Old 06-27-2016, 09:39 PM #16 (permalink)
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Default Re: Refusing any help......giving up.

Tripete as usual your words have brought tears to my eyes. You are a very special man Sir. Besty your advice really hit home with me.

This disease makes everyone take a stand in one way or another and all we can do is respect our PALS decisions. I am the first to admit that I don't understand my PALS most of the time but in the big picture does it matter if we understand. We have to support their decisions while trying to maintain our own health and sanity.

Jylnn, I can offer you and your family my thoughts and pray that you have time to show your brother what he means to you and his children. My husband has always been a loner and has very little to say to me or anyone else. I understand the deep sorrow you are feeling right now. My heart is with you. There are no easy answers and just like the progression and symptoms are so different, so is how we all react.
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Old 06-28-2016, 06:27 AM #17 (permalink)
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Default Re: Refusing any help......giving up.

"Their mother lives with a man now and somehow my brother feels as though he needs to "cut them loose" so they can get on with their lives as a family."

I went through these emotions when I was divorced from my first wife, and felt that maybe just staying away from my 4 year old daughter would give her a better chance at a normal life. I did however try and stay in her life. At 14 she decided that she no longer wanted to visit dad. So I effectively lost her. Now she is 22 and I miss her terribly. I can never make up the time we missed and due to ALS I do not have time now to change things and help her grow in any meaningful ways.

Please tell your brother that as one who has made many mistakes in life, DO NOT let them go. It is not to their benefit at all. We so often try to take the easy road for ourselves and we dress up our decisions as "concern" for others. But when it comes down to it we are just trying to do what is easiest for us. This will effect these kids for the remainder of their lives, don't distance yourself from them but do the opposite, get closer, and show them how much dad loves and cares for them. Help them for how many days, weeks, months, or years you have left to become the best adults they can be.
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Old 06-28-2016, 09:27 AM #18 (permalink)
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Default Re: Refusing any help......giving up.

Oh Pete,
That is - YOU ARE - so beautiful!

Sherry
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Old 06-28-2016, 10:21 PM #19 (permalink)
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Default Re: Refusing any help......giving up.

Pete, as usual you are spot on. Children carry the loss or unacceptance from their fathers for a life time. My dad exited my life as a very young child and the pain stayed with me for a very long time. I do believe it's only to late to free the child of this pain after you are gone.
Bad memories or lack of memories can be replaced with god ones even if it is only for a short time.

I have made sure Steve understands that as he did the same thing you did Pete thinking it was best for his kids. Well, it wasn't but he is repairing that a little. I was and am very persistent with him because I know their pain all to well. Pete do what you can and make the best of the time you have left.

jlynne, Talk to your brother and stay on him. His kids will do much better if they have good memories and are a part of his journey.
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Old 06-29-2016, 04:22 PM #20 (permalink)
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Default Re: Refusing any help......giving up.

I'm with you Laurie. Absolutely no thought of involuntary evaluation or treatment. It's his decision all the way. I did however give my opinion about his kids and his recent lack of involvement. I can't imagine how not seeing each other would be good for any of them. Time is precious. He does by the way smoke cannibus but not MM. That's all he'll do. He needed it initially to make him eat so he can try to maintain his weight. He's a pretty thin guy to begin with. I'm not sure if it's working at all for him mentally. So in a nut shell, he still hasn't seen his kids (2 weeks now), still sad as hell and getting weaker by the moment. Hopefully by the time I check back here he will at least have seen the kids. We can only hope. Happy 4th to all of you lovely people.
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Old 07-04-2016, 05:25 AM #21 (permalink)
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Default Re: Refusing any help......giving up.

Pete, as I sit here this 4th of July reading your words I am humbled. Just reading your thought to myself and others brings tears to my eyes. You are truly a very special man. Your thoughts mean the world to me as it gives me some perspective on how my brother may be feeling. I only wish he had the attitude that you have. I just want to say thank you Pete for doing what you do. Helping others is very noble. Thank you!
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Old 07-05-2016, 06:15 PM #22 (permalink)
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Default Re: Refusing any help......giving up.

I'll try to weigh in here but not with advice maybe some personal experience.
This nightmare is powerful! It's not like we all ain't gonna die ,we all understand this however when I deteriorate fast or slow each time I drop off a plateau more changes,more acceptance are needed. I don't always do this with grace! All emotions come into play, fear, sorrow, anger,piety, withdrawal,the $hit between my ears is unreal at times.
Usually as some time passes I get a hold of things and a new attitude appears. A belief in a higher power helps pull me through but the thoughts of why bother are always there.
As pals we each find our way. We are not alone in this but we are alone at the point of moving on to the unknown .
I try not to think about what's gonna happen and try to live in the moment thou not that successful most times.
It is a process and not an event for me. I try to give love to all I meet family,friends,enemies. This is it for me got to make the best of it. Good thread here and good night all love ya chally
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