terminal

April 8, 2024

April 12th

It’s strange. One would think that at the start of the worst week of my life I would have something to say. Something to impart on how I am feeling… But I have nothing. Genuinely nothing. I feel numb. As if I have hit pause on my entire body. I imagine if I were to pursue some answer it would say that it is some sort of trauma safety response… However I don’t have the time or the energy to do it. And in the end… what would this answer serve?

For some context, this Friday (April 12th) my husband will go to bed without his breathing mask. It is this mask that has kept him around as long as he has, and without it he will most likely pass way in his sleep. We have spoken with his hospice nurses and they will be there to help keep him comfortable as he “transitions” into the next stage of his existence.

I have known that this day was coming since he was diagnosed with ALS. It’s not like that this was sprung upon me out of the blue. I knew. I have known. It’s just weird to know the exact day. Prior to this I would wake up every morning and see if he was still here, or whenever he took a nap. I have been convinced for sometime that he would go while we slept. Primarily because that was what the doctors had told us was most likely to occur, and even before he had been diagnosed I would wake up in a panic throughout the night and see if he was still breathing. It’s weird. It was as if I knew.

All I want to do is open up my heart and pour out all I feel… I am craving some semblance of vulnerability but I have none. Is this shock? Maybe it is denial, until I am there to see and feel the reality.

For so long I have lived with the “not there yet” attitude. It was the title to our weird little video blogs we would do on our trips. It was literally the words I would say to myself in the early days of diagnosis, when my mind would spiral into all of the gory/overwhelming possibilities. To calm myself I would repeat “we’re not there yet” so I could focus on where we were in all of this. Well… we’re here.

The thing that is keeping me together is what Charlie said the other day, when I asked how he was feeling: I’m excited to see what happens next.

January 26, 2024

A New Member of the “Lollipop” Guild

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.