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Anyone Ever Been In This Position


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This is a long story but I will try to make it short and get to the point. I have been trying to take care of a relitive for the past 4 years. He was not an invilid until about 6 months ago. During this 3 years, I have been the only family he has known. He does not have a Living Will. We have talked about it in past but he never expressed a preference to me. Last week he was sent to ER. He almost died while I was inroute to hosp. They called me and said he was dropping fast and what did I want them to do. His doctor was calling on the other line for me. I ask given his medical history, was the ventilator the best for him. He said he thought he could come off in 4-5 days.Today makes 6 days.

I have one doctor telling me to seek hospice. His medical doctor tells me he still believes he will come off life support. Here is my question for you caregivers. All of a sudden there are relitives that had all but vanished for these years. Nieces, nephews, and 2 sisters. Oh he told them years ago that he did not want the machine and all that. They are pusing for me to stop treatment for him. I have made his arrangements for him and given him an extra grave vault that I had. None of the relitives stand to gain from his passing, so that is not the deal.

Have any of you been in this position? I am about ready to pack and leave town and head to the mountains and tell the others "there it is, you handle it".

Perhaps if I disapear then Ry won't fine me to bad. Thanks for your input and listening.

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Bruce if Ry fines You I will get it. THis is a sticky situation and I do hope something good comes out of it hopefully. I wish I had advice but don't and wish yout eh best luck in dealing with this problem.

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I don't really have any advice for you either. Since there are no written directives re: this situation, I would think that the hospital would prefer to have the closest relative make medical decisions for him. Are they "on site?"

As for a fine, even Ry can be compassionate!

Muriel

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Hi Bruce,

Sorry to hear about the position you're in.

I would never offer advice on such a thing, but I do think that I know what I would do if I were you.

I think that I would give it at least a few more days to see if things will turn around. If one of your doctor's feel that, that may be the case, I would want to hold off and see what happens at least for a little while.

This is a decision that you are going to have to live with, be cautious, you will not want to live with regrets about this.

As far as dealing with the relatives that have just crawled out of the woodwork. I would ignore their wishes. They have played no role in the care of this relative, they should have no say in what happens now.

Just my opinion. Hope it helps.

I wish you all the best,

Gail

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Ditto what Gail says!

Hang in there. This is a terribly hard position to be in. I am praying for the best and for your strength during this time.

keep us posted.

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bruce,

i don't have experience with this as a caregiver but i can tell you from experience of working in the icu. this type of situation is actually unfortunately not uncommon. there are many times when relatives are in disagreement about end of life treatment. it makes it harder when some of the relatives haven't even been around the whole time and especially when the patient does not have a living will.

in these situations, what we have usually done is to arrange a family meeting with the family at the hospital. it is best to have the family members together while the doctor discusses the situation. you can ask the doctors in the icu to have the social worker arrange this for you.

in addition, i have always stressed to the family members that what it really comes down to is what the patient would want. this is difficult to determine unfortunately because a lot of times patients have not expressed their wishes to their caregivers.

i think your situation also seems difficult if you have conflicting reports from caregivers. i think the reversibility issue of the situation is important as is it is important to ask that doctor if he/she thinks that his qualitiy of life would deteriorate further if he is able to get off the ventilator.

i also think you should think about the past few months and determine if he was happy with his quuality of life. if he is able to come of the ventialator and return to the same quality of life which he was ok with vs coming off the ventilator and returning to the same quality of life which he was not happy with or even having a worse quality of life are all things to consider.

it is best for all family members to give their perspectives and to try to listen to each other. the benefit i have seen from these meetings is that the social worker who is usually present along with the nurse and the doctor can act somewhat as mediatiors.

i hope this helps somewhat. it is a stressful situation and difficult situation.

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Bruce. What an awful position to be in. I like the advice given on the last post. A family meeting with an independent voice. I do think however that if you have been with this person for the past 4 years that you are probably in the best position to understand what their wishes might be. I agree also with giving this a number of more days, to both think about and give it a good last shot. Take care

Sandra

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