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xzoecx Asked June 2014

My Dad is refusing all care following 2nd massive stroke. How long can he survive like this?

My Dad has his first stroke 10years ago and was affected on the right side- brain damage and paralysis. After a 10year fight to get to a point of independent living in a sheltered housing complex he had a mother massive stroke on New Year's Day affecting his left side. This meant that on too of not being able to speak since the first stroke he was left not even being able to understand anything and permanently bed bound. We now have him back at home where he is peg fed with carers and nurses visiting 7 times a day. However since Wednesday he has been refusing for nurses or myself to give him his medication, feed or fluids and it's a fight for the carers to even change him so he spends time soiled while we convince him to let us help him.
I need to know how long he can survive like this???
Without his anti coagulants, his digoxin, fluid and feed being the top of the list.
I do not want him to die in hospital so I just want to have some idea of what to expect if he continues to refuse everything.
Any advise would be appreciated. Zoe

xzoecx Jun 2014
Thanks for all your comments. I feel that we've got through this long and I don't want to fall at the last hurdle, therefore I want to respect what I think Dad would want if he could decide and he has always hated hospitals and spent far too long in them so I feel he should pass at home. The doctor came today and said there is no way of predicting how long someone will last with no fluids or medication, it's just a matter of waiting.
The palative care team are involved and visiting us tomorrow so I will just keep him comfortable and loved.

Eyerishlass Jun 2014
Call hospice.

Your dad may be confused and scared and that's why he doesn't want anyone near him. You're a good daughter for hanging in there with him and trying to get him the best care you can.

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kazzaa Jun 2014
So sorry for you but my friends mum was like this. He wants to go thats what i feel contact hospice and make the arrangements if mum was at this stage I think i would take her home now and make her comfortable or hospice.

My prayers are with you!

xzoecx Jun 2014
In response to 'shakingdustoff'- since the stroke in 2004, we built a level of communication up with him which can only be learnt through being with someone day in day out, almost like knowing the requests of a baby learning to talk, the mother tends to understand a babble that others may not. I would sit and have conversations at length with him, although he couldn't answer with anything other than an occasional yes or no, I knew he understood. However after the stroke on jan 1st the other side of his brain was damaged so it has taken the last 6 months to try and understand what he can and can't understand. It's very confusing and even being his main carer, I still don't know for sure but I can give examples like he can not understand simple commands 'close your eyes' 'show me your peg' and he can't therefore understand questions 'how do you feel?' 'Are you hungry'. But if I show him tea or coffee, he could point to a choice for example. He can use facial expressions to show confusion or anger. There's days when I know he is in there but at the moment the only thing he makes clear is no one can go near his peg, he pulls his duvet up and pushes hands away from his bed or himself. He even took the gloves off my hand today, when I tried to get to his peg and administer the meds.

xzoecx Jun 2014
Thank you for your response. I have always stayed realistic, it's something I've learnt over time to do and although my Mum has always been unable to as she so desperately doesn't want to let go of her husband at whatever cost, I have always acted on his behalf and put myself in his shoes. However the amount of times I've said to him over the years that its ok to let go, that we will be ok etc, he is so unbelievably determinate to fight on and has put up with a decade of the most undignified life just to watch my sister and I grow up and stay with us. Which of course I am glad of as he has been able to witness the life of his only grandchild which has given him so much joy.
There has been so many times since this last stroke that he has refused care in some form or another, mostly while in hospital but a few times in the 6 weeks his been home, but now this is on the back of him having a stomach bug which left him constantly soiled in bed mixed with the awful and unforgivable situation of the wrong incontinent pads being given which has meant they haven't been strong enough to hold enough. This has probably left him feeling awful and now resorted to this all or nothing attitude which is totally understandable. If he wants to call it a day now I totally respect his wishes I just want him to be comfortable and not in pain or discomfort. On a selfish note, if I prepare for the end again emotionally and he decides and things change again, I don't know how many more times we can emotionally take this situation. I guess I just wants answers that I can get, but advise or ideas are always welcomed as I don't know anyone personally in a situation anywhere near similar to this.

timbuktu Jun 2014
I would at least contact a hospice service and tell them what is going on. They can send someone to assess the situation and give you advice. I found hospice very helpful when my dad had leukemia.

GardenArtist Jun 2014
No one can tell you for certain how long he'll survive without meds, food or fluids - it's an individual situation.

Given that he's had two serious strokes and is taking anti-coagulants, if he refuses them then the likelihood of another stroke increses. If he doesn't take digoxin for his cardiac issues, it could be that the likelihood of a cardiac event will increase. Without food or fluid, he'll likely experience electrolyte imbalances and major organs will begin to shut down.

While I'm not one to lightly recommend hospice, it sounds as though your father has had enough and is ready to go. I don't mean to be blunt, just honest. It is his life and if he has nothing to live for, perhaps it's way of deciding that he doesn't want to live any longer. And that's something that I think a family must respect.

I hope this doesn't sound cruel; it's not meant to be, but rather to suggest that you can honor his wishes and do what he wants to make his passing easier. Respecting his decision and making him comfortable is the best thing you can do for him.

Kind thoughts go to you and your family during this stressful time.

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