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End of life palliative care

DesperateofDevon

Registered User
Jul 7, 2019
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Today is a mixed blessing, the phone call about quality of life vs quantity . Unnecessary meds stopped & End of Life now stated medically .
palliative care being put in place
More decisions to be made about where to care for Mum. That’s going to need sorting out tomorrow
Emotionally, mentally & physically exhausted plus numbness
This dementia journey is nearing its natural conclusion
 

TNJJ

Registered User
May 7, 2019
2,221
0
cornwall
Today is a mixed blessing, the phone call about quality of life vs quantity . Unnecessary meds stopped & End of Life now stated medically .
palliative care being put in place
More decisions to be made about where to care for Mum. That’s going to need sorting out tomorrow
Emotionally, mentally & physically exhausted plus numbness
This dementia journey is nearing its natural conclusion
Bless you! At least it’s a result and you know where you are going. (( hugs))
 

Moggymad

Registered User
May 12, 2017
613
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Hello @DesperateofDevon I have been wondering how things were going with your mum. I'm so sorry you've had to continue your battle all this time. I can well imagine how exhausted you are. I hope the remaining time for your mum will be peaceful & that you are allowed to visit her wherever she is. It will be hard as you know but hopefully not many hurdles left for you now. You have been a wonderful advocate for your mum (& dad). Remember to be gentle with yourself x
 

DesperateofDevon

Registered User
Jul 7, 2019
3,240
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Hello @DesperateofDevon I have been wondering how things were going with your mum. I'm so sorry you've had to continue your battle all this time. I can well imagine how exhausted you are. I hope the remaining time for your mum will be peaceful & that you are allowed to visit her wherever she is. It will be hard as you know but hopefully not many hurdles left for you now. You have been a wonderful advocate for your mum (& dad). Remember to be gentle with yourself x
Thank you for your lovely words xx
It means a lot, especially as this dementia journey has brought us all together. Be kind to yourself is a message I’m taking seriously , the fragility I experienced with Dad is just a veneer away bubbling beneath. Mum has a cat , Lily , who is on her holibobs atm with a lovely (now a friend) cattery, bringing Lily to live with us will be one of the last things I can do as a daughter. Lily was truly Dads cat & adored him. We have an old dog & have previously had cats when the children were young, our daughter is living with us atm & as the dog is devoted to me will be providing cuddles as will my husband. I will have to sneak in cuddles when the dogs not looking.
xx
 

DesperateofDevon

Registered User
Jul 7, 2019
3,240
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I'm sorry @DesperateofDevon

There's no easy way to get through this part. Sending you some virtual strength and hoping things go as well as can be.
Thank you , I started my Dementia journey on here with Dad , & it finishes with Mum . I hope that one day the system will change & for our experiences to be part of that legacy.
-by not listening to those who believed they knew Mum (&Dad) better than we did we have finally been able to get Mum the care she so desperately needed. It really is a postcode lottery, & covid has complicated the system even more with implementation of D2A beds. I hope that one day this system changes as the heartbreak caused by dementia tears at the soul.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,240
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Hello @DesperateofDevon I have been wondering how things were going with your mum. I'm so sorry you've had to continue your battle all this time. I can well imagine how exhausted you are. I hope the remaining time for your mum will be peaceful & that you are allowed to visit her wherever she is. It will be hard as you know but hopefully not many hurdles left for you now. You have been a wonderful advocate for your mum (& dad). Remember to be gentle with yourself x
Battle , yes it’s been an unrelenting battle & that’s what has caused myself & soo soo many the added stress & heartache.
Finally after months of being told that the care in place by social services was adequate Mum has the care she needs. All those conversations with paramedics , Doctors, nurses & carers who disagreed along with us that this awful situation couldn’t continue…
Now I am dealing with the fallout from Mums friends , distant family & neighbours who have no idea of the difficulty in accessing care for those diagnosed with Dementia. Harsh words have been said & im sad that I have to defend the decisions made in Mums best interests. Until you have lived through the nightmare of the system you have no idea.
- it’s easy to judge a situation from the outside
Yesterday I tried to contact Mums vicar, he’s retired & moved away & a lovely church warden who has known Mum most of her life stepped in to arrange a pastoral care visit.
- the kindness of her words brought home to me how easy it is for others to judge at a time when empathy is required.
Mums life used to revolve around the church & her faith was strong. On my last visit to Mum I quietly laid beside her & read to her from her bible, I randomly opened & read “the fisher of men”
I shall be doing this as often as I can & treasuring the time together. For Dad it was classical music.
My heart aches today & I need to take a little time out for me to grieve, then I can be the daughter that I need to be to bring comfort to Mum.
Bringing us both closure as we travel this dementia journey together.

