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Quality of life (so to speak) continued w/more info - long

TheFitts
Posts: 8
Joined: Aug 2012

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.

KareGiver
Posts: 289
Joined: Apr 2011

I am so very sorry to read about the challenges everyone in your family faces - especially Bobbie. Dealing with cancer is so difficult, of course, and adding other life issues can make it even more difficult, to say the least. Sending thoughts and prayers to your family for guidance in dealing with a very difficult situation. Take care.

hwt's picture
hwt
Posts: 1816
Joined: Jun 2012

I am sorry you are in the position you are with Bobbie. Cancer and decision making are challenging enough. If Bobbie has given permission for the doctor to speak with you or other family members, it might be best to fill them in and let the professionals guide you and Bobbie. He is fortunate to have a caring family.

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

I don't have any insights to offer. "Quality of life" means different things to different individuals, and it appears as though Bobbie has made his opinions known regarding what represents quality of life to him. He may be challenged in mental and physical ways, but you have made it clear that if he wishes to accomplish something for good or ill, he will accomplish it. It may not be possible to guide him on a path that is not of his own choosing.

Deb

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Sorry, I didn't intend to sound like Yoda.

Deb

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

My father had a lung removed due to cancer. Went back to smoking almost immediately. Cancer returned. He died in a nursing home, without having a cigarette the last six months of his life.

So in the end, I think all you can do is support every "correct" decision Bobbie makes, and be indifferent to his "poor" decisions.

CivilMatt's picture
CivilMatt
Posts: 2802
Joined: May 2012

TheFitts,

It sounds like an up hill battle no matter which way you go. Currently, Bobbie sounds unprepared for treatments. I was prepared, I knew what was coming and it still challenged me both mentally and physically. I admire you and the family members for your compassion and understanding, but as you know it is going to be tough.

Best of luck,

Matt

katenorwood
Posts: 1800
Joined: May 2012

Hello,
I don't know what state you're in but it is a process to get gaurdianship over someone who doesn't want to relinquish it. There are specialized group homes also that specialize in Bobbies conditions. I would continue to support and love him as you obviously are doing. Even saying this depending on the state if a person refuses treatment, there's not alot to be done. Is he working with a social worker, and counsler ? I would definately reach out for the extra help in the community you live in. Addiction, mixed with mental health issues are rough...one feeds off the other. And believe it or not, most times they try to self medicate themselves to make sense of their mental health. I have been dealing with this in my own family for years, until it wears you down so much you don't want to listen to it anymore. Now let's mix cancer in with it. He must be terrified. As are all of Bobbies family members. My prayers of strenghth and courage go out to you all. If you show him continued support and love, no matter the outcome you've done your jobs. Katie

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