Saturday, April 26, 2008

How to deal with this?

I have a cousin who has become disabled due to surgery from a brain tumor. He is alive two years after diagnosis of the most deadly of brain cancers. According to statistics, he should be dead.

Even though he can now stand and is beginning to converse a bit better, he also rages and curses at his wife. He is demanding and uncooperative. He also cries and is scared. He is now feeling depressed. He has threatened to give up, saying that he won't get better.

Now his wife is feeling despondent too. She has devoted the last two years to him. And when I write "devoted" I mean it literally. She has taken him to appointments, fed him, changed his diapers, given him medication and so on. But what is most telling is that she has given up herself for him. He is her universe. She said that last night he was yelling at her to feed him at 1:30 AM when he had already had dinner at 8 PM. She has gotten about 3 hours of sleep a night for the last week.

Maybe it is just the brain tumor causing this behavior. But maybe this is also about his self-pity and manipulations around that. It all sounds too familiar to me: The idea of sacrificing oneself for another who doesn't appreciate what is being done for them. It seems like enabling to me. And when I last visited them, I wanted to tell her to take some time for herself. And today, she finally admitted that she can't take the situation anymore. She said that she thought about crawling in bed with him and just dying too.

So I asked her if she had considered that by doing everything for him, he might not need to cooperate or do anything to help himself. And had she considered that by taking care of herself and getting some rest, the whole situation might be better. H.A.L.T.

I have never had to take care of anyone to this extent so I may be off base here. But it seems to have similarities to the alcoholic relationship in which one person enables the sickness of another by overdoing. If anyone has any experience on dealing with individuals with disabilities, please post some thoughts. Sometimes I think that I see everything through the 12 steps and perhaps they don't apply in this situation.


  1. I took care of my mother for a year, day and night. It was a labor of love to be sure but toward the end when she became paranoid and beligerent I was urged by hospice to "just go on living" which meant leaving for a while to watch my kids play basket ball or just get out. I was not in the program then. It was hard. I wonder if my mother, whom I loved dearly, had hung on longer than a year, what the dynamic might have become. I also wonder how much better at taking care of her I might have been if I had been in recovery. I would not have thought that I had all the answers, I might have been more able to talk with her about her mortality instead of avoiding the subject. Having been in the program for 4 years now I can't imagine a situation where the 12 steps would not apply. This perfect spiritual blue print is just that, perfect. It has become my road map that I use when I take the wrong turn and little by little, one day at a time, my compass.

  2. oh boy. what a situation... there is, however, a difference between care-taking and being someone's doormat. i think she needs to realise this. and so does he.

  3. I have taken care of my son who has a traumatic brain injury.

    I believe the program applies. I think good boundaries are always appropriate. I become unwilling to do things that he can do for himself. One doesn't need to accept unacceptable behavior. No must mean no. Its called tough love too.

  4. I do not know, Syd. It is probably the brain tumor causing the behavior unless of course he was like this before the surgery. As far as his wife, she needs help either by a homecare program and/or hospice. Even a saint could not deal with this situation day and night. She will become depressed and feel hopeless. Someone needs to help her. My mother-in-law died a year ago from lung cancer and even with hospice around the clock it was difficult for my father-in-law. Family members took turns at the end to help as much as possible. They lived in Florida and the rest of us live in other states. Sometimes modern medicine is not such a good thing. Maybe you could encourage her to look into some programs. At this point, she may not even be thinking straight.She needs support.

  5. This is where I am lucky to be an alcoholic. I am FAR too selfish to ever find myself in a similar situation. I think the wife needs to do some serious self-care. I wonder when she last went out for lunch or bought a new pair of shoes. Sounds like silly stuff, but it feeds a person's soul. I don't blame her for wanting to quit. She needs a break!

  6. I am so not experienced with healthy relationships. I was much the caretaker all my childhood.

    I would bet the resentments are building up if she hasn't already completely lost herself to him. I would also bet she will break if she doesn't take one. Sounds to me they both need counseling...quick!

  7. It's a traumatic situation and although I think 12 step programs definitely help with behavior modification, sometimes gold ole' antidepressants are needed. She has a long road ahead of her. Even on anti-depressants you have to work on the depression but it really helps pull you out of the pit. She may only need them for 6 months. I say worth a try...give it a few months and if it doesn't help, try another type or just go off of them (slowly). Usually by the time two months are up, depressed people realize how much they are helping and chose to stay on them.

