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End of Life Advice

Sheelagh7

Registered User
Feb 25, 2022
60
0
Hi everyone

I've just joined the forum and have been reading some of the threads over the last few days.
The thread last year by DesperateOfDevon really spoke to me, I could so relate to the frustration and ridiculous situation with hospital, local authority, care home, all trying to side step responsibility and getting denied funding etc.

My mother (95) has advanced Alzheimer's and had been living safely at home with the aid of daily carers, who were doing a wonderful job. I was buying her food, collecting prescriptions, and spending lots of time with her. She had a couple of trips to hospital at the beginning of 2021 but was discharged back home within a few days. I installed cameras in several rooms so I could monitor mum when she was home alone, this proved to be invaluable. She was starting to get unsteady on her feet, even with a walking frame, and we had to pick her up off the floor a few times but luckily she didn't injure herself at all. She was eating and drinking normally but sleeping about 23 hrs a day. In May 2021 she was unresponsive in bed when I/carer arrived and was rushed to hospital on blue lights. The hospital stated she was very ill and unlikely to last the night. They gave her IV antibiotics after checking with me and we were advised to visit to say goodbye. The following morning when I called to find out why we hadn't received a call to say she'd gone, I was advised by a nurse on the ward that she was sitting up in bed and had eaten breakfast! My brother and I had been planning the funeral the previous evening on the journey home from the hospital! We were advised mum was end of life and wouldn't see the new year. The hospital also advised she could only be discharged to a nursing home. The following month mum was duly discharged to a local nursing home organised by the local authority on a 6 week discharge to assess basis. Fast forward 4 months and mum finally had her assessment. She was turned down for full funding, but approved for funded nursing care. This only covers a fraction of the nursing home fees so we had to apply to the local authority for a loan to pay for the fees while we were waiting for mum's bungalow to be sold. While we were waiting for this decision to be made by the local authority I pursued the "end of life" diagnosis we'd been given by two hospital doctors and her new GP. A fast track application was submitted (which took 5 weeks to be sent to the CHC) and on Christmas Eve I was advised that mum didn't qualify for funding as her health wasn't in rapid decline. I must confess I was a blubbering mess on the phone receiving this information as by this stage I was being chased for £1,000s in fees that mum couldn't pay. I was advised that mum was considered palliative stable and not end of life. Since August mum has been bed bound, unable to eat solids, she has gangrene in her feet, her skin is very fragile, she is doubly incontinent, she doesn't know where she is, she doesn't know who we are, and she has lost her speech apart from the occasional yes or no. Basically she has zero quality of life. She is on morphine patches for pain control and the GP has prescribed a morphine pump but as yet that hasn't been implemented.

Fast forward to March and mum is somehow still clinging on to life. After nearly 4 months we've finally heard back from the local authority that they don't consider mum their responsibility any more as the nursing home (that they placed her in) is outside their boundary (only by a few yards apparently) and they want me to apply to the county authority to start the loan application off from scratch. I have been advised that this will fail and I will be referred back to the city local authority as mum has lived within their boundary for 95 years. Aarrgghh!!

If I may, I have a few queries:
- am I going completely mad or are the city and county authorities trying to shirk their responsibility?
- how can mum be end of life in April/May but now only palliative stable 8 months later, she has declined, not miraculously improved?
- what can we do to help mum have a quick peaceful end?
- when will this hell end, I'm not sure how much longer I can cope?

Sorry this message is so long, I wanted to introduce myself and explain the situation I am facing, but I do realise this has turned into war & peace. Any comments, suggestions, etc., would be much appreciated!
Many thanks for reading my saga :)
Sheelagh
 

canary

Registered User
Feb 25, 2014
18,483
0
South coast
Hi @Sheelagh7 and welcome to Talking Point.
Im sorry you have been on this terrible roller coaster. Im afraid that people with dementia can, and frequently do, rally from being at End of Life (actively dying) - they seem to cling to life much longer than you imagine. I was told three times that mum was at End of Life, only for her bounce back - although she never quite regained the same level at before. It was about 16 months after the fist time I was told she was at EoL that she finally did pass away. The same thing happened to OH. He was taken to A&E, unresponsive, and I was told that he had urosepsis and would probably not survive, although he was pumped full of IV antibiotics. The next day I went with his brother to visit him and found him sat up in bed reading!!! Two years later, he is still at home. Many other people on here have similar stories.

Im afraid that there is no way of knowing how long your mother will survive, although from the sound of it, I doubt that it will be years (though its possible that I am wrong). When the end finally came for mum her care home knew exactly what to do and she was given pain killers and other drugs to keep her pain-free and comfortable so that her passing was indeed peaceful. There is no way to speed it up, though, and unfortunately when someone dies from dementia it is not quick because their body shuts down slowly over the days.