Xxx
 

DesperateofDevon

Registered User
Jul 7, 2019
3,240
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Well folks you seriously couldn’t write the **** that’s going on with my mum !!
Now I’m being told that Mum is palliative care by some ward staff not end of life !
Found a nursing home for mum & gave Ward the details
Ward said mum would be a risk to other patients to the nursing home !
Mums on an air mattress with cot sides, doubly incontinent , two handed care, not weight baring, needs assistance feeding, all unnecessary meds stopped, blue book meant to be in place, palliative care along with morphine etc meant to be in place !!
So I’m rung up by consultant & Ward Dr to say Mums at end of life , that her food / drink intake isn’t sustainable & palliative care etc put in place …… & now I’m fighting to get access to mums Ward notes - we have LPA health & welfare & the ward / hospital / CCG / PCT all have copies of this!

oh it get better …
Nursing home had place - hospital staff gave outdated information
Hospital staff then emailed their response to my email questions clearly stating that the placement nursing home didn’t do nursing care!

seriously you couldn’t write this !!!

have asked pals why as LPA we can’t have access to ward notes ?
No reply !

now I’m told that an appointment to visit mum once a week must be made…. She’s in a side room off the ward as she’s “end of life”
Fast track CHC … still no answers ?

how is this allowed ?
To add insult the prospective placement said they would be informing the ward that the family “are very involved “

seriously … I am about to contact the office of public guardian & report this **** show !!!
how can a hospital just cut LPA out of the whole process - time & time again !
So upset
So very angry
Soo devestated!
 

TNJJ

Registered User
May 7, 2019
2,221
0
cornwall
Well folks you seriously couldn’t write the **** that’s going on with my mum !!
Now I’m being told that Mum is palliative care by some ward staff not end of life !
Found a nursing home for mum & gave Ward the details
Ward said mum would be a risk to other patients to the nursing home !
Mums on an air mattress with cot sides, doubly incontinent , two handed care, not weight baring, needs assistance feeding, all unnecessary meds stopped, blue book meant to be in place, palliative care along with morphine etc meant to be in place !!
So I’m rung up by consultant & Ward Dr to say Mums at end of life , that her food / drink intake isn’t sustainable & palliative care etc put in place …… & now I’m fighting to get access to mums Ward notes - we have LPA health & welfare & the ward / hospital / CCG / PCT all have copies of this!

oh it get better …
Nursing home had place - hospital staff gave outdated information
Hospital staff then emailed their response to my email questions clearly stating that the placement nursing home didn’t do nursing care!

seriously you couldn’t write this !!!

have asked pals why as LPA we can’t have access to ward notes ?
No reply !

now I’m told that an appointment to visit mum once a week must be made…. She’s in a side room off the ward as she’s “end of life”
Fast track CHC … still no answers ?

how is this allowed ?
To add insult the prospective placement said they would be informing the ward that the family “are very involved “

seriously … I am about to contact the office of public guardian & report this **** show !!!
how can a hospital just cut LPA out of the whole process - time & time again !
So upset
So very angry
Soo devestated!
It’s bloody awful.! As your mum and my dad are in the same county it says it all! Communication between all of the professionals seem to be none exsistant! My thoughts are with you. ((Hugs)) …
 

DesperateofDevon

Registered User
Jul 7, 2019
3,240
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It’s bloody awful.! As your mum and my dad are in the same county it says it all! Communication between all of the professionals seem to be none exsistant! My thoughts are with you. ((Hugs)) …
Thanks lovely ….
im honestly flabbergasted that this is happening! Family are left astounded that we are still battling to access care …
 

DesperateofDevon

Registered User
Jul 7, 2019
3,240
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Can I vent please … Aaaaaaaaaaaargh!
So after speaking to consultants secretary, it seems that yes
Mum is at end of life
But we can’t get an appointment to visit Mum !
Plus no one wants to answer our questions or speak to us !
Ward not helpful !
 

