Good Minutes and Bad Days

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.

Anne

12 Comments

  1. Not sure just how you are getting through every day! My thoughts and prayers are with you all. Hugs!

  2. Hi Anne, I am praying for Mike, you and your families daily. I have been wanting to stop out to visit him, and would love to still see him and meet you:). You are such an inspiration of strength and love. I would be happy to sit with Mike while you run out for dinner or drinks or grocery shop or whatever. I’m not worried about the feeding tube, I can handle that no problem. I would love to do that, so let me know how you feel about it. We can set up a time this week, or even tomorrow evening? Let me know, you can call at 810-623-1132.

  3. I pray every single day that you are given strength Anne to stay strong through this. I have been there and yes, it is difficult, exhausting and mentally debilitating but I tell you from the depth of my soul you will get through it and never regret it.

  4. This is beyond words. Beyond horror and grief. I know I am not alone saying I feel helpless listening to what you are both dealing with. It seems like only God can ease the pain somehow. I continue to pray for him to lift you both.

  5. This STINKS! I thank my lucky stars to be blessed with your friendship. You guys are two of the most amazing people I know! Simply the best! Wishing I could make everything all better, please let me know if I can help, sending continual hugs, love, & prayers!

  6. Following you through Carrie – mutual friend. I’m a nurse at UM and care for patients in our palliative care beds. I am very willing to sit while you go catch your breath for awhile. I live in Howell. No charge…text me if you want 517-775-7576

  7. My heart hurts for you. Prayers for your strength, comfort, and peace Anne and Mike and family.

  8. Praying for you and Mike. I “know you” via Stephanie and her groups and probably the suite. You are such an amazing woman. Know that we are lifting you up in prayer.

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