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Hi,

No he is not and has never been on any type of machine. He is a stubborn man who has fought this through physical therapy, vitamins, noni juice, and rilutek, zanaflex, baclofen, quinine and up until a year ago he used creatine powder but it wasnt doing anything. Our family and church friends continue to pray, that is the most powerful medicine he has. He refuses anything of that nature bi-pap, feeding tube, vent, anything. He is a DNR. He only takes aleve for pain.

Donna - WV
 
Wow...that is amazing to me. Both my father and my sister passed on around 3 years after becoming symptomatic of ALS. My brother is deteriorating quickly and I hate to say it but I don't think he will be much different from them.

That is great that all those things are working for your husband. That is a long time to fight this disease. Prayers truly are powerful.

I admire you and your husband for sustaining such resilience and courage.

Mary Jo
 
where did my compassion go?

My fuse is very short this AM. I've been up since 0330 to assist my brother and I had a very rough 48 hours. I hate to be lied to and for the 3rd time in 24 hours, my brother lied to me and I just went into a tirade. I know it sounds horrible to all of you loving PALS and CALS, but each day seems to bring about more and more reasons why I have nicknamed my brother SIR DIVA. You just wouldn't believe how he expects others to put out for him and how he manipulates. He states he wants respect from me and yet each day I have to ask him if I'm supposed to respect him for THAT? Remember, he is a perfect stranger to me...we are blood, but that is all. He left home when I was 10 and I maybe have spent a week of my life in the last 34 years with him. Our relationship is purely only existing because he was forced by this disease and he had no one else to turn to. He never came to my mother's funeral and he didn't even know my sis had died in 2000 of ALS.

I hate that my fuse is short, my blood pressure is high for the first time in my 44 years of life and that I feel so broken by all of the disagreements that take place. He has no compassion for others and this is why I nicknamed him Sir Diva...example: newspaper not delivered Sunday during a zero visibility blizzard and he demanded I call and demand they deliver it. I refused and he threw a tantrum. I went into a tirade of how I wasn't going to have somebody risk their life and limb for your damn paper. When I asked the question: Don't you care that they might get into an accident? He said no. I then went off about how they may have children or whatever and you just don't care. I just don't respect him because this is the exact type of behaviors I have been experiencing since he came into my life in July of this year. Now this is an accomplished man...22 year veteran, special forces, has a history degree from OSU and won a summer scholarship to Oxford in England, a pilot, a truck driver and a law degree. I know people who are complete drunks and have nothing that I have more respect for. Why? Because they care for others and have compassion. I just don't see any sincere concern and hardly any insincere concern for others whatsoever. I see a calculative, conniving and very selfish human being with ALS.

It makes me feel so cold to feel this way toward my brother. I don't hold grudges at all and yet, just as soon as I try to forgive for something, something else gets thrown in the pile. God commands that we forgive others so we may be forgiven also. I need God to give me that ability. So please say a prayer to give me patience, understanding and the ability to forgive with compassion so I may be a conduit of peace. thank you!
 
My rather blunt point of view

Screw compassion, respect is a two way street. I am at a stage where if you saw me on the street you wouldn't know anything is wrong. My hands and arms are weak but functional. I need help with little things like opening those damn bags inside the cereal boxes or Ziplock bags in general and jars etc. If I get something I can't do I take to my wife or one of the girls, not call them to me, and say thank you when they're done. That is just common courtesy. In my eyes terminal diagnosis or not if you want respect and courtesy it must first be given.

As you said in your earlier posts he walked away years ago. You've taken him in as a kindness not an obligation. If he is unable to show you the respect and appreciation you deserve for that gesture I would simply explain that he is more than welcome to get by on his own somewhere else or in an assisted living facility.

I don't care if he has ALS or not if he is unable to show you the respect you deserve in your own home (forgive the language) kick his ass to the curb!
 
I agree, Jeff. I've said it before: just because I am sick it does not give me the right to be a jerk! Time to detach. It is possible to detach with love and compassion, and I do not believe that God or any higher power wants us to become victims of our own compassion. JMO.
 
Hi Hearts and Thoughts -

This is a really bad situation. I care for a wonderful PALS - my best friend. I, like you, did not HAVE to do this. It is hard enough to live this life 24 hours a day even though she is a true hero. I cannot imagine your bearing up under this much longer.

Please heed my advice - I am a psychologist. It is time to end this situation. You are also at risk for contracting this familial ALS, the stress could be a killer in your life.

Send your brother to a facility. You can still be there for him if you want to be. There is nothing you can do to make him a diferent person. This situation will only get worse.

I am terribly concerned for your health - please end this very destructive relationship as soon as you can. Beth
 
I agree with Jeff and Cindi. Enough is enough. I know what it is like being told by family members how I should act because I am a Christian toward a vicious, verbally abusive grandfather, who had been physically abusive to his children (my dad included). There was never any tough love and their attitude enabled him to continue his cruel behavior. He never changed and never apologized to anyone. I finally made up my mind in my 30's to remove myself from any situation that included him, and my mom continously begged me to visit him when he was nearing the end of his life, which I only did once in the last few months. She kept telling me I needed to forgive and forget, but I had forgiven, I just refused to subject myself (and my children) to that abuse any longer. No one had ever defended me or protected me from him. My parents thought that it was the Christian thing to be kind to an evil person and try to win his heart over to Christ. But what they did was subject their children to verbal abuse and watching others being verbally abused. I had to protect myself and my children.

