lottery & poor practices experienced by soo many taint the last days of living, leaving families struggling with guilt at not being able to meet the care needs of loved ones 24/7. Professionals already under strain from the pandemic are unable to provide end of life care due to constraints & demands of a failing system. Underfunded & privatised , the NHS finds itself placing patients in D2A beds knowing that 6 weeks of assessments paid to a private care home will not resolve the last & final stages of dementia, end of life, the body shutting down, dying. Infact it adds to the issues of access for the family , compounding their grief & adding to the guilt of not being able to care for their loved one. Leaving the family angry, confused & bereft.
My dog died with dignity & surrounded by love… where is the dignity , compassion in the D2A bed system ? End of life care shouldn’t be tendered out , it feels morally wrong. The only positive point is knowing that Mum is safe . Cognitively Mums been unaware of any personal safety for 18 months & the struggle to get this acknowledged is now over. Now Mums bed bound , not eating , drinking getting end of life care is now the issue.
wow … what sort of society do we live in today?

I’m sorry to hear this. I had to get the doctor out last week as I think dad is coming to the end. I asked if he should be on palliative care as hardly any urine output and not eating much. But was told no. Doctor phoning tomorrow so it should be interesting.
It is very hard to get anything done at all these tbh!

 

[DesperateofDevon]

I’m sorry to hear this. I had to get the doctor out last week as I think dad is coming to the end. I asked if he should be on palliative care as hardly any urine output and not eating much. But was told no. Doctor phoning tomorrow so it should be interesting.
It is very hard to get anything done at all these tbh!

Absolutely impossible ! Mums been taken into hospital but no assessments done?
We can’t seem to get straight answers from what we can expect as a future care package / options !
Shockingly the weight loss isn’t raising red flag for end of life, nor is the not eating /drinking!
???