This final stage, before they finally reach EoL, and they have little quality of life is heart wrenching. At this stage you may want to talk to the GP in charge of the nursing home and discuss what further treatment would be appropriate for your mum. I talked to mums homes GP and it was decided that she would not go to hospital unless she was in pain and/or broken bones were suspected. If she had an infection then they would give her oral antibiotics, but not take her to hospital for IV antibiotics. They would not take her to hospital for a TIA, or a stroke. I signed a Do Not Resuscitate form.

(((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))
 

15moterbike

Registered User
Jan 17, 2022
131
0
If she has gangrene in her feet I can only imagine she must be in so much pain even with the patch . Does she seem in pain . It’s all very cruel and different from the palliative care and So much support palliative cancer patients receive . The home won’t throw your mum out whilst you wait for the house to be sold so phraps you can question the need for the loan atm . I hope like my mum your mum finds peace very soon . Where this is no quality of life it’s just the hardest I would say pointless situation xx
 

Banjomansmate

Registered User
Jan 13, 2019
4,083
0
Dorset
Unfortunately the iv antibiotics seem to work wonders. The Banjoman was deemed unlikely to last the night with sepsis so family were called in and by the next day he was sitting up in bed and eating lemon mousse!
This meant he was eventually discharged home from hospital then went through another 15 months of deteriorating dementia, including another unknown infection, a further two months in hospital while it was decided where he should go next, a broken femur and subsequent loss of mobility after a fall in his Care Home . This led to a fairly rapid deterioration and quite honestly we all breathed a sigh of relief that his ordeal was over.
His s-i-l and I both felt it would have been better for him if he hadn’t received the iv antibiotics the first time he was admitted to hospital.
 

15moterbike

Registered User
Jan 17, 2022
131
0
Mum won't be given oral antibiotics now . A chest infection 3 weeks ago the dr was called as we had discussed this with her Dr previously not to give but I felt guilty and asked the oncall Dr to review who called me and said it wasn't in her best interests. She has improved but coughing still as swallow gets worse and even more frail hence I expect this will happen again very soon. Really feel for you sheeleigh
 

Sheelagh7

Registered User
Feb 25, 2022
60
0
Hi @Sheelagh7 and welcome to Talking Point.
Im sorry you have been on this terrible roller coaster. Im afraid that people with dementia can, and frequently do, rally from being at End of Life (actively dying) - they seem to cling to life much longer than you imagine. I was told three times that mum was at End of Life, only for her bounce back - although she never quite regained the same level at before. It was about 16 months after the fist time I was told she was at EoL that she finally did pass away. The same thing happened to OH. He was taken to A&E, unresponsive, and I was told that he had urosepsis and would probably not survive, although he was pumped full of IV antibiotics. The next day I went with his brother to visit him and found him sat up in bed reading!!! Two years later, he is still at home. Many other people on here have similar stories.

Im afraid that there is no way of knowing how long your mother will survive, although from the sound of it, I doubt that it will be years (though its possible that I am wrong). When the end finally came for mum her care home knew exactly what to do and she was given pain killers and other drugs to keep her pain-free and comfortable so that her passing was indeed peaceful. There is no way to speed it up, though, and unfortunately when someone dies from dementia it is not quick because their body shuts down slowly over the days.

This final stage, before they finally reach EoL, and they have little quality of life is heart wrenching. At this stage you may want to talk to the GP in charge of the nursing home and discuss what further treatment would be appropriate for your mum. I talked to mums homes GP and it was decided that she would not go to hospital unless she was in pain and/or broken bones were suspected. If she had an infection then they would give her oral antibiotics, but not take her to hospital for IV antibiotics. They would not take her to hospital for a TIA, or a stroke. I signed a Do Not Resuscitate form.

(((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))
Thank you so much for your kind words @canary. 16 months, wow that's a long time to cope with.
Mum isn't bouncing back, she was in steady decline and from my prospective she's been at rock bottom for several months, I can't see how she can decline further without actually dying.
Mum has a DNR (her GP at the time signed it without seeing mum at the beginning of lockdown!). I have agreed with her new GP no hospital unless she breaks a bone, and no antibiotics either, but they keep prescribing them to keep the gangrene from turning to sepsis I assume, which just seems to be unnecessarily prolonging things.
 

Sheelagh7

Registered User
Feb 25, 2022
60
0
If she has gangrene in her feet I can only imagine she must be in so much pain even with the patch . Does she seem in pain . It’s all very cruel and different from the palliative care and So much support palliative cancer patients receive . The home won’t throw your mum out whilst you wait for the house to be sold so phraps you can question the need for the loan atm . I hope like my mum your mum finds peace very soon . Where this is no quality of life it’s just the hardest I would say pointless situation xx
Many thanks for your response @15moterbike. Yes, mum must be in pain with the gangrene. Her feet are elevated off the bed to help protect them but mum winces and moans whenever she is sat up in bed or repositioned. I suggested it was time for the morphine pump 4 months ago (it's been in place since July), but the GP said it wasn't time as the morphine patches were sufficient and mum said she wasn't in pain when asked. However, my argument is that you can't trust what mum says as she randomly says yes and no, if anything, when asked simple questions. Looking at her face crumple in pain when being moved gives me the answer. I think I need to have another difficult discussion with the GP to find out if they think it is time yet ...
 

