Hospital saying no more interventions

[Worrywart 2]

Mum has advanced vascular dementia and al the horrors that come with it. She’s been in hospital for 10 days with pneumonia. She has responded well, and her bloods are now almost normal she’s had 5 admissions since September with similar infections. We saw consultant a few days ago and he gently explained she was approaching the end of her life. He said that he didn’t fell it was now right to keep treating these infections as it was delaying the inevitable. So he instructed no more blood tests, or cannulas, to encourage food but never force or insist, if she said no it was no. She is due to be discharged on Monday back to a residential home, I asked about nursing care and he said it didn’t matter where she went the outcome would be the same.
im concerned about them not treating her and wondered if this is normal. Each day is different with her but yesterday she was mum again, at least her eyes told me that. She was animated and vocal . I csnt bear the thought of the next infection being allowed to kill her .
im wondering what experience others have had please ?
i also mentioned chc but they said it made no difference as to nursing or residential care.
lim quite confused, I’m also disabled following horrendous hospital complications , I have 3 stoma bags, I’m wary of hospitals now and I just want what’s right for mum,
she is dou my incintinent, can’t speak or move much and weighs 6 stone but she fights on yet they are saying next time an infection hits we should leave her die.

 

[Palerider]

Mum has advanced vascular dementia and al the horrors that come with it. She’s been in hospital for 10 days with pneumonia. She has responded well, and her bloods are now almost normal she’s had 5 admissions since September with similar infections. We saw consultant a few days ago and he gently explained she was approaching the end of her life. He said that he didn’t fell it was now right to keep treating these infections as it was delaying the inevitable. So he instructed no more blood tests, or cannulas, to encourage food but never force or insist, if she said no it was no. She is due to be discharged on Monday back to a residential home, I asked about nursing care and he said it didn’t matter where she went the outcome would be the same.
im concerned about them not treating her and wondered if this is normal. Each day is different with her but yesterday she was mum again, at least her eyes told me that. She was animated and vocal . I csnt bear the thought of the next infection being allowed to kill her .
im wondering what experience others have had please ?
i also mentioned chc but they said it made no difference as to nursing or residential care.
lim quite confused, I’m also disabled following horrendous hospital complications , I have 3 stoma bags, I’m wary of hospitals now and I just want what’s right for mum,
she is dou my incintinent, can’t speak or move much and weighs 6 stone but she fights on yet they are saying next time an infection hits we should leave her die.

Its a hard road to walk when this happens, lots of different feelings come up. But the reality is that dementia is the culprit in all of this and continuing to treat infections that aren't the cause of this isn't for the best, as much as that seems final and painful. Antibiotics won't stop the disease progressing and sooner or later they won't work as the body shuts down due to the disease which has an end stage, its what dementia does and unfortunately there are no cures for what is inevitable. I think also we (myself included) develop a false hope that it won't get much worse, but it does as you know only too well.

The decision not to treat (allow natural death) is quite common in advanced diseases not just dementia, but that doesn't mean your mum shouldn't be kept comfortable as the end of this dreadful road approaches. Have you caught up with her GP and checked to see if end-of-life medications are in place for use should she take another downturn and not recover? I would certainly be making sure this is in place and spend as much time as you can with her

 

[Louise7]

She is due to be discharged on Monday back to a residential home, I asked about nursing care and he said it didn’t matter where she went the outcome would be the same.

i also mentioned chc but they said it made no difference as to nursing or residential care.

Whoever told you the above is misinformed. Hospital tend to want to discharge patients quickly but if your Mum has nursing needs it's important that she is discharged to the right environment. Has anyone from her current residential home been to asses her in hospital to confirm that they are happy to take her back and can still meet her needs? If they haven't, and you think that your Mum's needs have changed since entering hospital and she may now need nursing care, I think it would be worth having a chat with them just to make sure that they are happy to continue to care for your Mum.

 

[Worrywart 2]

Whoever told you the above is misinformed. Hospital tend to want to discharge patients quickly but if your Mum has nursing needs it's important that she is discharged to the right environment. Has anyone from her current residential home been to asses her in hospital to confirm that they are happy to take her back and can still meet her needs? If they haven't, and you think that your Mum's needs have changed since entering hospital and she may now need nursing care, I think it would be worth having a chat with them just to make sure that they are happy to continue to care for your Mum.

Thank you
they have said they will take her back. It’s a small home in the town where we live which is good but in keeping with many homes, most staff are very young and thin on the ground at night. I like the manager but I’m not sure they are upto the job . That said if it’s just a case of keeping her comfortable then maybe they are but I just feel very uncomfortable with all of this.

