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Overnight hospital carer for dad with parkinsons - Page 3 - Carers UK Forum

Overnight hospital carer for dad with parkinsons

Tell us a bit about yourself here.
Been a rough journey in the hospital. Haven't felt much kindness or Compassion. Doctors had decided that he was a dnr. And not suitable for critical care. Daily they told us he xwasc going to die now they say he has advanced Parkinson. They ve pulled away fluids and being fed using a tube. Then they asked if he wants to live. Dad is fortunate his family advocate a him to live. We see a human with love in his Eyes, warmsmile and a cuddle and arm wrestle and they see an eunresponsive potato# What about those who don't have family and the doctors insist that treatment is futile or that your quality of life will be so bad That what's the point or keep questioning you because you want to live or refuse to continue treatment as they believe you won't get better. Very worrying.
Hi Shaun
It is such a personal decision and you know your father better than anyone and know what he would wish for. Whatever you decide, (and there is no right or wrong) you need to be comfortable with your decision in the years ahead and have no regrets. Sending virtual hugs at this difficult time.
Shaun, sadly, that is EXACTLIY why hospice care is SO much better for those at end of life......because it is a much more 'sheltered' environment. Ironically, hospice-care is NOT always 'end of life' - my husband's hospice-at-home nurse said it isn't uncommon for patients to 'get better' and actually come home again. So it isn't necessarily a 'one way street'.

I DO understand your fear and frustration - that sense of the doctors 'turning their backs' on someone you love was what I felt myself with my husband. I kept wanting to yell at them 'DO SOMETHING!'.....but they didn't. They couldn't - it was not in their medical power to 'stop' him dying.

It is a hard, hard time to endure....
Hi trying to get enough nutrition down him but struggle with swallowing problems. While I m tel about my dad I do feel sorry for people without family advocating them as iive learnt the medical people can be very pushy and uncompromising and without compassion. In their eyes they've seen it all before and so can talk about Trends, likelyhoods and high probabilities. More should be done in hospitals to protect patients wishes -especially those who don't have family. The pressure from the doctors can be immense.
I spoke to hospice who only do end of life and pain control
Please Google "Signs of End of Life" and you will find articles about how the body knows how much food it needs. I only did this when the last of our four parents was very, very ill. Having read the articles I just wished I'd done so when the first parent was ill. I know from my own experience just how hard it is to google this, it made me cry, but you need more information.
Shaun, yes, hospices are for end of life care and pain control at end of life, that is true. BUT, don't forget what I told you, that not everyone who goes into hospice care actually dies.......some do recover, even if not 'for ever' (none of us recover 'for ever' if you think about it).

As for the pressure from docs, they, too, can ONLY go by what they have seen previously. They apply 'past statistics' to current patients, sometimes accurately, sometimes not.

Do you feel you and your father are being pressured to 'let go' and 'give in'?

Remember, too, that you are exerting 'pressure' in the opposite direction - pressure to keep your father alive, and even for him to 'get better'.

I'm not sure if it has been mentioned here already, but I wonder whether talking to the hospital chaplain may help you at all? They are not, I believe, 'denominational', and are, I would presume, chosen (or choose themselves) because they are themselves 'good' at helping patients and families at these very, very difficult times.

In the end, though, your father's life is not in your hands, nor even his. Reaching that kind of 'acceptance' - however desperately hard (and it IS hard - I've been there) - may bring you better peace of mind.

Humans want desperately to 'know'.....it's the uncertainty and fear that is the worst to bear.

Shakespeare sums it up, when I think it is Brutus before his battle with Octavian and Mark Antony, wondering upon the eventual outcome:

'Oh that a man might know the end of this day's business ere it come.
But it sufficeth that the day must end, and then the end is known.'

In other words, we CANNOT 'know before it happens' what it is that is to happen. Your father MAY pull back to life, he MAY not.

We can't tell. And neither can his doctors. They are preparing you for 'the worst' which may happen - or may not. Bearing the uncertainty is your task now.....
Shaun, I'm glad Jenny mentioned the Chaplain, it was in my head but not in the thread. I am not particularly religious but my father was at end of life at Christmas time and so the Vicar was on site for Carols. He came in to bless my father who was too ill to attend the service and it was really very moving. You may find it helps you find peace knowing your father has a blessing for may may be ahead.
These days, ministers seem to appreciate that not all of us are religious, but that we all seek comfort and consolation, and therefore try and adapt what they say to that end.

Only thing is - if your father sees the chaplain, he might 'assume the worst'?? That was the reason a friend of mine nursing her mother through end stage decided - that calling the vicar to visit might scare her mother, so she never did.
Thanks for replies. Hospice said NO. chaplain busy. Hospital very humid tonight. Full moon. Like most nights sad needs Close attention. Coughing and incontinence. Requiring regular repositioning. Fan on all night but still hot.