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Vicious cycle

15moterbike

Registered User
Jan 17, 2022
131
0
I have written on here recently but wasn’t sure how to post on eol part . Mum has Lewy body Parkinson’s for around 6 years spent the last 2 years in bed haunted and distressed no idea who we are . Had covid a year ago , has been on puréed diet for a long time and before Xmas fluids were increased to the thickest they can be as she was coughing on anything else . She has no life quality at all for a single minute , she Has lost alot Of weight over 12 per cent of body weight and looks so thin , I live away but saw her last week . She is now needed sub cut hysoscine for secreations and now has a chest infection. The dr was called the weekend and called me and suggested and I agreed no antibiotics should be given . she has needed suction at times via a portable machine . She is still coughing but the staff are still trying to feed her which is a vicious cycle I’m sure . I’m more than aware she may rally again but this will leave her even more weaker . other family members have visited the last few days she is still trying to say words as always but not making sense and as always no interaction with them . Her eyes are sore and look infected . It’s so sad and cruel
 

canary

Registered User
Feb 25, 2014
18,448
0
South coast
(((((((((((((((((((((((hugs)))))))))))))))))))))) @15moterbike
This is a very hard stage - seeing them decline so much can be horrifying.
I think it is right to offer food and drink, though not to push it and accept that your mum may (will eventually) refuse. Unfortunately, there is no knowing how long this stage will last and it can be an emotional roller coaster of rallies and further declines. Im sorry.
 

15moterbike

Registered User
Jan 17, 2022
131
0
(((((((((((((((((((((((hugs)))))))))))))))))))))) @15moterbike
This is a very hard stage - seeing them decline so much can be horrifying.
I think it is right to offer food and drink, though not to push it and accept that your mum may (will eventually) refuse. Unfortunately, there is no knowing how long this stage will last and it can be an emotional roller coaster of rallies and further declines. Im sorry.
Thankyou to me they are feeding the infection , this started before Xmas with the drying up injections the infection is now bubbling away the food they give feeds the infection even more makes the coughing secreations worse this would not happen if she had cancer believe me x feed suction injections totally cruel , she has declined so much in the last two months but is not alloweed to surrender to this hell , it’s shameful
 

15moterbike

Registered User
Jan 17, 2022
131
0
Travelled to see mum today . She looked like she lost more weight very skinny now .Her record book did say she ate okay yesterday . Coughing a lot during feeding and inbetween which is the swallow continuing to weaken . Still shouting at times but as for years nothing makes sense and never makes eye contact . I’m sure this will continue but just hoping the end will come peacefully rather than chocking . No qol at all for years bedridden for 2 . So cruel
 

15moterbike

Registered User
Jan 17, 2022
131
0
So we have been told today mum is needing regular suction and hyoscine and is jerking , my uncle visited and said her whole body was jerking, I spoke to the home a gp had been requested this morning as he felt her Parkinsons meds aren’t working and mum should have a syringe driver . This has not happened I just called night staff who inform me they will chase this tommorow . He also said she had been given some fluids and soft diet which should not be happening when needing these interventions . I have asked them to get the dr to ring me tommorow at work . will See what tommorow brings but this is not palliative care or anyway to treat her .I feel the nurse tommorow a regular one will fight any changes but will talk to the dr hopefully . It’s so so cruel , thanks for listening
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,198
0
High Peak
I'm so sorry to hear this - I can't imagine what it must be like to watch your poor mum going through this torture.

I really, really hope the doctor and nurse can speak to each other (and to you) and get on the same page re. the syringe driver. Morphine is probably the only thing that can give her any peace now.
 

Sheelagh7

Registered User
Feb 25, 2022
59
0
@15moterbike I am so sorry to hear your mum is still suffering, it is so awful the way dementia patients have to go through this at the end of their life. I am bitter that my mum had to suffer an extra year and was placed in a dire nursing home, by the time she was finally assessed she was too ill to move. The morphine pump was on standby for 10 months but never implemented. I noticed a swifter decline after having a meeting with her GP and he decided it was not in her best interests to continue with antibiotics and doubled the strength of her morphine patches. Mum was eating (soup & thickened drinks) up until 3 days before she died. As @Jaded'n'faded says hopefully the GP and nurse will work together to ease your mum's suffering and let her be at peace.
 

