Milestones

[Nuts]

I remember my husband telling me early in the course of this disease that when he could no longer feed himself our days of eating out together would be over. He said I should go, but he would not be fed in public.

Last night, for the first time, he allowed me to finish feeding him his dinner as his arms just gave out.

This morning we made the effort to go out for breakfast, and he asked me to finish feeding him--this time in public.

Several tough weeks have lead up to this, but as with so many other early declarations, he has backed off of his position once we are faced with the reality of giving up on something he enjoys because of and outdated matter of pride.

Jeff Long, if you are peaking in at us from your place in heaven, thank you for that meal in DC that the four of us so enjoyed, where you allowed your lovely wife to feed you as we talked and laughed.

May be give another PALS the gift you gave us.

Becky

 

[affected]

Becky in spite of the horror this represents, that post is so beautiful.

I remember Chris saying to me - we all think we know where we draw the line, the as we get up to the line we shift it.

Being able to not only shift the line but do it with grace and keep enjoying life - way to go MATT!

 

[KimT]

Becky and Matt. I'm just glad I know you through this forum. Thank you.

 

[scaredwifetx]

Becky, thank you for this thread. Your words were so beautiful. You and Matt are amazing and a great motivation to myself, my husband and everyone here.

 

[tripete]

My milestones trip me, Matt seems to roll over them gracefully.

 

[chally]

Thx Becky& Matt for all your courage and strength in helping me & beth work out our struggles with reaching milestone. Never say never.
I will be getting the feed tube end of March get fed publicly often which at first was embarrassing but now I kind of like it as I enjoy the food and company more easily and not just getting frustrated. Love ya guys
Chally

 

[Dave K]

That is a great milestone of human dignity. Our society sometimes tries to program us to think that the onset of disability will diminish our self-worth, and that if we must rely on others for our basic needs, then it's time to give up on living. Just as Jeff Long proved to you that there is no loss of dignity in being fed, your post helps show that fact to others. In my wife's case, her friends LOVED to feed her, and everyone was lifted up a bit by the experience. Life is what you make of it.

 

[gooseberry]

Becky, Steve refused to leave our house. It was so stressful never being able to open the blnds, go out and hear the birds. I am glad for uou that Matti is still willing.

 

[DaChief]

Thanks Becky. This gives me something to think about as I have already started thinking about milestones ahead.

Bruce

 

[Nuts]

Such wonderful friends I have here. Thank you all.

We say it all the time--that we don't know where we'd be without this group--but it's so very true.

A week ago we met another couple living with ALS at our one and only local grocery store. The supercharged Permobile running with a vent AND oxygen bottle are pretty telling; we struck up a conversation and plan to get together soon. As much as I hate to see anyone else dealing with this monster, it was a good feeling to meet two other people who live close and understand. All I could think was I wonder if she has found the kind of online support that I have. If not, I'll introduce her to my family here.

My newest milestone---learning to understand the Trilogy settings. Laurie was right about Matt's sleep apnea--I'v been tweaking settings (with my RT's supervision) and it's getting much better. The problem is, there is only so much space in my brain and other things are falling out...

Becky