DesperateofDevon

Registered User
Jul 7, 2019
3,240
0
I didn’t think that I would be writing this ever
Rung up by nurse on yesterday / Friday saying D2A bed available …
Then told by nurse Mums not end of life ….
… wouldn’t qualify for CHC
Nurse stated Mum got herself out of bed today , got dressed & was walking around the ward & to the toilet .
Asked what she got dressed into ? - - clothes
That’s odd as she’s using hospital gowns 🤦‍♀️
How did she climb over the cot sides? - oh she didn’t we got her out into the chair
Did you give pain meds before moving due to degenerative osteoporosis & arthritis ?
Walking about the ward on her own as she’s non weight baring?
me thinks that you have got my mum mixed up with someone else..

Because hold on folks …..
Thursday rung up by Consultant looking after Mum
Ringing to confirm End of life , palliative care only , morphine & driver should be in place , pain patch to be reinstated , non weight baring , fast track CHC will be done , life not sustainable , documented less than 3 months on admittance to hospital
( please note that was 6 weeks ago)
doubly incontinent, on air mattress & cot sides up, non weight baring , can move arms & legs, needs assistance feeding, non commutative, double handed care ….

Back to Friday …
Me: Asked if the nurse was aware of this .
-No …
Me: Well can you put what you are saying in writing please ?
-We don’t do that …The ward Dr came in this morning & said ..
Me: Excuse me , but who was that ?
-Dr on the ward
Me: His name ?
-We don’t discuss patients details
Me: What? I’m LPA health & welfare you have a copy as we gave it to you on the Ward! You know what I’m fed up with you ignoring consultant diagnosis, please get the ward Dr to contact me ASAP
- we don’t do that

So folks we have tried communicating with the ward / hospital , contacted PALS on 4 occasions.
Been told by 3 consultants & a senior Dr that Mum is at end of life etc , yet the ward manager & some nursing staff say she isn’t ???
Asking for access to ward notes & being denied
Told by Ward manager & nurse that Fast Track CHC refused - hang in there folks we are going into the twilight zone ….. I rang the CHC office & the hospital haven’t filed a CHC request for Mum - so how can it have been denied ?
Yes I have asked this & still haven’t got a reply !!


PALS having been sent an email stating the issues send a reply asking for us to send an email stating the issues ????
I rang them & am waiting to hear back

Meanwhile we can’t book an appointment to visit Mum as the ward manager is on holiday & apparently no one else knows how to do this ?
strange as we have been told as Mum is End of life & in a side room we can visit at anytime 1 on 1 !!!

Rang head of departments medical secretary & asked for someone to contact me , poor medical secretary rang back & said “ you have to ring the ward & sort it out “

seriously ….
CQC are now investigating , just spent the whole day collating all communications to email across the issues

it’s made me realise that the family are & always have been the driving force behind accessing Mums care.
Fortunately last week I managed to get the ward manager to email me in reply ( well it was waffle not answering or saying anything ) & in amongst the waffle were just a few of the contradictions between Ward & consultants !
Yes !!!!
Got ya !

finally in black & white we have enough to go to CQC & ask for help.

Am I hopeful … honestly no. But it will highlight the issues & might help someone .
updates to follow
 

DesperateofDevon

Registered User
Jul 7, 2019
3,240
0
You could try a concise factual email to either the relevant hospital trust or CCG
@DesperateofDevon
We have sent every week a concise factual email to the hospital , & 3 requesting help to PALs
PALS got us the End of Life diagnosis now we are on the fourth time of being told by nurse that Mums not end of life!
Denied access to notes as LPA health & welfare
So now having to go through freedom of information act process - mum will be dead before we get it.
Rang office of public guardian to enquire about our legal rights to access ward notes, food diary, medication changes etc - we have the same rights as the patient / donor.
Sadly hospital think otherwise.
We have rung to try & talk to the ward - no one available & no ring backs
We have emailed the ward with questions cc to the Admiral nurse
The Admiral nurse can’t get anywhere either !

Rang CHC office & hospital / Ward haven’t filed a CHC for Mum . Only one on record was done weeks before Mum went into hospital & Mum was borderline then & we were advised to appeal at the assessment by the assessor.

