since the grandmal happened at the hospital the medical pros got to see one of his for the first time--- they are 3 mins with no breathing.... i hadnt realized they lasted that long..NL

When I had my open heart surgery I refused to allow ANY of my family to be there during the surgery. My father tried to insist on being there in case something went "wrong". He wanted to refuse to let them do any life saving procedures or life sustaining procedures. That was not my wishes and he knew it but didn't care. I don't really relish the thought of going through some things but I'll get through them if they give me the chance of living on my own again. G tube isn't a terribly big deal in the scheme of things when the stakes are a person's life.

You will make the right decision.

Have you and dan discussed this at any time in your "pre stroke" life? Mike an I have had this disscussion many times and I am at peace with knowing just what he would want and what he wouldn't in this case. He had to have a G tube in during his initial stay in the hospital and he absolutely hated it at the time. He agreed to have it done but when it came time for them to insert it he tried to refuse it and they wouldn't listen to him, said doctors orders have to be followed. Well he let me know that from that point foward if he says no even after he agrees in the begining that they better listen to him he is the patient and it is his choice. I don't know what sort of mental capacity dan is in but if he is in his right mind and says no then I think he should be allowed to refuse without you over riding his decision. If he will discuss it with you try to talk him into agreeing to it, if he doesn't agree then let him have his wish. I don't know about his religious status and that is none of my business but if he is religious maybe you should have someone from the clergy talk to him. This is just my thoughts and I will be praying for you and dan. Let us know how things go.

OK, Nancy lets sort through all of this.Seizures can be life threatening. He has medications to help deal with this, but refuses to take them. He suffers severe depression and again refuses at times to take his meds. So does he truly want to die? Only you can answer this with any knowledge and history and that being so, are you willing to allow it? Is it the stroke and depression, or is it truly a desire to no longer live on?

So that decision made, A Gtube is a great resource, but will you have access to it. Can you hold him down and utilize it when need be? Bruce is twice my size, but in all fairness, I will win, that I am sure of. You need to have that same conviction. Personally Honey, my money is on you!

I do not live with the Depression issues that you do. Yes Bruce is depressed, from the stroke and the difficulty of recovery. You live in another world. His depression was existent well before stroke. I have no experience with that.

I do know, if Bruce told me he had had enough, I would honor that. But again in your case is it the depression or the stroke. So many questions.

As Jaime suggested, a Gtube is a quick fix and if you never use it, that is OK too. Can't hurt and will close over well if you never have need to use it. This is such a hard decision, but please do share and let us know. Debbie

Well Nancy all that info is out of my league of knowledge but I will say you are the wife and first person that can grant or give the OK to any medical procedure needed to make things better! Right or wrong is the doctors or specialist decision but I just don't know what else you can do in this case!

I know you are on pins and needles but anybody would so try to make the best decision you can! My wife got all that stuff in writing about what to do for me, with me because I got two grown kids that may want to step in and try to tell her what to do or control her doings for me!

What is a G tube? It would help to know that. I think if he's refusing his meds, he is just going to be making his life worse, without really understanding what and why it is happening to him. I'm thinking refusing to eat, drink, meds would result in his death, and I don't think he is able to get that. I would do it. If it's a feeding tube, Bob did have that until he was able to eat, and if he stops eating/drinking/meds, he'd get it back. My biggest question is does he understand that his seizures are because he isn't taking the meds? Or is it just "I hate the tube" without really understanding his life is at risk?

ethyl-- only for clarification dan didnt have depression prestroke-- ( he was way to active for depression) and i know some of that is the issue know a previously active ( very active) individual is now sedatary... the depression reared its head about month 4 or 5 post stroke.and has been relentless eversince. so for me it is the depression which is the stroke.. s dan could put on and yes dan could put on a stuggle but his resistance is more passive resistive. G tube is just another name for feeding tube... dan also had one for 3 months post stroke.. didnt seem to bother him to much... dan has a pretty good cognition when he wants to BUT a really bad short term memory..and most the time he does not want the cognition and with the global aphasia plays the yep game well without really understanding... but not always-- so there is a lot of difficulty just sorting those issues out...i think he wants to die but isent necessarily suicidal i know kinda a oxymoron -- but he would not activley harm himself ( say take a bottle of pills) but he will passivley harm himself ( like NOT taking his pills) he seems to have a process to his thinking... but it is stroke thinking....and man the docs are no help in this situation at all - this is a touchy ,touchy subject..and the decision will involve a ethics committee which takes some heat off me-- but i already know they are gonna of course say the g tube is appropriate... dan and i did discuss things but when you think "life saving procedures" ( extraordinary) you think of vegatative and ventilator not "this"... my thing with this is dan could do better if he would activley choose to do better to commit himself to life..... he is not strictly confined to a bed or a wheel chair-- he is relativley mobile with me to steady him at all times... he can swallow and eat, he is continent during the day,he is not a cognitive as we would wish but he gets his point across even with the global apahsia - when he chooses... so yes there are things he has lost-- they are the same things i have also lost with him.... they are also things that others have lost but have moved on and decided do the best you can....but i welcome all insight it helps my resolve to be approached with different angles of this.... any more comments are welcomed...thanks

You are in such a difficult place right now....facing some really big decisions. I hope you find comfort and support in this caring community on stroke net. Thinking of you and wishing you well... Cindy

Very, very sorry you are having to go through this Nancy. As a stroke survivor, my inclination is to ensure that other survivors are granted the same autonomy over their own lives as everyone else. However, I just posted about my own mental confusion after my stroke and how my wife stepped in and overrode my instructions, thereby probably saving my life. So, given how you describe Dan's mental state, it seems to me that you, at this point in his life, are more qualified to make decisions concerning his well-being than he is. And since you love him, I'm sure that whatever you decide will be in his best interest.

Regarding end-of-life decisions about life-prolonging technology and procedures, my opinion has changed since having my stroke. Before, I was opposed to any extreme measures and I regarded a feeding tube as one of those. Now, though, I realize that a feeding tube can be a temporary measure and isn't uncommon for stroke victims.

My thinking now is that I wouldn't want any procedure that was permanent in nature, but if it was considered temporary going in, that is, if there was hope for improvement after a period of time, and and end to the procedure whatever it was, I wouldn't automatically be opposed to that, especially if someoe I loved and trusted was making the decision.

So, realizing that someone may have to make such a decision for me someday, or that I may have to make it for someone else, my advice is to do what you think should be done regardless of what he might be saying and don't second-guess yourself. When it comes down to it, doing our best is all we can do in this life. Good luck with whatever you decide.

dan has had a good last 2 days--- predictable the good just as predictable as the bad to come around the bend is as well... pessimistic or realistic?? or both?? will be working on the g tube appt set for consult next monday , then to the ethics committee ,then a surgical consult--- long process.... also the speech therapist is going the extra mile gonna work on dans eating a little and she things he has something called persephany ( or somethin but like that) basically as i have questioned dan gets stuck in an emotion like a old record... we know he does this with words like spoon and elizabeth so the emotional aspect can also have it happen.. so i need to figure out a way to "jolt" him out of the emotion -- the seizure did it this last time or the hospital stay but soon we will go back to the refusals...