I am not yet in the position that your brother is in, but as someone who will most likely be there someday, I hope any friend or family member will remove himself from the situation if I ever became abusive or cruel.
 
Well, you all are on the same page. I am also. Things are improving soon with regards to me taking back my life. We are interviewing caregivers for my brother now. We are awaiting approval for some home health aide service and I hope to be working before the end of this month. I've been told that in order to get my brother out, I have to evict him and I am currently under his thumb financially. But, I've been offered assistance by family members if needed. I just am not ready to go the eviction route. We have good days and bad.

One thing I haven't learned enough is to not let my brother's obstinance and selfishness control my moods. I think when I get an outside job and there are others consistently taking care of my brother, I will become more emotionally stable. Venting on this forum was very helpful. It takes alot of the guilt away to know that PALS don't even think I should take it.
 
He is angry, bitter, mad at the world, he wants to make someone hurt like he is hurting right now. Not even showing up for his own Mother's funeral makes me think there may be some other issues he has as well. Doesn't excuse it, but I can almost bet this is why he is acting out. You should know that stress is not good for ALS. It only causes the disease to get worse faster. And, this is most certainly not good for you. If I am understanding what I've been reading is that this runs in your family which puts you at a high risk. You need to take care of yourself and find other means for your brothers living arrangements. He will keep you jumping as long as you jump. Believe me, I know.

My prayers are with you,
Donna - WV
 
You say your brother is a Veteran? I am of the same opinion as others. Take him to the VA hospital and let them deal with him. I can't imagine that they wouldn't take him. Especially if he was in their emergency room. You do not have to take that kind of abuse. The VA has social workers who will also help find him a place to live. I've dealt with the local hospital for the last five years for my father-in-law with dementia and they were great. Visiting days were very pleasant and I could walk away when I was finished.

God loves you.

Sharonca
 
I am new to caregiving. My wife of 32 years was diagnosed with ALS last Sepember. My emotions have been on the ragged edge ever since. I know that the worst part is still ahead. But I have already had some very frightening thoughts. You are not a bad person for the thoughts and emotions you are experiencing. Rather, we ALL are the brightest of angels who have simply been given the greatest of all challenges, that of being a caregiver. God rewards us in ways that sometimes baffel us. I pray that you don't abandon Him, but rather ask for His help. Please, always make time each day to call on Him. He will never let us down.

Michael S
 
Mary Jo,

I am sorry for everything that you are going through. It sounds like you are making progress toward improving your situation and your relationship with your brother. I agree with what others have said and with the advice that you should look into a facility for your brother.

You seem to be struggling with a conflict between your desire to convert your brother to Christianity and your personal needs (which are very legitimate). He seems to be taking advantage of your wish to help him spiritually, and he will most likely continue to exploit this. You have shown him love far beyond what he has offered in exchange, and this is more than enough. He has free will, and ultimately he is the one who must decide how he wants to live and die. He might come to Christianity at some point, but you cannot blame yourself if he doesn't. You have done your part, and he has to contribute something to his own spiritual development as well.

So...please be kind to yourself and don't focus on the negative feelings that are a natural part of caring for a difficult family member. Allow yourself to have these feelings--don't feel like it's a shortcoming on your part--and then keep going as best as you can. Recognize when you are having a negative feeling, and remind yourself that it is OK. No one is perfect, and God does not expect you to be happy and patient every moment of your life. It's just what we strive for. You have done far more than most people would, and I hope that you will give yourself props for that.

I am glad that you are seeing a counselor. This will help you to work through your conflicted feelings and, I hope, take back control of your life. A caregiver will also help, but a facility for your brother would be even better (and possibly cheaper).

If you are not ready for this option, you might try establishing some ground rules for him to stay in your home. There is a really good website at http://www.loveandlogic.com that offers some strategies on how to handle situations like this. Love and Logic is actually a system for raising children, but it works with adults as well. You might say something like, "I care for you too much to end our relationship, but this situation is not working. If you are going to continue to live here, then I need for you to make these changes. [And then list specific things that you want him to improve on.] Otherwise, we will need to look into a facility for you." Then when he acts out, like the newspaper incident, you could remind him of your discussion. You are giving him a choice--he can live with you *if* he is respectful of you and others, or he can choose to live elsewhere if he cannot honor your needs. This takes the pressure off of you. It becomes his choice, but you will also be protecting yourself from his emotional abuse.

But the bottom line is that you should acknowledge the very generous things that you have done for him, and don't feel like you are falling short when he has taken advantage of you. I know that you are also concerned about his spirituality, but you really have done your part. As I said, he has free will, and you are not a failure if he chooses to reject the love that you have shown him.
 
Donna

Tim say's a Big Hello to WV. He misses it soooooo much. I can't send you a message on your AOL messenger. I don't have AOL. When you can Private Message on the Forum. Send me one. Tim wanted me to ask you a question.


Lorie:-D
 
I sure will, but I think I have to have 50 posts before I can PM. At least thats what I think I read in the rules. You don't have to have AOL account to send an email. I believe I noted my email address on my register.

Hope all is doing well and Happy Valentine's Day!

Donna - WV
 
I sure will, but I think I have to have 50 posts before I can PM. At least thats what I think I read in the rules. You don't have to have AOL account to send an email. I believe I noted my email address on my register.

Hope all is doing well and Happy Valentine's Day!

Donna - WV

LOL! I'm all over the place on here! I can't figure out how to get to private message and how to send one to you. I'll get there eventually I suppose. Takes awhile for this computer stuff to latch on to my brain.

Donna :confused:
 
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