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
Shaun,
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.
Oh, Shaun, that’s a horrible response from the hospice. Did they say why? It’s an indictment of the NHS (one of many, alas), that your father can’t be somewhere more ‘peaceful’ and ‘appropriate’.
As for the chaplain, I guess ‘form a queue’? He can’t be busy ALL the time?
Re the heat - I hate the ludicrous overheating of hospitals! When I had to be there once overnight (very pregnant), I couldn’t bear it, and found the family waiting room, opened a fire door, and sat out there in the middle of the night! It was winter but it was the ONLY place that wasn’t like a furnace. Absolutely ludicrous!
Wondering if I can get private carer from an agency to help erelieve a few hours 
Hospitals used to have something called The League of Friends, which consisted of volunteers helping those in hospital in various ways. I don’t know what the modern equivalent is, but surely there is ‘something’???
If he has Parkinsons, would the various Parkinson’s support charities be able to suggest something, or even supply someone local to sit with him for a while??
It’s a grim, grim vigil, and I remember it from my husband’s time in hospital.
The League of Friends ?
Internet search using those four words … post code lottery at best.
Spose dads lucky to have family. where are the other patient famillies and friends to help them. ward usually empty visitors. no one has any time…
Each day different for dad as lots of agency and information doesn’t always get accurately handed over. Requiring I thought there would be cleaners looks like his room hasn’t been mopped for ages…
Shaun, that’s not acceptable. Ask to see the hospital housekeeper, might be called Facilities Manager.
Hey Shaun
Sounds a really hard situation for you. Sorry if this has been explored before, but is there anyway he could go home with family/carers coming in? Or could a nursing home be an option? Does he have to be in hospital? As it sounds as though his needs are quite high he might be eligible for Continuing Heath Care? This can be at home. Has anyone from the hospital explored this with you?
Shaun, I agree.
Apart from the fact that what the hospital doctors seem to want and expect is for your father to ‘die as quickly as possible and get it over and done with so they can get his bed back’ (sorry if that is unfair on the doctors, but it does seem to be what is coming across from your posts describing their attitude!), what IS ‘wrong’ with your dad.
Why is the hospice saying he isn’t eligible for them? Do they therefore think he is NOT dying?
But I do think that EITHER he is ‘dying’ and therefore eligible for a hospice, OR he is NOT dying, in which case, he can’t just go on being in hospital indefinitely!!!
Are the doctors saying that he MIGHT ‘get better’ to ANY extent at all? Or do they just expect him to vegetate ‘as is’ and if so, for how long?
He seems to be trapped in a no man’s land where no one really has a clue what is ‘likely’, and everyone is ‘washing their hands of him’. That is jut not acceptable.
What medical care DOES he need?
My understanding from my own husband’s end stage was that if he needed to be on an intravenous drip, he HAD to have a nurse ‘on call’. So that would mean either a hospital, a hospice, or hiring a private nurse to be with him at home.
So, does your dad NEED to be on an intravenous drip? If he doesn’t actually NEED it (what is it dripping into him, by the way?), then that gives you much more flexibility. He ‘could’ come home, with district nurses coming in daily??? Also, do ring round hospice charities that MIGHT also do ‘hospice at home’ (that was what my husband had). Basically the hospice nurses supplemented the district nurses (they worked in cahoots), and were also ‘on call’ for emergencies (eg, my husband fell out of bed once in the night).
If your dad is on some kind of intravenous painkiller, then usually they can be administered via a sub-cutaneous syringe driver, which is a needle permanently inserted just under the skin (arm, hip, wherever) by the nurse, but which then stays there, attached by a short line to a small box with the drug vial in it, that seeps into the system. It does NOT need a nurse constanatly there (both my husband and MIL were on one at the end).
Finally, IF your dad is still regarded as having legal capacity, he can discharge himself irrespective of any risks to himself.
My friend’s mother was in hospital (where she’d caught MRSA, sigh), and was discharged basically ‘sent home to die’. She was taken off all her meds (for heart diseases), and came home. The docs gave her two weeks…she lasted, very well, for nine months, and died peacefully at home (with a Marie Curie nurse, as they don’t only do cancer!).
You’ve been now with your dad a LONG time in hospital, and nothing seems to be ‘happening’. If he isn’t going to die ‘any day soon’ surely it is possible for him to get out of hospital, whether that is to a hospice, or a nursing home, or even ‘home home’…???
PS - surely your BIG ‘pressure point’ on the hospital to ‘sort something else out’ for him, is that surely they MUST want his bed back???