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Carers UK Forum • In hospital and end of life care
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In hospital and end of life care

Posted: Sun Feb 16, 2020 2:05 pm
by Worrywart
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 ?

Re: In hospital and end of life care

Posted: Mon Feb 17, 2020 8:28 am
by bowlingbun
Has she been referred to a hospice?

Re: In hospital and end of life care

Posted: Mon Feb 17, 2020 11:03 am
by Sydneyaus123
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.

https://www.scie.org.uk/dementia/advanc ... inking.asp

Re: In hospital and end of life care

Posted: Mon Feb 17, 2020 10:57 pm
by Worrywart
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

Re: In hospital and end of life care

Posted: Mon Feb 17, 2020 11:14 pm
by Worrywart
Sydneyaus123 wrote:
Mon Feb 17, 2020 11:03 am
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.

https://www.scie.org.uk/dementia/advanc ... inking.asp
That’s really helpful and has helped some of my worries 🙏

Re: In hospital and end of life care

Posted: Wed Feb 19, 2020 9:56 am
by Sydneyaus123
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 🙏
[/quote]

Re: In hospital and end of life care

Posted: Sat Feb 29, 2020 9:43 am
by Worrywart
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.

Re: In hospital and end of life care

Posted: Sat Feb 29, 2020 1:40 pm
by bowlingbun
Insist on hospice care if you don't trust the home.

Re: In hospital and end of life care

Posted: Sat Mar 07, 2020 8:19 pm
by Penny
How is your Mum now Worrywart?

Re: In hospital and end of life care

Posted: Sat Mar 07, 2020 8:20 pm
by Penny
How is your Mum now Worrywart?