Suzanne,

My heart goes out to you. I find it difficult to even imagine what this is like for you right now. I wish I could provide what you want to know. I can't, but I have had some experience with this situation, and I will share what I can.

Background: I am a Clinical Psychologist by profession. I have been disabled due to chronic pain secondary to neuropathy for the past few years. While I am not able to practice, I had a fairly lengthy career during which I worked in quite a few different capacities. Currently, I am trying to write a little and have plans for a book - hoping I will eventually be able to manage that.

Some years back, actually about 10 I believe, I had a patient who had severe liver disease. He had contracted hepatitis B from a blood transfusion and was having significant medical problems. He was on a list for a transplant, but was not high enough on the list. He was told that it was not likely there would be a replacement for him if he neared death soon.

When I was first seeing him, it was an outpatient basis. He able to come to my office. But he did continue to get worse, and I began seeing him at his home - sometimes with his wife.

Finally he got so sick that he had to be hospitalized. While he still had some hope of a miracle transplant, he faced an increasing likelihood that he was going to die. He continued to move towards acceptance of that as he got weaker and weaker.

It was truly just a hellish nightmare for all of us around him, including me. But you know something - it was not exactly that way for my patient. Yes, there were times of huge distress with all the upset that you might imagine. But those times were the exception. Most of the time, he just wanted to be with those people who meant the most to him.

When he had the strength, he wanted to talk. It was clear that towards the end he had accepted death. I don't mean that he just resigned himself to it, but that he had made some sort of peace, uneasy at times, with not only death, but also life. He certainly wasn't putting on a good face - he was beyond that or even the ability to do that.

One thing that emerged was clear to me. I knew very strongly that he needed to be told that it was ok for him to die. That it was ok if he went because nobody needed him to be there for them - that this was just about him and that no one else's needs would be in the way.

His wife was also able to sense this. We talked about it, and she was able to spend some time alone with him to tell him how much she loved him and to say goodbye. After their talk, you could see a dramatic change in him. He had this peaceful, almost serene quality, perhaps even a kind of glow about him.

It was not that he wanted to die or that anybody else wanted him to die. He still knew that everybody wanted him to live, if possible, and get that dang transplant. There were still some difficult moments in the next 2-3 days before he passed on, but he had found as much closure to his life and death as he wanted or needed.

It sounds as if you are too much alone in this right now. I would hope you would be able to talk to his doctor - perhaps just you and his doc. You are entitled to get more information as to his condition and other relevant things. I think that you would also want to talk to religious and or spiritual people - if there any who know him, that would be ideal. But even if not, it could be very, very helpful - to you as well as to him.

I hope that you have positive relationships with members of his family. When everyone, or perhaps just a few, whatever is best, gets together and sits down, some things often get clearer.

There also might be some services available in your community that can be of use. Maybe they arrange for help with routine things that need to be done, or help you look into hospice if that is a possibility, or maybe other things.

And I just have to throw out the old cliche - you must take care of yourself if you are going to be there for him and be there in the way you need to be for yourself. I would suggest that talking to a therapist or other counselor would be very, very helpful right now.

I will hold a good thought for you both,

rfinney