15moterbike

Registered User
Jan 17, 2022
131
0
Thankyou as I thought the gp arrived yesterday with the permanent nurse . The only changes they are making are putting her back on the secreations patches that burnt her skin before and small does of oromorph which I don’t no how she will swallow . I suggested how one day they say mum should be in a driver now and the next not . My brother visited she was thrashing around the bed legs as well this is new and obviously a decline in the efficiency of her Parkinson’s drugs . The suction machine was by the bed and she was coughing lots . It was suggested that the terrible faces she pulls are not pain but just pulling faces . They will continue to feed her until she chocks or stops herself which I pray won’t be too far away . I have cared for many cancer patients they would not be treated like this but with dignity and respect . The new nurse who called the gp is on tommorow so I will call him to see how he feels about decisions made . I can’t describe how cruel this is especially with the decline in Parkinson’s . I’m travelling to visit next week . They know how we feel . thankyou
 

Frank24

Registered User
Feb 13, 2018
346
0
All I can say is I was shocked by what substituted as end of life care for my mum x there’s this idea that people are helped on their way but this was not my experience
 

Violet Jane

Registered User
Aug 23, 2021
854
0
People are not 'helped on their way' any more. On the contrary, people who have reached the end of their lives have their lives extended to no purpose by drips, nutritional drinks and powerful antibiotics. Blame Shipman and the abandoned Liverpool Care Pathway. Doctors seem to be terrified of being accused of 'leaving patients to die' and are not initiating appropriate conversations with families; it is therefore left to the family to say that nature should be allowed to take its course, backed up with timely and adequate EOL medication. Care staff seem to be very nervous of giving morphine when it should, imo, be given on a precautionary basis given that people with advanced dementia cannot advocate for themselves and it's not clear whether they are experiencing pain or discomfort. I feel that people with dementia (and their families) get a very poor service from the NHS all through their illness and right up until death.
 

jennifer1967

Registered User
Mar 15, 2020
11,715
0
Southampton
People are not 'helped on their way' any more. On the contrary, people who have reached the end of their lives have their lives extended to no purpose by drips, nutritional drinks and powerful antibiotics. Blame Shipman and the abandoned Liverpool Care Pathway. Doctors seem to be terrified of being accused of 'leaving patients to die' and are not initiating appropriate conversations with families; it is therefore left to the family to say that nature should be allowed to take its course, backed up with timely and adequate EOL medication. Care staff seem to be very nervous of giving morphine when it should, imo, be given on a precautionary basis given that people with advanced dementia cannot advocate for themselves and it's not clear whether they are experiencing pain or discomfort. I feel that people with dementia (and their families) get a very poor service from the NHS all through their illness and right up until death.
the care staff are not allowed to give morphine injection, that has to be left to the district nurse unless qualified nurse in care home. they have the just in case meds but have to get someone more qualified to administer it. there was another hospital that was using too much morphine.
 

15moterbike

Registered User
Jan 17, 2022
131
0
The nursing staff where she is can administer these drugs . The discrepancy is between how one nurse can see she is deteriating and in distress and another who thinks it's perfectly acceptable. She won't have any antibiotics or drips that's all documented. It's clear she is in pain her face constantly screwing up and in the last week whole body Jerking . Suction machine by bed . Palliative care for dementia is dreadful.
 

15moterbike

Registered User
Jan 17, 2022
131
0
People are not 'helped on their way' any more. On the contrary, people who have reached the end of their lives have their lives extended to no purpose by drips, nutritional drinks and powerful antibiotics. Blame Shipman and the abandoned Liverpool Care Pathway. Doctors seem to be terrified of being accused of 'leaving patients to die' and are not initiating appropriate conversations with families; it is therefore left to the family to say that nature should be allowed to take its course, backed up with timely and adequate EOL medication. Care staff seem to be very nervous of giving morphine when it should, imo, be given on a precautionary basis given that people with advanced dementia cannot advocate for themselves and it's not clear whether they are experiencing pain or discomfort. I feel that people with dementia (and their families) get a very poor service from the NHS all through their illness and right up until death.
Yes It's not helping her along the way it's easing the pain in her face relaxing the thrashing around the bed she has no control over . Drying up the secreations and easing the cough . Unfortunately she will chock to death I have no doubt this will happen
 

15moterbike

Registered User
Jan 17, 2022
131
0
@15moterbike, is there someone more senior you could speak to, perhaps a palliative care consultant at the hospital?
I spoke to the nurse today who I spoke to in the week , he said mum was in a terrible situation with her chest she was in pain and parkinsons jerking much worse .he was astounded by the drs Notes but I believe the nurse that day influenced this . it was good to speak to him , I’m mortified how much she is suffering and I’m visiting this week which I’m sure will be shocking but I want to advocate for her .I honestly think she is coming to eol with No dignity . Totally shocking
 

Frank24

Registered User
Feb 13, 2018
346
0
This is unbelievably hard for you. I’m sorry your going through this and your Mum x
 

Violet Jane

Registered User
Aug 23, 2021
854
0
This is so awful. It's the last thing that you want to be dealing with but could you put an urgent complaint in to the surgery and ask for another doctor to review your mother's EOL medication urgently. You might add that you will take a complaint to the GMC. You might feel uncomfortable doing this - and I don't know whether other people would agree with this - but you could record what your mother is experiencing on your phone.

I find it hard to believe that this is appropriate EOLC. I don't believe that someone dying of another condition would be treated in this way.
 

Frank24

Registered User
Feb 13, 2018
346
0
I agree with Violet Jane. EOLC is horribly confusing and intimidating in this situation