Sheelagh7

Registered User
Feb 25, 2022
60
0
Unfortunately the iv antibiotics seem to work wonders. The Banjoman was deemed unlikely to last the night with sepsis so family were called in and by the next day he was sitting up in bed and eating lemon mousse!
This meant he was eventually discharged home from hospital then went through another 15 months of deteriorating dementia, including another unknown infection, a further two months in hospital while it was decided where he should go next, a broken femur and subsequent loss of mobility after a fall in his Care Home . This led to a fairly rapid deterioration and quite honestly we all breathed a sigh of relief that his ordeal was over.
His s-i-l and I both felt it would have been better for him if he hadn’t received the iv antibiotics the first time he was admitted to hospital.
Thanks @Banjomansmate, I have found out the hard way about iv antibiotics. The number of times I have blamed myself for mum being in this position due to me saying yes to them when she was rushed to hospital. If I had said no she would have passed away peacefully in hospital without going through all these months of torment.
 

Sheelagh7

Registered User
Feb 25, 2022
60
0
Mum won't be given oral antibiotics now . A chest infection 3 weeks ago the dr was called as we had discussed this with her Dr previously not to give but I felt guilty and asked the oncall Dr to review who called me and said it wasn't in her best interests. She has improved but coughing still as swallow gets worse and even more frail hence I expect this will happen again very soon. Really feel for you sheeleigh
Thanks for that update @15moterbike, it sounds like we are at a similar timeline with our mums, I sympathise. Mum lost 1.8kg last month after being stable for a couple of months so her BMI is now under 16, there is nothing of her. I hope mum's GP will agree to stopping oral antibiotics too.
 

CAL Y

Registered User
Jul 17, 2021
305
0
@Sheelagh7 . It’s so cruel of doctors to keep on with treatment for a person of your mums age and condition especially as she has a DNR.
What do they think that they are saving people for.
A similar thing happened with my mother who, before a DNR was decided upon was resuscitated at the age of 84 to live another 2 years with the horrors of dementia.

More recently, I have to admit that I felt relieved when my poor husband was diagnosed with terminal cancer and only lived for six weeks after.
Even though it was only four months ago I’m glad that he and myself didn’t have to cope with dementia any longer.
 

Sheelagh7

Registered User
Feb 25, 2022
60
0
@Sheelagh7 . It’s so cruel of doctors to keep on with treatment for a person of your mums age and condition especially as she has a DNR.
What do they think that they are saving people for.
A similar thing happened with my mother who, before a DNR was decided upon was resuscitated at the age of 84 to live another 2 years with the horrors of dementia.

More recently, I have to admit that I felt relieved when my poor husband was diagnosed with terminal cancer and only lived for six weeks after.
Even though it was only four months ago I’m glad that he and myself didn’t have to cope with dementia any longer.
Thanks @CAL Y , that's exactly what my brother and I think, cruel to keep her going considering her age, condition, etc. If she was an animal it would be considered cruelty, I don't understand the prolonging life at any cost situation. You do feel guilty for thinking that though. If mum was much younger, didn't have dementia, and there was a chance she could recover we'd be fighting for treatment to keep her going. We were incredibly lucky that mum was fit & healthy until she was diagnosed with Alzheimer's aged 92. She was still gardening 2 years ago but then the steep decline started. I need to pluck up the courage to phone the GP again and see if we can get things reviewed.
Sorry for your loss of both your mother and husband with dementia.
 

15moterbike

Registered User
Jan 17, 2022
131
0
Thanks for that update @15moterbike, it sounds like we are at a similar timeline with our mums, I sympathise. Mum lost 1.8kg last month after being stable for a couple of months so her BMI is now under 16, there is nothing of her. I hope mum's GP will agree to stopping oral antibiotics too.
Same with bmi under 16 . So cruel
 

15moterbike

Registered User
Jan 17, 2022
131
0
Many thanks for your response @15moterbike. Yes, mum must be in pain with the gangrene. Her feet are elevated off the bed to help protect them but mum winces and moans whenever she is sat up in bed or repositioned. I suggested it was time for the morphine pump 4 months ago (it's been in place since July), but the GP said it wasn't time as the morphine patches were sufficient and mum said she wasn't in pain when asked. However, my argument is that you can't trust what mum says as she randomly says yes and no, if anything, when asked simple questions. Looking at her face crumple in pain when being moved gives me the answer. I think I need to have another difficult discussion with the GP to find out if they think it is time yet ...
Yes do they should be looking at facial expressions , talk to the dr again x
 