Mum needs 24/7 nursing care as she’s at end of life & death could be at any point soon as stated by 3 consultants & yes we have asked to have written confirmation of the consultants notes . On Thursday we were told over the phone ( no face to face ) that life isn’t sustainable & Mums very frail .
The head of Elder Care won’t take our calls , never has . Mums consultant hasn’t revised his opinion since she was admitted - life expectancy of no more than 3 months on admittance to hospital .
Palliative care team haven’t seen mum, & the pain patch nurses decided made Mum sleepy !? As Mums non responsive I’m not sure how they know … but they won’t tell me that either.
The placement I found for mum were told on Friday by the same nurse Mum was able to wash / dress/ feed herself & was mobile …..
The placement having been sent a copy of Mums care plan when she was at home & the contradictory email the ward sent cannot believe the disparity … infact both placement & PALs are wondering if they even know who mum is?
CQC investigation - not what we want but if that’s what it takes ..
The Dr who rang us on Thursday was shocked at the lack of humanity shown by Ward staff , the bullying techniques & lack of duty of care.
It’s been a catalogue of disasters from the beginning
Mum moved wards & then hospital without us knowing
O/T assessment not done as Mum unresponsive / not waking up but O/T & social services said she was medically fit for discharge back home to package of care of 4 visits a day .
No 24 Hr assessment done
No assessment by Complex Care & Dementia Team
Social services said we the family were stopping Mum being discharged. Yes because Mums needs are greater than the package of care in place.
C/T scan never done as Mum too aggressive & distressed - the reason why ambulance crew insisted on taking Mum in was because of head injury .
MDT & social services had meeting without us knowing & decided package of care was sufficient . We have never been given the minutes of this meeting or any information as to how they arrived at this decision . Yes we have emailed & rung to ask to be updated.
Ward gave meds against Mums wishes & directive - Respect & DNR with Mum in hospital & on ward.
The Ward have told us that the placement don’t do nursing care in an email to us - mean while they told the placement that Mum was stacking patients even though she’s bed bound & not weight baring.
The Ward on receiving our LPA discussed over the phone another patient believing it to be my mother 3 times I stated my mums name & queried what I was being told.
D2A beds are for residential care re-enablement before you go back home they do not provide nursing care. D2A beds are not for palliative care or end of life.
The Ward in an email stated Mum needs palliative nursing care & residential care cannot meet her needs.
So we the family do not understand -
- why the consultants diagnosis is under dispute from a ward manager & nurse.
- why say CH C fast track refused when it’s never been submitted.
- why we can’t make an appointment to visit because the ward managers on holiday
- why a D2A bed in a care home is being offered when the ward in an email state Palliative nursing care is needed.
- why is any of this happening & who will sort it out ?
 

DesperateofDevon

Registered User
Jul 7, 2019
3,240
0
@DesperateofDevon, I'm so sorry this is such a tough process. Stay strong and keep working towards getting the best outcome for your mother.
Consultant on Thursday stated over the phone that Mum was soo frail that death could be at any time but within a weeks not months time frame
On admittance to hospital life was documented as not being sustainable, & 3 months time frame
Hence End of Life diagnosis , Mums been in hospital 6 weeks & the consultant says she’s now very frail & has lost more weight since he last saw her.
We fear that Mum will die in the hospital & we are unable to book a visit & won’t be admitted onto the ward .
 

TNJJ

Registered User
May 7, 2019
2,221
0
cornwall
Consultant on Thursday stated over the phone that Mum was soo frail that death could be at any time but within a weeks not months time frame
On admittance to hospital life was documented as not being sustainable, & 3 months time frame
Hence End of Life diagnosis , Mums been in hospital 6 weeks & the consultant says she’s now very frail & has lost more weight since he last saw her.
We fear that Mum will die in the hospital & we are unable to book a visit & won’t be admitted onto the ward .
I’m so sorry to hear this. I wonder too if they have the correct person. Sometimes professionals are so arrogant that I often wonder how they do the job..(( hugs))
 

DesperateofDevon

Registered User
Jul 7, 2019
3,240
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@DesperateofDevon, I'm so sorry this is such a tough process. Stay strong and keep working towards getting the best outcome for your mother.
Can I contact the CCG ? I contacted the office that handled Mums CHC assessment we insisted that was done - that was before she went into hospital . Mum weighed 8 stone 07/06/ & was 7 stone 3 on the 28/06 hospital weighed her. Now hospital can’t weigh her as she’s non weight baring .
The dramatic weight loss from 12 stone should raise red flags but hasn’t .
Mum has difficulty swallowing & needs assistance to take a sip & can only manage soft food .
The hospital know all of this & also know that she’s not vaccinated either …. Unknown to us carer turned up & found mum screaming & a dr & nurse trying to vaccinate !
no one told us .