Life is changing for us, and it is not for a positive reason

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It is called denial. If he acts like he is not ill, then he won't be. He can do anything, it is just mind over matter. Those doctors are all wrong. If he just ignores it, he can be his old self again. Then, of course, he makes himself worse and he doesn't want to admit it, but he is scared. Instead of sympathy, you are mad. He doesn't get it.
You get mad. You take it personally because you are scared, too. Does he really want to die and leave you? You are scared you will lose him and you are powerless to change that and he won't do anything to help himself. Then, he would have to admit that he is ill.
What a frustrating situation. The disease cannot be ignored. Be strong Deb, he is always going to test the limits, because he doesn't want to die. He is not invincible.There are no do-overs and that is hard to face. I don't know which is harder, dying or watching people die. I have sure done plently of the latter and I feel your pain.
You are his support system, his lifeline, his lover and friend. All you can do is love him while he is here.You cannot change the course of the disease. You know the old prayer, "God grant me the serenity to change what I can, accept what I cannot change and the wisdom to know the difference." or something like that. I am praying for you.
I can go one further than that. I took the truck today.
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So, I stole the truck today and he had forced resting time. He looks much better and ate a burrito. He feels better, I feel better. On the way home tonight I stopped at our brand new grocery store, a Stater Brother's. They had said that it was the largest Stater's in SoCal, so I had to go look.

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I am AMAZED!!!! The deli there is about 5 times the size of your average subway and includes chicken in just about any variety you can think of, they have a candy and fruit bar, make their own tortillas, have a special seafood section, their meat section is a true butcher and included all different kinds of meat in a bunch of different marinades. I mean I was AMAZED!!!!! There is even customer seating!!!!

All the cold cuts and bacon and sausage, etc. is in open and close containers like the frozen food section. It is so beautiful! I can't wait to do my shopping tomorrow now. I just did a quick run through today. WOW!!!
 
So, I stole the truck today and he had forced resting time. He looks much better and ate a burrito. He feels better, I feel better. On the way home tonight I stopped at our brand new grocery store, a Stater Brother's. They had said that it was the largest Stater's in SoCal, so I had to go look.

ep.gif


I am AMAZED!!!! The deli there is about 5 times the size of your average subway and includes chicken in just about any variety you can think of, they have a candy and fruit bar, make their own tortillas, have a special seafood section, their meat section is a true butcher and included all different kinds of meat in a bunch of different marinades. I mean I was AMAZED!!!!! There is even customer seating!!!!

All the cold cuts and bacon and sausage, etc. is in open and close containers like the frozen food section. It is so beautiful! I can't wait to do my shopping tomorrow now. I just did a quick run through today. WOW!!!
WOW!!1
 
I am bit frustrated tonight and you guys are always offering such good advise. At times, when Ken doesn't feel well, or he just wants me there, he asks me to come lay down with him. NORMALLY this is not an issue. He usually is accepting of the fact I hate laying awake in the dark with him changing channels all over the place.

Tonight, OMG!!!!! Not just channels, but music channels, with no video!!!! So I was getting more and more antsy. He is early to bed early to rise and I am not, so just being in the dark wide awake is bad enough, but for all the NON ENTERTAINING channel changing, I was going nuts!!!

I went out to feed the feral cats, and he came out and said "You don't like laying with me do you?" *sigh* "I love laying with you. I hate the dark and the constant channel changing and music all over the map that I don't even like." Was that bad?

I think I am too honest at times. I just can't keep up with myself if I fib.
 
The only suggestion I could make, is that along with what you didn't like, you could make a suggestion of what you would like. Something like, "That makes me nuts. I'd rather lay there with you if we could do this instead:"

For me, I'd rather have my IPod and headphones so I could listen to my own music, or my Kindle and a small lamp so I could read.

I guess I'm suggesting that you meet his need for company, while also considering your need to not go nuts.

Another thought - maybe you could tolerate it if you set a time limit. Something like, "I'd love to be here with you until 10:00, but after that I need to get a few things done before I go to bed." Adjust the time to just under the point where you go nuts.
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