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swmn

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Hi alll,
I've been trying to support my good friend and his wife as he deteriorates w/ ALS. I make meals and offer other support so he can continue working, without too much extra strain on his wife who also works. He was Dx about 15 mo. ago. He is still working -( an Awsome high school principal), though I am concerned he goes home with pain and exhaustion many nights. I believe that by continuing to contribute to education, he is able to compartmentalize his disease and it is slowing the progression due to his state of mind... It seems to me he has plateau'd a bit... I want nothing but for him to stay, ( I am a teacher in his building who has valued his contibutions, so much that I can't imagine our school's continued success w/o his leadership to push it). Although I pray every night for his strength, I am starting to dream less than happy dreams regarding his ALS progression. Can CALS get so concerned / involved that we internalize too much? any suggestions how I can stay involved w /o falling apart?:cry:
 

CindyM

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Hello- I read your post with interest. You raise some valuable questions, and I am sure some of our experienced CALS will jump in with empathy and a few coping tips. I can only say that, for me, just the prospect of having ALS is such a life-changing event that it is hard not to get caught up in all of the changes, decisions, adjustments, and so forth. In my family we learned long ago that when somebody is terribly ill we had to make an effort not to let it consume us. We set aside a couple of hours a day to focus on just everyday stuff. During that time, we would not let ourselves think or talk about the illness.

That was a useful skill for me to learn. At the time, I did not know that 30 years later I would have to apply it to my own situation. But you might give it a try. tell ourself you will only think about your friend and his family during certain points of the day. Then when worries intrude, remind yourself that it is not time to think about him right now. The message you give yourself is that you are still a good friend, you still care, and you will return to focusing on his needs during the time you set aside for that purpose.

It works the other way, too. My family knows that I think about MND and ALS during certain times of the day and during that time they should not expect me to answer questions about what's for dinner or what movie will we watch.

I hope this helps. Please keep in touch and let us know how things are going. Cindy
 

nspoc

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Cindy -

That is some of the most useful, practical information, I have ever heard. Even though I have spent a good part of my life counseling others, I have not heard it put as well as you did. Thank you so much. I hope other CALS (such as me) take your advice to heart.

Beth
 

swmn

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Thanks

I think you are quite right. thanks for your recommendation of compartmentalizing the time I spend addressing the needs of my friends. There just seems to be so much I can help them both with. Thank you for your wisdom, you all are in my prayers.
 

l2c

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Cindy, I know that some of the things which keep me going (CALS for DH) are the little things of life....watching something we both like on TV...going on a little driving outing.....talking to one of the grandkids...sometimes, at least for a little while, one forgets that ALS is an ever present horror.....
 

CindyM

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Gee, everybody! You make me blush with such praise. :oops: Glad that, every once and awhile, something sensible comes out of my mouth.
 

califsand

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ha Cindy, it's true though! Your suggestion is a great one and if more of us could do that, we would probably cope better. I wish that I had that opportunity but being the primary person who cares for my Dad (yes, even after he's moved) I am constantly asked about him by my WAY too large family! Maybe I will send them part of what you said as a suggestion... ;)
 

CindyM

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Well, LOL, as long as I am dispensing advice here's another thing I wish I had not done. When folks asked about my Mom I would give them an update. Bad move. That let them feel as if they were involved on some level but in reality it left me doing all the work. I should have said, "She was happy the last time I went there. How did you find her to be on your last visit?" :-D
 
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