Michael got sick again last night. He woke up with the same stomach flu like symptoms he had last week but this time it seemed worse. It’s obviously not a flu but some weird intestinal thing.

Last night Gina and I cooked chicken and rice and we had fruit salad for dessert. We all sat at the table. He ate a lot. Then my caregiver and I got him ready for bed, then I gave him his meds and he started to fall asleep.

I went to bed early but then I woke up at 12:30 and came down and he was awake. Lately I’ve been sensing when he’s awake and it wakes me up. It’s like having an infant. You know when the baby’s awake even when the baby doesn’t cry. Michael doesn’t make a sound but I sense when he’s awake. I came down and I sat with him until about 1:30 when he fell asleep.

My caregiver woke me at 6:00 to tell me he had thrown up. He was full of diarehha and the vomit also looked like diarehha. I called hospice. They said he could be throwing up fecal matter if there’s a blockage, meaning he’s actually constipated and there is a blockage somewhere which is normal for bedbound people. It was very concerning for me.

Perhaps the chicken last night was too much for him or something. We got him all changed and I felt so guilty. I was tired and I felt like I was dragging. He threw up again a while later and ran a slight fever of 100.1

We changed him again…bed sheets, pillows, everything and rinsed out his mouth with Listerine to make sure there was no bacteria in there. We gave him some broth and he went back to sleep. I dragged myself upstairs to start work for the day.

When I was on the phone with the nurse we talked for a long time and then she said she was glad to finally talk to me. I said, “Excuse me?” I hadn’t even had coffee yet and I wasn’t sure if I was hearing her right. She said there are some family members that stand out for her when she listens to other nurses give their report. She said I was one of them and though we’d never met and never even talked before, she felt like she knew me.

She said there are some people that just sound so impressive when the nurses give report and some family members who seem extra devoted and extra dedicated and I was one of those people. She said she doesn’t know how I do it.

It was odd for me to hear. Whenever I falter or feel tired, I feel guilty. When I wonder where my life has gone, I feel guilty. I’ve always said that if I could have one Michael smile a day I could go on like this forever but after 9 months I know it’s not true. I feel fragile some days, some days I feel like cracking and I pull myself back together and go on. Some days I think, “This is hard.” and then I pull back from thinking like that. But some days it really is very hard.

So with random thoughts in my head about being tired and sometimes very overwhelmed “devoted spouse” is the LAST thing I think of myself as! She said she could hear it in my voice as soon as I described Michael’s condition to her how concerned I was about him as well and she was sorry he was having a hard time but she was glad to talk to me because she’s heard so much about me.

It’s so weird I was beating myself up and thinking I did something wrong by making him sit up and have a chicken dinner last night.

So I said well he’s a special guy and he deserves it and I would do anything for him. And then I started crying.

I have thoughts, many days, that no one is ever going to do for me what I do for Michael if I got really sick. There is no “me” in my life anymore as the one who would do it for me is gravely ill.

There is no “we’re there for each other” any more as I am the one who is left standing. Alone. And some days I know that Michael would do his best for me if the positions were reversed but ultimately I’m the one who is best suited for the way things are now. And I know that.

I’ve been trying to see and understand that to love someone like this and to have it recognized by people who see families of the terminally ill every day is really a gift. A gift that is bigger than if someone was still there for me. I have been loved by Michael in such a way that to do this, in this way, for this long, seems like the least I can do.

And to be loved so deeply and so unselfishly that you can only love back even when it’s no longer the “stand up and give back” kind of love is to truly be loved.

Michael’s gift to me is that after all the pain and tears and abandonment and heartache in my life, I can still love like this. I can give like this. I can be as devoted to him as I know he would be to me.

Michael’s gift to me is the ability to love him as I do.

To love him as I do.

To love as I do.

To love.

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