End of life

[Worrywart]

Hi all,
My mother had a brain haemorrhage 8 years ago, long story but owing to my ill health she ended up in care. She now has vascular dementia amongst other things,
She has deteriorated massively this year and over Christmas she has had pneumonia and another small bleed. The home she is in is a residential Care home that takes dementia patients - I think the care is ok but I’m not sure it’s enough as I’m saddened to say I think she’s approaching the end of her life. I’m not a doctor but she is detiorsting before my eyes, not eating or drinking and has now come out in a massive awful rash.
Who makes the decision she is approaching end of life and if that is the case should she have a different level of care, she seems agitated she’s itching and not comfortable, I’m not happy with the situation and have come home tonight with this weighing heavy on my mind. Obviously being a weekend I’m limited as to what can be done but has anyone been in this awfully sad harrowing situation please,
Thank you

[Chris From The Gulag]

Hi Worrywart.

Who makes the decision she is approaching end of life and if that is the case should she have a different level of care, she seems agitated she’s itching and not comfortable,

Try as I have done , no definite answer as to " Who " that jumps out at you from an Internet search.

The most obvious candidates will be the patient's gp or , if a regular NHS hospital patient , a consultant.

I assume regular check ups from whichever doctor visits the nursing / care home ?

For a general guide , the NHS web site :

https://www.nhs.uk/conditions/end-of-li ... it-starts/

A little more meat when one looks at palliative care :

https://www.mariecurie.org.uk/help/supp ... -life-care

CHC / NHS Continuing Healthcare ?

Possibly.

Question that arises ... should CHC have been considered earlier ?

Was an application ever made ?

Even mentioned by the gp / hospital / nurse at care home ?

Not a definite answer ... I hope enough to provide some assistance at this difficult time.

[bowlingbun]

When my mum was very ill, I googled "Signs of Dying" and found some really good articles written by the hospice movement, which explain about how the body slowly shuts down as the organs become less and less efficient at processing food and water. I would urge you to read these articles. In fact, mum lived another 2 years, one minute she seemed death was immininent, next visit she was her usual self, I never knew what to expect.
I'm very concerned that mum has a rash, and think the home should ask the GP to visit and check it out. Does the GP communicate with you, or hide behind "patient confidentiality"? If so, you can still ask what generally happens in these general circumstances, and they should explain without breaching confidentiality.
Maybe mum has had enough, if she is not enjoying life?
Much as you would hate for her to die, could you really wish her to live many more years as she is?
This is a very difficult time for you. Be kind to yourself.
Plan for the worst, think about which funeral director to use, her favourite music to play at a service, write it down in a notebook or similar, recognising that you might need it today, or maybe in a year or two.
Definitely ask the GP to make a Fast Track CHC Assessment. Mum's was absolutely determined to save the NHS money, and by the time he'd got round to do it, she had only 36 hours left.

[Chris From The Gulag]

Definitely ask the GP to make a Fast Track CHC Assessment.

Main CHC thread :

https://www.carersuk.org/forum/support- ... read-35998

Section :

FAST TRACK NHS CONTINUING HEALTHCARE ( NOT JUST FOR END OF LIFE ! )

( Your posting in June 2018 ... " Mother didn't qualify " ... 19 months ago ... nothing happened in the interim ???

Another two sections ... same main thread :

CHC : APPLIED FOR BUT REFUSED ?

DEMENTIA ? )

[Worrywart]

Thank you for your replies.
It’s all so difficult. The reason mum went into a home is I went in for a hysterectomy and they perforated my bowel, I now have a fistula and permanent I’ll health. There is no one else to help us, I have a sister who tends to leave all such things to me, she has young children.
My mother is absolutely not enjoying life Infact she seems in a state of distress sometimes, I don’t think the care hime are doing enough because they are busy, they seem to think it’s great if she sleeps for 15 hours. She is o my taking sips and barely eating, her haemoglobin has plummeted, I feel she could die any minute but as you say this could go on for months.
The rash is horrible, and it’s bothering her. It’s a Sunday , I feel like ringing out of hours GP but I’m just not sure of anything anymore, the system is in freefall it seems. I know getting through To GP on a Monday is all but impossible and I have hospital at 1.
Sorry just feel I have no one to talk to on this,
As for CHC well I have tried but I’m told she has no nursing needs but it’s so much more than that isn’t it, again another minefield,
My gut feeling is things are not as they should be,
I’m going to read the links you’ve all provided, thank you.

[Chris From The Gulag]

Your welcome.

CHC ?

As for CHC well I have tried but I’m told she has no nursing needs but it’s so much more than that isn’t it, again another minefield,

Perusal carefully ... as opposed to read ???

Being told is one thing ... applying for is a another ???

[Worrywart]

Thank you
How do I do that doesn’t it take social worker and several months ?

[Melly1]

Hi Worrywart, I would definitely ring the out of hours GP. State how distressed your Mum is, how due to her condition she is unable to say what else is wrong. It was my understanding that CHC can be fast tracked for dying. As your mum is in a care home, not a nursing home they probably aren’t geared up to the sort of palliative care she needs. CHC could fund extra end of life care for and keep her where she is.
Alternatively, you could make enquires at the local hospice either to see if they have a bed, or more likely can offer outreach support.
Your main aim is getting her comfy so push for an emergency GP visit, try and be there when they call.

Melly1

Ps fast track CHC shouldn’t take more than 48 hours, the GP or a hospice can help.

[Chris From The Gulag]

How do I do that doesn’t it take social worker and several months ?

The very last person is a social worker !!!

https://caretobedifferent.co.uk/nhs-con ... -involved/

A social worker has only one function inside CHC decision making ... to represent the interests of the LA ... NOT THE PATIENT !!!

If you want your car serviced , why go to a florist ?

FAST TRACK NHS CONTINUING HEALTHCARE ( NOT JUST FOR END OF LIFE ! )

[bowlingbun]

"No nursing needs"?!?!

Surely she needs so much help because of her medical problem??