I entered into the Midnight Madness short story competition and have had a week to concoct a short story. Have I started? Not really, other than planning and plotting in my head. So, I’m finally sitting down to bang out a rough draft. In the past I have done it day of the deadline so at least this is some progress. However, to get the engine purring before I dive in, I thought I would write a blog. It feels like so much and nothing at all has happened.

My husband has definitely progressed. But I think it’s a subtle change that isn’t as obvious to it’s broader implications. For some reason he has become OBSESSED with his mouth. He has explained to us that it feels like he has a tapeworm that is trying to escape through his mouth. Like this parasite is reaching up through his esophagus to escape. We called the hospice nurse and she assured him that “that” isn’t possible. (However I was told a story from my grandmother that her mother had a tape worm and after a bite of horse radish it crawled out… but I guess that was a ‘tall tale.’)

The nurse’s suggestion was to provide us with these little “lollipop” sponges to moisten his mouth and try to break up that dried phlegm at the back of his throat. Now every 20 minutes I’m dipping in these little sponges and swabbing his gums and tongue. This isn’t that much of an ask, except for me it comes with past trauma and lots of emotional baggage.

When my mom had lost the ability to swallow and was heading toward her end, the hospice nurse provided these exact “lollipop sponges” to moisten her mouth and lips. Seeing these again has brought up the feelings attached to them. I shared my feelings with him and he assured me that they are unrelated. This is not a sign of things to come. At least not in the immediate future. Yet… aren’t they?

With ALS he will eventually lose the ability to speak, breathe and swallow on his own. It’s just a natural progression of the disease. The muscles involved in these bodily functions atrophy and he is left kept alive by machines. He has already shared that he doesn’t want that, and I do not blame him. Neither would I. So… we have entered into a new waiting game, in my mind, of whether this is a sign of that or not.

I hate all of this. I hate this for me and for him. He feels so much guilt for how much he is relying on and asking of Tony and I. And I feel bad because in the face of this new task I am overwhelmed with it’s overall meaning. So I respond by being short and cold when he asks. It appears that I’m angry at him for making the requests, when in fact I’m mad that this is happening and don’t properly know how to process this change.

It’s further made worse because I generally don’t know how to process my feelings. I never learned healthy coping mechanisms or how to unpack my feelings in a way that I could handle them without flying off the handle. My go to response for most things is anger/rage. I think it makes me appear “tough.” Yet that couldn’t be further from the truth.