Is it tiring for you to read about all this? Believe me, I understand. Is it boring for you to read about all the things that must be done in order to care for Minke? Are you rolling your eyes? If you are, I definitely get it. If you’re exhausted from reading about it, try living it.
We squabble. We bicker. No different than any other married couple, except it is different. I lose patience and Minke gets frustrated and it’s kind of a constant thing. Would I prefer the alternative? OF COURSE NOT! I know I would have much more patience if I wasn’t always in chronic pain.
I want to eat my dinner after feeding him his. But when I go to sit down, he needs something. And then I try and eat and he needs something else or he can’t get comfortable or he needs his Bi-Pac mask adjusted. So then I’ll go sit down to eat and wind up warming up the meal at least 3 times.
We no longer eat together. And we no longer sleep together. And we don’t do much of anything together. He says, “Let Molly be my caregiver so you can be my wife.” But I don’t feel like a wife. I feel like a caregiver, and sometimes I feel like a babysitter.
You have thanked me for my honesty and for being real. Well, here’s a deep dish of reality for you. My living room smells like a bathroom because that’s where Minke uses the commode. I’ve never lit so many candles in my life. Sometimes I’m undone by all the clutter of the many, many medical supplies. I thought I had gotten over that, but nah … seems I’m still very bothered by it.
I realize this post has turned into a rant, and I should have just posted all these thoughts in my ALS Spouse Caregiver support group. Most of the posts in my group are like this. We all understand each other. It’s a safe space. We all know what it’s like to live with a terminally ill ALS patient. We all know it’s an impossible situation and we either learn to live with it or let our resentment get the best of us. The resentment, at this stage, is pointless. It’s not Minke’s fault. I’m basically feeling less resentful these days. But the constant fatigue has taken a toll, way beyond anything I’d ever imagined.
I’m going to take a break from blogging for a while unless there’s something major to report. Well, it’s ALL major, but you know what I mean. Barring no immediate emergencies, this is going to be life for the indefinite future. Until Minke gets worse. Or gets the trach. Or both.
I suppose I wanted all of you to know I’m not the warrior some of you think I am. I’m a human being with more flaws than I’d care to admit. And I feel guilty as hell when I snap at Minke. I already told him, that when he’s no longer here, I’m going to relive those moments over and over and never forgive myself. I know it.
I hope I’ll be able to forgive myself!