SOS

IS has really been getting on my nerves. Constantly belching. Whining. I'm tired of it...

aarrgghh

I thought I would lose my mind today. Even though he can't help it, the IS makes all kinds of noises all the time now. He coughs, he spits. He gulps INCREDIBLY loudly. He takes quick, shallow breaths at times. He has the PD mask and looks angry or in pain all the time. His cheeks are completely sunken because he's so thin. I can't stand it. It was all I could do to keep from screaming. Oh, and he belches constantly too. Am I a horrible person for being so turned off by it?

SOS

Well, the IS is still having problems eating. Now, not only does he spill food all over himself, he coughs and belches constantly while eating. When he swallows liquids, there's a giant gulp. Last night he was sucking on a piece of hard candy so noisily that I almost had to leave the room. I vascillate between feeling trapped and resentful, and feeling sorry for him. I want to reach out and hug him, but his bonyness at this point only makes it harder. I miss the man I married - the one who could make decisions, wanted to do things, felt decent, contributed to the household. I'm so tired of being responsible for everyone and everything. I want someone to take care of ME. I want someone to hug ME. I want someone to tell ME that things will be OK.

Vacation?

We took our son to college last week and then drove a short distance for a few days off. I drove most of the 10 hours to drop the son off, and then 100% of the rest of the driving. After a few hours' drive, we arrived at our destination on Sunday. We walked around for about an hour, until DH started feeling poorly.

We returned to the hotel and he napped while I checked email at the hotel business center. An hour or so later I went back to the room. He was up and still not feeling well. By this time it was nearly 7pm. He was short of breath and his shoulder hurt, on top of the swallowing problems he has been having. Because of the shoulder, I told him I'd take him to the ER. It was a brand new hospital, but a very busy one. They took him right away due to his symptoms, and ran an EKG, chest x-ray, and catscan. All came back normal. We left at nearly 2am. I left the hospital at 9pm to grab a burger since I hadn't eaten.

The next day I let him sleep, but I got up to do the sightseeing we had paid a lot of money for. I thoroughly enjoyed myself - didn't have to listen to any complaining and could go where I wanted. About 1:15 he called and said he was ready for me to come pick him up. I went to get him an hour later (had to take a bus to the car, etc.) before I'd eaten lunch, so that was my first order of business when we got back to the sightseeing. Then we went to a museum which took a very long time, preventing us from seeing much else. But I'd known that he wanted to see the exhibits and since he didn't get to do much else, I gave in. I was pretty tired from walking all day, so we left about 6 and went back to the hotel for a quick swim.

After we showered, we went out to dinner. Got up the next morning and visited our 2nd site of the 3 we planned to hit. It was a good bit of walking in the heat, and DH started feeling poorly mid-afternoon. So we decided to just take a driving tour of place # 3. As we drove, I noticed that he looked miserable. When we arrived at the 3rd location, he told me he was ready to return to the hotel. So, that's what we did. I was very unhappy, because that was our last day, and it meant more that I wanted to see but couldn't.

I was quite resentful about the ER, and extremely disappointed that he just cannot do these kinds of trips anymore. He wears out very quickly. Once again I found myself wanting to leave and find someone who felt as active as I do.

Today we saw the doctor as a follow-up to the ER. He basically said that nothing life-threatening is going on, so we should talk to the neurologist. DH weighed 124 pounds fully dressed with shoes on. And I've gained weight, of course.

I'm pretty miserable...