 

[Worrywart 2]

Its a hard road to walk when this happens, lots of different feelings come up. But the reality is that dementia is the culprit in all of this and continuing to treat infections that aren't the cause of this isn't for the best, as much as that seems final and painful. Antibiotics won't stop the disease progressing and sooner or later they won't work as the body shuts down due to the disease which has an end stage, its what dementia does and unfortunately there are no cures for what is inevitable. I think also we (myself included) develop a false hope that it won't get much worse, but it does as you know only too well.

The decision not to treat (allow natural death) is quite common in advanced diseases not just dementia, but that doesn't mean your mum shouldn't be kept comfortable as the end of this dreadful road approaches. Have you caught up with her GP and checked to see if end-of-life medications are in place for use should she take another downturn and not recover? I would certainly be making sure this is in place and spend as much time as you can with her

Thank you.
the last time this happened ( before xmas) palliative care was mentioned and the GP came out and we discussed this. But then she got pneumonia and another GP said it was treatable and admitted her to hospital. So I suppose if it happens again and the home calls they GP, he could try and admit her but the hospital are saying there is no point and I’m not sure they will accept her. It’s just awful and I’m in turmoil.

 

[canary]

When mum reached end of life it was a slightly different scenario in that she broke her hip and following surgery she stopped eating and drinking. She was sent to hospital, but all they did was rehydrate her and send her back.

Following this I had a difficult conversation with her GP - it went along the same lines as your conversation with the consultant, ie to allow her to die naturally, although being kept pain-free and comfortable. Yes, there comes a time when medical intervention does not extend life, but merely prolongs their death.

What I wanted to say is that mum was in a care home, not a nursing, but they accepted her back. She had a "just in case box" of all the drugs that she would need, prescribed by the GP and kept at the care home. The carers tended to her beautifully and once she needed the drugs the District Nurses were called in to administer them. Initially she had injections, but then had a syringe driver. She passed away peacefully, in a place she knew and had become home, tended by people she recognised and with loved ones with her.

So, yes, a care home can deal with end of life - it does not have to be a nursing home. If your mums care home will accept her back, then I would not have concerns.

 

[Grannie G]

Hello @Worrywart 2

The fact your mum has had five admissions since September shows her immune system is failing.

My husband had three bouts of pneumonia in a short time and I was given the same advice as you. The antibiotics were continuing to be less and less effective and it wasn`t fair my husband should have so many admissions to hospital which in themselves were confusing and unsettling.

It was really upsetting hearing this from the doctor even though he was as gentle and kind as he could have been so I know how you feel.

Like @canary mother, my husband`s home was happy to have him back and wanted to look after and care for him. It sounds as if you don`t have much faith in your mother`s home.

When palliative care is advised, the district nurses come into focus. My husband was visited by the district nurses daily until he died. Ask the home about palliative care.

I`m not surprised you are in turmoil. I hope the replies you have had will help.

 

[Lawson58]

Could I just ask what perhaps your mother might have wanted, what she would have told you had you asked what she would have wished as she approaches the end of her life?

Sometimes people wouldn't want us to prolong their lives when they have been suffering for long periods. They are content to let go when they have had enough and though it is hard for those who wait and watch, we have to accept that this how things are meant to be.

I wish you strength and peace for the road that lies ahead.

 

[Worrywart 2]

Thank you all so much.
my concern is whether the home is up to the job. The carers are in the main, very young. , are they equipt to deal with end of life and palliative issues. The home say they will take her back and I’m sure they will care for her but will it be enough especially as the hospitsl has decided not to treat infections etc. I have spoken to the manager and I’m assured it will be fine. That’s not enough. I hate that word ‘fine‘. I am rather paranoid as I went in for a hysterectomy and ended up with three stoma bags, i was told I would be fine, I’ve never recovered - I could write a book about hospitals! So yes I probably do overthink everything but she is my mum and she has no one else.
when does on become eligible for a hospice? Or does that not apply to dementia patients ? or should I just let go and keave her go back.
my friends dad died in the same home, he had a horrible death, he turned black in the end, she is still totally traumatised. She said the home were ok but she was there every day making sure he was ok, I’m disabled myself and cannot always promise to go everyday and that also worries me greatly.

 

[canary]

(((((((((((((((((((hugs)))))))))))))))))) @Worrywart 2 - I can hear your concern.

Hospice is not really a suitable place for people with dementia - the workers there do not have the experience of dementia needed.

Im afraid that when someone with dementia dies it is not like it is shown on TV. The body closes down slowly over days, weeks, or even months. There are physical changes and it can be quite traumatic if you are not expecting it. I suspect from what the consultant said that your mum is already on this path.
The care homes role will be to wash her, turn her and attend to personal care. It will be the District Nurses who will be in charge of painrelief and other medication and they are very used it.