Topic: How do you deal with encepholapathy

I first came on this forum a few weeks ago.  My husband was diagnosed in early Feb 2007 with metatastic cc.  A liver resection was not an option, but an ERCP was done to place stents to drain the bilirubin.  He has had two rounds of chemo (once a week for six weeks, followed by a two week rest).  At the end of each round, we were tild there was no change.  He had one treatment of a third round and then he started showing a lot of jaundice again and experiencing a lot of pain in his abdomen, his feet, legs and abdomen also started to show considerable swelling.  The doctor stopped the chemo and ordered a ct scan and then another ERCP where they discovered that either the tumor had filled in the stent or had crushed it.  Either way they told us there was nothing more that could be done, so my husband is now under hospice care.  Throughout the past few months my husband, who has always been pretty mild, kind, loving, laidback has had quite a personality change.  He says and does hurtful things and is very difficult to deal with.  My children and I know it is the liver toxins which cause swelling in the brain, but it is still very hard to deal with on an ongoung basis because he is often very irrational and does some crazy things.  I am at my wits end in hiw to handle all the.  Everyone has bent over backwards to accommadate his every whim, but it is getting out of hand and if things aren't done just to his liking, he causes some pretty hurt feelings.  We keep telling ourselves it is the sickness not him but it is very hard.  Has anyone else experienced this?
He tells me he is at peace with dying.  Having always been a man of great faith, I am sure that in a spirityal sense he is, but he is fighting it for all he is worth.  He is like the energizer bunny with umpteen projects that he says he has to get done and it is like he is driven even though he is unable to do any of it himself.  Besides our family, peo[le from our church and the boy scouts have helped tremondously.  How do we get him to stop and smell the roses and enjoy some quality time with us.  There is not much left and our six childtrn (who live all aver the country) were all here for the 4th of July week and while we had a little quality time on the 4th itself, for the mpst part, my husband acted as a drill sargeant which is titally out of character for him.  I don't want our children and grandchildren left with bad memories.  We have always been a bery close knit family and were all devasted when we learned of his cancer.  We all love him deeply and to be honest with you the thought has crossed all of our minds that like the old story of the reason why teenagers are difficult is that if they always stayed as sweet and lovable as when they were very young, we would never want them to leave home so this is Gos's way to make it more acceptable.  Is this what is happening with our family?  Is God prparing us so that we can more readily let him go?  My heart if very heavy. the hospice nurse tells us that if signs and symptoms alone were the ony indicator, he only has a few days left, but will piays an important role too.  I thank you for letting me ramble.

LD

Re: How do you deal with encepholapathy

Hi LD,

My husband Ken(46) was diagnosed in May of 2005 and passed away Dec 27th 2007.  It was a very trying ordeal on the whole family -liver resection, chemo , therasphere and then hospice.  I am an RN and one of the doctors I work with said that hepatic encephalopathy was not a "bad way to go."  They usually have very little pain but the toxins do play tricks on their minds.  The best way for my family to deal with Ken's psyche was to just agree with everything he wanted or said and let him do as he wanted as long as safety was not a concern.  Ken was very much a huge source of laughter in our life and so some of the strange things he said and did were keeping us laughing.  I should have documented all of the funny things he said.  We miss him dearly and it is such a hard time but I hope my experience can help you.

Sincerely,
Terri