  8. When I was really needy, many people helped me, and I was encouraged to let many people help me. To expect and rely on 1 person, is too much and is not the best method. Hindsight is wonderful.

    When I help others, I can get into a "I am the light the way" of thinking because I want to help, really want to help. Helping and also letting others help at the same time.. in fellowship, asking others if they want to help you too. There may be others that want to help in small chunks but not all the time. Open the door for them too. And be willing to step back, and let others, even if it appears to be interuppting your "designated time"

    I dunno if it makes sense, its all I could find from my experience today.

    Good luck, and God Bless.. Syd you are a lovely guy!!

  9. Sounds like the behavior is more a result of the tumor than any enabling behavior but she really needs to get help. I have been taking care of my Mom now for 5 years...(she didn't die but she is permanantly disabled, Korsakoff's Syndrome) and they have caregivers support groups, hospice, respite care, probably even groups for those in her specific situation. Occupational therapy would help detemine what he could indeed do for himself. Even you could help by giving her an afternoon off and sitting with him so she could go to a spa or out to lunch with a friend. I hope she gets the support because getting burned out will not help him so if she is really devoted to him, she needs to care for herself first so she can give him the love that I am sure he needs.

  10. I have no idea except, I know this...
    If she doesn't take care of herself, she can't take care of him.

  11. carers need to join a carers support groups otherwise they go a bit mad. they are all over the place. im sure there is one near her..

  12. I just stumbled upon this today, I realize this was an old post. However for the past four hours I have been reading though all of these post. This one struck me as being very close to home in a way. It is about my Alcoholic/addict husband. He went though this phase in his dependency where he was in really bad shape he was on a cocktail of pills that he washed down with lots beer and the occasional moonshine. He became very withdrawn, and very demanding on me to meet his every need. He would lay in our bed from the time he got home from work until he went back to work. He would pack beer and pills for lunch, then he would return home to go back to bed. On the weekends he would lay in bed from Friday evening until Monday morning. He would yell for me to bring him EVERYTHING bring me a beer, bring me the remote, bring me something to eat, bring me my dinner, bring me coffee, he would call me from his cell phone on the house phone and tell me to bring him stuff. His needs interfered with my life, and our children’s lives. He eventually lost his job and laid in the bed for about a year ( I really don't know how he did not get bed scores) He got up to go the bathroom!. It was so bad if someone came to visit him they had to come to our bedroom to visit. It was like he was on his death bed, He would call his grown son (from previous marriage) to come visit at 6 a.m. and he would have him come on in the house and come to the bedroom with no regard to the fact that the kids and I were sleeping. It was all about the fact that his son was bringing more pills to him. It had became so bad that when our daughter had to have emergency surgery (appendix) I had to take both kids to the hospital with me because he could not take care of himself I knew he could not take care of the kids. When I found out they were admitting our daughter at the time 10 years old our son was 8 . I had called him to tell him they were admitting her for emergency surgery and I really needed him to bring me some things, like first of all I needed a change of clothes our daughter had thrown up all over me in the E.R. and he told me to get the nurses to get me some scrubs. This really hurt after all of the care I had done for him. Our daughter was in the hospital for three days and had to have a full incision due to her small size. The day I brought her home I was trying to get her situated and then I had needed to run to my work to get the FMLA papers they needed me to complete. He started yelling for my daughter (that was just home from having a full on surgery) to get him something to eat or drink or whatever. I nearly lost my mind, not to mention that if I left the house I had to lock up my daughters pain meds to keep him from stealing them. It was like he was so disabled and he was so mean and never understood that I had work, kids, and a house to take care of on top of having to take care of him. My children lost out on the chance to play ball or cheerleading because every time I would try he would get upset and I had no way of trusting him to take them when I could not due to work. My husband and I have been married for 17 years now and he has been on and off the wagon, he had pulled the wagon carried the wagon and pushed the wagon. He is symptomatic of a dry drunk when he is sober he is addicted to porn and treats me like a prostitute he picked up off the street. His mind is gone from the alcohol he can no longer be trusted to make any adult decisions. He has a really good job and he manages to function at work with his breakfast of antidepressant pills but he comes home and drinks as soon as he walks in the door. Our daughter is now 16 and working. She has had to work her schedule around my schedule because even though he is home way before she has to go to work he can't be trusted to not drink and drive with our daughter.


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