Sep 16, 2012 - 9:19 pm
Thank you to everyone for your comments in my previous post on whether quality of life is or should be an option. This is long and I am sorry for that :(
I also appreciate everyone's prayers for healing and our feeling overwhelmed. The overwhelmed-ness comes from deciding what to do. I'm not worried about the extra time and care that will be required during treatmetn, there are steps that need to be done and that is what I'll do.
Some people indicated that there is no quality of life, this is where I can use everyone's help so here are more details.
Bobbie, 52, has a slight mental handicapped and is an alocholic. None of the family has guardianship over him to make his decisions, we never felt the need. One thing to keep in mind is Bobbie doesn't share information, he will rarely tell you if something is bother him, if he doesn't feel good, etc.
Bobbie went in for a trech, chemo port and feeding tube, came out a week later with C-dff and went to a nursing home for one week before coming home. His orders when he came home were liquid diet and no drinking. We can't watch him 24 hours a day. The first day (Friday) he was home, he waited until we were asleep and started eating chicken on the bone. Saturday we found bags of doritos in his bedroom and Saturday night he stole beer (which we now keep locked in another room.) Monday morning shorlty I left for work, my husband came down stairs and found his brother bundled up for his "walk" that is when he goes up to the busy street to pan handle for money for alcohol and dropped cigarettes that still have life in them. He was surprised when he saw my husband and admitted he thought he had left with me and what he was going to do. THEN he told us he had been throwing up for two days, so basically since he started sneaking solid foods, he had been throwing up.
We went to Chemo training on Monday and on the way there we noticed he had a spot of blood on his shirt, he said he 'pushed' his g-tube in further because it looked like it was falling out. In chemo training she talked about the drugs he would get including all the side affects that 'could' happen and that one of them had kidney failure as a 'possible' outcome and that it was more prominent in african americans. She also spoke to Bobbie specifically about drinking - saying that alcohol made chemo less affective. (to me that sounded like you can go through chemo, but if you choose to drink - you are taking chemo just to feel bad because it isn't going to make you better). PLEASE correct me on anything I am saying that I have wrong - I am not going to know different until someone tells me.
From chemo training we went to the ER, and they admitted bobbie for g-tube evaluation and low sodium and potassium (if he can't get alochol, he drinks water non stop - even as far as to go to neighbors houses and use the hose), we have explained he can't do that and keep plenty of juices on hand and encourage him to drink those, but he doesn't. So if they hadn't admitted him, he probably would have had low sodium seziures shortly, which has happened before.
Day two in the hospital, he called my husband and asked if he could have some beer when he got home. We went up to the hospital and talked to him about guardianship, helping him make decisions (we were considering a 24 hour facility as maybe the only option where he could be watched 24/7 and forced to comply.) He said absolutely not he did not want anyone to make his decisions for him.
Forward one week, to yesterday. My husband and I and Bobbie's sister went to see him. He has had no treatment yet, dropped further to 120 lbs., doesn't want to talk to us or anyone else, (understandable - i would be mad and angry going through this too.) But he said to us all -- I do not want treatment. I know there are possibl side affects and i can't drink with treatment for it to work. I want to go home and live what life I have left my way.
We picked him up today.
Anything else anyone can add is appreciated. I don't take offense at other people's advice and opinions, it is all important to hear. We had already started talking to people about a court order for guardianship, but have been told it would take some time, but more imporant are struggling with if he doesn't want to go to a nursing home do we risk putting someone in there if the odds (and I know that odds don't always = success/failure) aren't good knowning that they could go through all this treatment, feeling like crap, AND be away from where they are comfortable and family and then not make it (I do know the alternative). We have NO idea what to expect if he does not go through treatment. Up until yesterday we had expected him to start chemo as soon as he was discharged.