Time For A New Discussion Re: End of Life Choices

LD,

I am so sorry for what you went through, it is one thing to watch a loved one slip away and quite another to feel you don’t even recognize the person you love.

My mother suffered some hepatic encephalopathy as well but was not as agitated. I read on here later that lactulose can help but the doctors never suggested it and our understanding was there was nothing that could be done. Thankfully, after her first bout with this symptom we did get her “back” for a while and we knew we had to make the most of the rest of our time with her and tell her things while she was lucid.

Patty

LD how incredibly difficult for you.I sounds as if you did amazingly well.I think those symptoms are the most difficult of all to deal with.You just have to try to remember him as he was.A lot of people do experience that confusion to some extent but it sounds as if it was a huge problem for your husband.It really is a sign that he was very unwell.
Of course you could only give him liquids if the food caused extreme pain,you did not starve him to death,the cancer did that.You did your very best under difficult circumstances but perhaps you need some counselling to talk things through a bit Janet

Though I am opposed to considering suicide for a person with cc, I think more discussion and information for care givers would be helpful as far as what to expect might happen. It appears that this horrible disease affects everyone a little differently. I come to this discussion board often and it has helped me in a lot of ways, but I have never heard anyone discuss how this disease can affect the mind.
My husband went from a very mild mannered, loving husband and father to a very hard to deal with patient. He was demanding and said very cruel things to all of us. It was a nightmare of the worst kind and though I know that his mind was affected by toxins (as explained by a Doctor) in his brain, it is still very dificult for me even though he has been gone 2 1/2 years. Nothing was ever the same after his first severe attack of pain that sent him to emergency where a prelimary diagnosis of pancreatic cancer was made which then after more testing was determined, in reality, to be bile duct cancer. He was an extremely difficult pattient, especially towards the end. He litterally starved to death and because solid food of any kind caused him horrendous pain, I was told to only give him liquids. This still haunts me, did I starve him to death? As he grew weaker, he refused to use a walker even though he would fall. When he absolutely could not hold himself ip, he fought us constantly to get out of bed and was always trying to climb over the rails. Right up until he died, he fought to get up, the last three days of his life, he was in a semi-coma, he would lay guietly for 2-3 hours and then he would fight to get out of bed for about 10 minutes and then he would lapse back into a coma and this repeated itself 24 hours a day for three days. He was under hospice care and we had the morphine to give him, which we did. When it was all over, I felt so guilty at the relief I felt.
We had been married nearly 45 years and I loved him dearly, but I am plagued by my memories of our final year together. It was very much a nightmare.

I am sorry to be so negative, but I would not wish the experience I had on my worst enemy.

Your board id a good thing, keep up the good work.

I cannot imagine there being any legal implications just from having this discussion here. If there were, then PBS should have gotten into trouble for broadcasting “The Suicide Tourist” on an episode of Frontline.

http://www.pbs.org/wgbh/pages/frontline/suicidetourist/

Irene,

Your post brought back a flood of emotions that began with my Mom’s journey with this disease.

I diagnosed my Mom’s illness and from day one when I saw her slides under my microscope, intellectually I knew what we were in for. That said, I was in no way prepared for the emotional or physical journey.

My Mom chose to fight with all her might. She was 77 with stage IV with mets to the lungs at diagnosis so chemo was the only option offered. She elected to fight until the end.

As I approach the first anniversary of her death on April 3, I still wonder and sometimes have second guessed some of the choices made. That said, I now KNOW I would NOT change anything if I was given the opportunity to go back in time.

In the small, still hours of the morning when I sometimes can’t sleep I still remember those last hours of her life. She did not appear to be in pain nor could I see any signs of discomfort. Hospice was with us and had made sure everything was being done to keep her pain free. Do I think that the morphine, scolpomine patch, atropine and lorazapam hastened her death? Yes. Would I do it again? Yes. Am I at peace with the choices made? Yes.

As for discussing the subject on the board, all I can say is that the board to me is a family. I posted here several times the night Mom died. To me there is no topic that can’t be lovingly discussed “within the family”. That said I’m sure there could always be “legal issues” raised. (Can you tell my son is graduating law school in May???)

I have no real answers to this very hard question. I believe we all make choices and have to live with the ramifications of our actions and choices.

Forgive me if I rambled…

Hugs,
Pam

Irenea,
This is actually a topic Hans and I recently discussed between us. Not an easy or pleasnt chat to be sure. However, I would be nervous about having a section on here simply for legal reasons. Perhaps I am just overly cautious, but I would hate the foundation to get in trouble for “encouraging” suicide, I know that is not what you mean, but family members in their grief could read it that way and cause problems.

Kris