Sheelagh7

Registered User
Feb 25, 2022
60
0
Hi Everyone
After unsuccessfully getting to speak to mum's GP on the phone I managed to see him at the nursing home this morning. He had two medical students with him which wasn't ideal when I got emotional part way through the difficult conversation. He explained how doctors are notoriously bad at predicting how long a patient has to live at the end of their life so wasn't surprised mum had exceeded expectations. The good news (weird to be saying this) is that he agrees that continuing to treat infections with antibiotics is not in mum's best interests so he has modified her care plan so that the staff no longer swab wounds for infection and only treat her with pain control. He has also increased the strength of the morphine patches to 10 micrograms/hr, I think she's been on 5 micrograms/hr for the last 8 months. Ironically when my brother and I visited mum yesterday afternoon she was actually awake some of the time we were there. We tried to talk to her but she didn't seem to comprehend even simple questions spoken very slowly, she just looks at your blankly and shakes her head as if you are speaking to her in a foreign language. Hopefully when the GP sees her today on his rounds she isn't sitting up in bed looking alert!!!
 

canary

Registered User
Feb 25, 2014
18,483
0
South coast
(((((((((((((((((((((((((((hugs)))))))))))))))))))))) @Sheelagh7
Im not surprised you got emotional, although Im glad that you managed to talk to the GP and your mums care plan is now amended.
It is heart wrenching when they get to this stage.
 

Sheelagh7

Registered User
Feb 25, 2022
60
0
(((((((((((((((((((((((((((hugs)))))))))))))))))))))) @Sheelagh7
Im not surprised you got emotional, although Im glad that you managed to talk to the GP and your mums care plan is now amended.
It is heart wrenching when they get to this stage.
Thanks @canary, it is awful isn't it. However, since seeing the GP and discussing mum on Tuesday I seem to be sleeping a bit better. I feel more at ease with mum's situation and think the GP is on the same page as us regarding her treatment, he was obviously very guarded with what he said in front of the students.
Next week I shall be tackling adult social services again, so no doubt my stress levels will increase again with the madness of the system!
 

silkiest

Registered User
Feb 9, 2017
636
0
It worries me that todays Dr's seem to be afraid of death. They often seem to do everything they can to keep people alive instead of initiating conversations that are difficult with family and ill people. I vividly remember 2 patients from the 1970's and 80's who were in severe pain and terminal. The doctor discussed this with the family and made them aware that to increase the morphine enough to fully control the pain it would likely speed up their death. The families were relieved both for the total pain relief and the fact that their loved ones passed away peacefully. I wish doctors would have more honest and realistic conversations like this in the whole of the NHS rather than just in hospices.
 

Sheelagh7

Registered User
Feb 25, 2022
60
0
It worries me that todays Dr's seem to be afraid of death. They often seem to do everything they can to keep people alive instead of initiating conversations that are difficult with family and ill people. I vividly remember 2 patients from the 1970's and 80's who were in severe pain and terminal. The doctor discussed this with the family and made them aware that to increase the morphine enough to fully control the pain it would likely speed up their death. The families were relieved both for the total pain relief and the fact that their loved ones passed away peacefully. I wish doctors would have more honest and realistic conversations like this in the whole of the NHS rather than just in hospices.
Many thanks @silkiest , I totally agree. Doctors seem to be very guarded when discussing end of life treatment when all the relatives want is for their loved one to be put out of their misery, especially in dementia situations. It's not as if there is a possibility they will recover! There is a morphine pump at the nursing home with mum's name on it, it's been sitting there for 8 months! Why prolong their suffering?
 

silkiest

Registered User
Feb 9, 2017
636
0
Many thanks @silkiest , I totally agree. Doctors seem to be very guarded when discussing end of life treatment when all the relatives want is for their loved one to be put out of their misery, especially in dementia situations. It's not as if there is a possibility they will recover! There is a morphine pump at the nursing home with mum's name on it, it's been sitting there for 8 months! Why prolong their suffering?
Yes I had a Dr very apologetically telling me she had put a do not resuscitate order in place for my mum. This should not be something to apologise about. I would have expected this with all mums many health problems not including the dementia. The DNAR does not stop any necessary treatment so why apologise.
 

canary

Registered User
Feb 25, 2014
18,483
0
South coast
I agree about not prolonging life, but there are many people who do not feel like this, desperately want to hold on to their loved one and see any attempt to withhold treatment as tantamount to murder. The fact that there have been some high profile cases of doctors being convicted of killing their elderly patients hasnt helped this perception. Many doctors are wary of being sued as well, so even if their inclination is not to treat they feel they have to tread carefully.