One month

We got the official diagnosis in September 2020, with an initial prognosis that we’d be lucky to have a year with her. 

Here we are, almost two years later. I’m so grateful for the “extra” time we got, but it has been a rollercoaster. A nightmare. We’re now faced with “less than a month” left, but she’s surpassed expectations before so only time will tell what that actually means for us. 

You’d think that after more than a year of grappling with this, that I’d be ready — as ready as one can be — but I’m not. I still can’t talk about how I’m doing (or many things, for that matter) without breaking down. 

I am still physically, mentally, emotionally as much a wreck as i was September 2020. Maybe more so, because the cumulative weight of the past two years has been crushing. I’ve helped my mom make countless medical decisions. Medical decisions that I painstakingly relive all the time, wondering which ones I could have made differently to have avoided, or at least delayed, some of her immense pain and suffering.

It’s laughable and sad to notice the mental gymnastics my mind will go through, grasping at any sort of plausible denial it can get its hands on, even now when faced with the undeniable and inevitable. This morning I was looking into how much oxycodone we can give her without accidentally overdosing her (though, honestly that might be a better way to go), and I zeroed in on these possible side effects:

  • drowsiness
  • trouble sleeping
  • lack or loss of strength
  • confusion
  • body aches and pain
  • muscle stiffness, tension, tightness, pain, or weakness
  • weight loss

My heart leapt. Maybe my mom isn’t dying! She’s just taking too much of her painkiller! Then reason quickly enters, disrupting this fleeting (and incredibly stupid) moment of hope.

I’m stepping away from work, so I can focus on taking care of and spending time with my mom.

I’m also possibly going to unleash a lot of messy, raw, half-formed ramblings onto my blog because after 21 months of swallowing them, sitting with them, I might burst. I have countless disorganized journal entries — written in moments of insomnia, grief, anxiety, rage, guilt, or stress — and written out of necessity when I desperately needed to get things out of my godforsaken head.

5 thoughts on “One month

  1. I’m sorry Jenny. I lost my dad a little over a year ago after a long decline. If you need someone to commiserate with, I’m happy to be a resource.

  2. I’m so sorry you’re going through this. I lost my grandma 2 years ago to ALS, at the beginning of lockdown. It was painfully slow, in all aspects. I’m here for you.

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