My days are spent trying to keep Mike comfortable. The feeding tube is a continuous problem, and we landed back at U of M with a clogged j tube on Tuesday. The j tube is the one we feed him through, and give him water to keep him hydrated. It was clogged for 2 days, and despite everything we did nothing worked. The nurse was here all day Tuesday, and nothing worked.
At one point on Tuesday, I went upstairs and laid on the floor sobbing, and wishing I were dead. Anything but being here, anything but this unrelenting stress, and nonstop grief. I gotta say, it didn’t help me with my situation. Finally, I started praying to God to help me just get through the next 5 minutes. After a few minutes of praying, I was able to get up and keep going.
When we got Mike back to the hospital on Wednesday the doctor was able to get the tube unclogged without having to replace it. What a gift that was. He did tell us that it is going to happen again, and if it does they will probably replace it with two separate tubes. The tubes in there now are very small, as the opening was very small, and they couldn’t get the bigger tube in. It is what it is, and every time I flush water into the tube, I pray it doesn’t clog.
Yesterday, we had a grief counselor come and meet with us. One of the things we talked about was getting me some help. The problem is the volunteers are just volunteers to sit with patients. Mikes situation is very complex, so even if I could go out for a meal with a friend, if the tube has issues, or if there are other issues they wouldn’t be able to help.
We talked about getting a meal train going or something like that. I have barely had an appetite, and have had no interest at all in cooking. Mike can’t eat, and It just makes me sick to even think about eating a meal in front of him. He wants us to cook meals, and act as normally as we can, but I have had no interest in it. My daughter has been asking for me to cook though, and some small sense of normalcy would probably help us all.
Mike started writing in a notebook in the hospital, just thoughts he has, and notes to us. She suggested we try that again, and he agreed that would be a good idea, so I put the notebook next to him, and hopefully when he feels good he will do it again.
One of the things Mike told the grief counselor is that he misses my laugh, and me laughing. Last night with that in mind, we decided to order take out for Brooke and I, and have family movie night like we used to do. We watched a comedy, and for a minute it was like it used to be.
It is just hard. For 3 years, we have been focused on Mike getting better, and getting to the next treatment. To accept that there is no next treatment is proving to be harder for me than I ever could have imagined.
The joy is gone.