AngAK, I gotta confess that KFC bucket ad always makes me wish I could eat too. And I never was a big KFC fan to begin with! Go figure......

Amy, thanks for the compliment. You (and John)have quite the great attitude too.

Nelie

Please make sure your husband is not in pain. His sitting there with his head in his hands makes me wonder, as this is what my brother did when the pain in his mouth and head was too much. If he is hurting, go back to the doctor and make them look and look and look. If not, please remind him that eating is not everything. He is and his being with you is the most important thing of all. My brother was always very good about our eating or cooking around him, though I now the guilt you feel all too well and it took everything I had to swallow food myself. I STILL feel guilty and he's been gone over a year. But, he didn't care. He was just glad to be there and I guarantee you, if he had the choice to stay with his family and not eat, or pass on, he would still be here today. Find something new to enjoy together. Just enjoy each other. It's the most precious thing you have.
Best wishes,
Tonya

On my drive home today, I was thinking about people telling me they feel guilty eating around me, and why I never know what to say to that statement. Then it dawned on me that it's the same thing as saying to a paraplegic "I feel guilty walking around you". Of course, I guess many people DO feel that way in the presence of people in wheelchairs,as anyone who is wheelchair bound will tell you that when they're out in public people often seem unable look them in the eye. But I don't know anyone who feels like it's socially acceptable to TELL them that like they are supposed to be thanked for that guilt.

I'm not trying to come down hard on anyone here who has said they feel guilty because were I on the other side of this, I'm sure I would too.

But I just wonder why that statement is seen as socially acceptable (this is why I'm a social scientist--I think about things like this) and I think it's BECAUSE dysphagia is an invisible disability until you are around other people who are eating so the other person eating when you can't puts you in a situation where you visibly *become* disabled in some sense. Whereas just going into a public setting where people are standing and wealking puts a wheelchair bound person in that situation.

In terms of how to reply though, I think there really isn't a good reply to this. I have a disability. If I'm around someone who is eating it's because I choose to be most of the time. I don't know how to handle their guilt about that.

Anyway, just some thoughts while we're talking about how this affects us.

Nelie

Nelie, here is how I handled that all the time I was PEG fed. When someone told me they felt guilty, I very sincerely told that person they had no need to, as I was not uncomfortable seeing them eat. Situation defused. Such people included my A++ caregiver husband, close friends, as well as people I knew only slightly in a social group. In all cases I took it as an expression of concern for my feelings, not rudeness. Maybe I was deluding myself.

Jordan, to bring this back to your post, although I did not experience it, I have learned that many people who go through treatment suffer depression. I have been assigned by one of my former docs to try to help a person in that situation now, so I know how debilitating it can be. I say this because your husband should possibly be on antidepressant medication. Tell his doctor. Even small things can be mountains to a person who is depressed, or so I am told.

Joanna, I DO take it as concern for my feelings. Absolutely. And I have replied in the past as you did. At this point, these are people who apparently don't believe that reply because they still say it to me. *That's* what I really don't know what to do with!

Jordan, I agree with Joanna about the antidepressants. For some unknown reason I never hit a depressed period in the two-cancer battle or its aftermath. I think deep down because I feel like I just can't afford to lose my will to fight. But I have been depressed before to the point where I needed antidepressants, at another time in my life where a lot of unhappy things happened at once, and small things DO become mountains. And dysphagia is not a small thing anyway.

Nelie

Nelie, there are just some people who apparently enjoy wallowing in guilt. Let them enjoy it and know that you are providing a service to them (grin). It takes all kinds...

What a wonderful support you all are. Nellie- you are right. I need to eat in front of him.He doesn't want to go out or have anyone over- but you are right - I am the first step. In the beginning of september ,he was able to swallow cream soups and it was going well. The wire accident has sent us back- and it is like starting over. I think it is this as much as anything(up-down- up- down) that is so hard. he was dilated again today and they are going to do it every week. His outburst, saying he has ruined my life and the crying(while it destroyed me) I think helped us- he was able to express his emotions and I was so focused on his being angry and feeling hopeless about himselfthat I hadn't thought of his feelings about me-guilt- What kind of social worker am I?
I wrote saturday night becuase I was feeling so helpless and alone. Your responses are helping me get back in the ring again. I do have all the patience and time in the world for gil. he is the best thing that has ever happened to me and he knows this. The new norma is fine I just need him to be apart of it with me.
P.S.We got home from the hospital about 2:30pm. The ro called about an hour ago and said the PET scan showed no sign of cancer anywhere in his body- & months since his last treatment. He acted like he didn't even hear it. I let out war hoops and did a little dance. Thats' always him and thats always me. He and I fell in love even so.. Thank you

Even so- that is what love is all about, P. Amy

Indeed. That was a very sweet post, Jordan. Gil is lucky he has you dancing the victory dances for him!

I know what you mean about the wire accident setting you back. It doesn't sound like his perforation was quite as bad as mine in July (my lung collapsed) but that whole thing set me way back physically. And it was so discouraging to be back having to take serious pain meds and feeling like I'd been hit by a truck right when I was starting to get a normal level of energy back! Things did get better gain, though. They will for him too.

Nelie