The Day-to-Day Today

Minke and our Zeldie Girl! April 18, 2023

To those of you who think I’m some sort of hero for taking care of Minke, believe me, I’m not. I’m human and I’m being pushed to my limit. 

Minke thanks me all the time and says, “You are a hero. You could have left a long time ago and you didn’t.” I’m appalled by this. What kind of monster would that make me? To leave Minke? NO! As hard as things are, I’m definitely not the type of person who would simply run away when things get too difficult.

But don’t, for one second think that I don’t imagine what it would be like to be out of this situation. But when I fantasize about it, I fantasize that Minke is well; I don’t fantasize about running away.

With every progression of Minke’s illness that leaves him further incapacitated, is one more thing I have to do for him. 

He can’t put his glasses on. He can’t put his headphones on. He needs my help to have a drink of water. He needs the wrapper of a cough drop removed. He needs that cough drop in his mouth. He needs the covers pulled up. He needs, he needs, he needs …

It also feels to me like Minke’s personality is changing. Why wouldn’t it? The changes occurring to his body are unprecedented, rapid, and scary as hell! He does share some things with me about what’s going on in his head, but obviously not everything. I think he’s taking inventory of his life. Honestly, I’m taking inventory of mine. The reality of death can make one very philosophical.

But what I find the hardest about his changing behavior, is I feel like I can’t share things with him like I used to. When Minke is having a good day, it’s both a pleasure and a relief. He’s animated, funny, and talkative. But when I want to share some of my teeny, tiny little joys (which are few and far between, believe me) he’s not interested. He’s distant. Off in his own world and not engaged with what I’m saying. I see his glazed eyes, and then I feel like a dumbass for trying to laugh with him when he’s obviously not feeling it.

And I feel hollow and empty, because I wanted to share something I found funny or lovely or cool, and he’s not there for me. I’m feeling more and more solitary, even though there are many people around the house on a daily basis. But my best friend? He’s checked out.

I have a friend who is a potter. I love his work and I’m going to give him a plug on this blog right here and now. But I’m bringing this up, because today, I received a new pot I ordered, and I am in love with it! And I was so excited about it, and I went to go show Minke, and I got … NOTHING! And the soundtrack in my head went, “Wah, wah, wah.” It pissed me off. I don’t get many moments of fun and giddiness and I wanted to share this with him, and he was not into it. I’ve been making so many compromises about so many things since this journey began. And I keep saying it doesn’t matter. But it does. And it hurts. And as I’ve said before, I keep losing different parts of him and the ache is excruciating.

So, here is my beautiful new pot! I love, love, love it. It’s now sitting on top of my very groovy little table on my front step. Moving closer and closer to the bohemian vibe I love. My friend’s name is Mark and you can find his shop on Etsy. It’s called MuddyRiverClay and his pieces are whimsical and delightful and they bring me joy. Have a look! And thank you, Mark, for all the charm and magic your pieces of art bring me.

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!

Artist: Lisa Aisato