Hi,
My mother is 81 and has a brain injury and more recently vascular dementia. I did look after her until I suffered catastrophic surgical complications myself. She is in a home.
My mother’s situation is killing me at the moment. She has advanced dementia and everything that comes with that. She cannot eat and is now being fed purées. She is currently on a drip but keeps pulling cannula out.
She is in a residential home that provides ‘nursing care’. I’m not confident of that as the carers are very young with no nursing qualifications.
How do we cope with this end of life stage, should we be insisting she is treated more robustly with say peg feeding or something as it seems she is starving to death. The hospital will discharge her as there is little fhey can do , the home say they will accept her so is that it ? It’s like rotating doors.
I’m her voice so I just need to know she is having the right treatment, no one seems to care anymore. I asked the nurse in the phone now what if she deteriorates again and she said there is a DNR in place ?? That upset me, do they just leave people starve to death these days ??
Feel so alone with this, I have 3 stoma bags following a botched hysterectomy and my memory has been affected by respiratory failure, I feel hopeless, I’m not sure what questions to ask, I felt that nurse was brutal. To me if she keeps getting readmitted then responds to treatment but is discharged again, isn’t it a case of poor care in the home or is it a case of no point keeping her alive as she’s going to die anyway, what about dignity and comfort ? Does that no longer exist ?
Has she been referred to a hospice?
Hello,
I’m sorry to hear about your sad situation. I went through a similar thing with my Dad last year. I found this page [link supplied] to be very helpful in explaining what was happening through the stages. There is a paragraph that talks about dementia and spoon feeding/nutrients etc.
I hope it may be useful to you, take care.
Thank you both for your replies,
She hasn’t been referred to a hospice. I have asked but in all honesty where I live it’s all a bit of a nightmare.
She remains in hospitsl and looks dreadful. She looks terribly frail snd is literally skin on bone. She is having some puréed food so at least I know she isn’t parched as having had a oerforated bowel and no food or drink for 11 days I know how horrific this feels, she can’t communicate so I am her voice,
Thank you for the link I will read that now .
I’ve thiught about CHC but no one seems that interested to be honest ( As in hospitsl staff ) I will look into myself if I can find a bit of energy.
Thanks both much appreciated x
That’s really helpful and has helped some of my worries 
Hi,
I am glad it has helped even if a little xx It is hard to read, but I think it helps to arm yourself with as much knowledge as possible. You suddenly find yourself thrown in to a situation where you need to be very ‘adult’ and it is scary and upsetting. Try to look after yourself too at this worrying time xx
That’s really helpful and has helped some of my worries
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Good morning,
An update and more advice please if possible.
My mum remains in hospital following pneumonia and high sodium levels. She has responded well to treatment. I saw the Consultant yesterday and what he said has plagued me ever since. He said she niw has a diagnosis of advanced dementia and is coming to the end of her life, I understand that. But he said were she to get another infection she would not receive treatment and they would leave nature take its course. He went on about all the research that backs this up and feels ‘sticking needles in her’ is not going to change anything. He feels she should be discharged back to the home ( residential) and let nature do its job, she can have pain relief if in pain. At the time I sort of accepted this. My mother is 6 stone, doubly incontinent, immobile bed bound, difficulty swallowing etc etc and on the day I saw the doctor she really looked as if she was ready to die. yesterday though she was sat up, vocal, eating what she was offered and holding my hand and reaching out for my face.
I don’t know if what the doctor had suggested is normal practice.
I asked about nursing assessments , DST etc and he said there was no point as the outcome will be the same, he was a nice doctor , old school , 35 years experience but I’m just not sure.
They are supposed to be discharging her on Monday.
Insist on hospice care if you don’t trust the home.
How is your Mum now Worrywart?
How is your Mum now Worrywart?
Hi all,
Following on from last post my mother was discharged with a few weeks expected to live. I had had a meeting with consultant who said she could go back to residential home she didn’t have nursing needs and CHC didn’t apply. She went back to the home with a palliative care plan in place. It was explained to me when her time came, she would have access to drugs to ease the transition.
The home closed down the next day and I never saw her for 5 months. She remained stable, essentially a breathing shell but taking nutrition .
She died yesterday. She started to show some signs of breathing problems about 1130, the doctor was called at 1230, he refused to come out. He sent a script to the chemist for the drugs as there was no just in case box in the home. The home phoned 3 more time’s and doctor wouldn’t come. A nurse did arrive but she had no drugs. The drugs arrived an hour after she died. She died A horrible death, distressed and gasping for breath over a period of three hours.
I am heartbroken and very angry,
Would you complain or if someone detiorates quickly is this what happens. The surgery is blaming the home and vice versa.
Thank you all
I would DEFINITELY complain, to save anyone else suffering. Complain to the CCCG about the doctor, and CQC for the failure to ensure the required medication was available when needed, in their box!
When my mum was in pain, as I had POA, I told the doctor that relief of pain must be her top priority, regardless of the consequences. She died peacefully in her sleep.
Penny I am so sorry I never responded. The date of your post was the day the home lockdowned, she died a few days back. If you look at latest post that wasn’t the experience I wanted for her 
Thank you. I have submitted a complaint and the doctor did ring. They home rang at 1230 and he refused to go out as I stated. He went through the logistics how it would not have been possible to get there in time etc and basically tried to distract from the point. The surgery is 2 minutes from the home.
It seemed every step of the way is a battle but at least now her battles are over.
Il see what they say, they will probabky blame Covid but surely it’s not reasonable for someone to suffer for 3 hours before death Especially when a palliative care plan is in place
Hi,
I can only suggest choose a better care home?
Some are better than others. Look for older staff and as the manager to see their qualifications.
Look for supervised, communal mealtimes.
Good luck, and I hope things improve.
As a person declines, instead of accepting their reality and requirement for help, many reject it and try harder to do thongs for themselves that they can no longer do.
Don’t worry as this is natural.
At some point you have to let go and let nature take its course. It doesn’t mean you don’t care, and your relative is still being cared for.
Hello ,
So sorry to hear that. Apologies my reply was out of sync with the posts. What you have described is a natural death which can be noisy with the breath rattling. This is normal and there is little a doctor would do. It is more distressing for the onlooker than the person. What is lacking is any prior information to the family of what to expect, which leaves people feeling powerless and not understanding what is happening. That’s my view. The process of dying is never discussed. Therefore it is a shock. The doctors lack of reaction is because they’ve seen it all before and they can’t do a lot. Their job does not entail sitting by bedsides of those who are passing. That’s for family and nurses.
Might be annoying and distressing to you, but that is the harsh reality.
If you feel the care home has let you and your mother down in these distressing circumstances then you can prosecute the care home. They should have been better prepared for end of life care.
See citizens’ advice. They are very good.
Sounded a complete nightmare.
There is a lot of task allocation when it comes to what doctors do and don’t do, and where the care home takes over.
You will be able to point to where they did not do their job as expected of a care home at end of life.
Particularly if from your experience there was a breach of duty.
Good luck!
old topic, locked, usual reasons.