Toddlers and Terminal Diseases

Watching my father decline is like having someone peel the first layer of my skin off, every minute of every day.

And watching my mother suffer as a result of it is like someone pouring alcohol onto that exposed skin.

And if you think I’m being dramatic, perhaps you haven’t lost a parent, felt as deeply, or had to watch a parent suffer with a disease they know very little about.


I, by all rights, should maintain some sort of gratitude; I have a boisterous two year old who fears nothing, a supportive partner, a great new job, recovery, sobriety, and friends that love me.  But it’s been hard.  Because I’m an addict of all sorts in recovery – my way is going-going-going until I can’t anymore – maybe some of you relate – in the means of NOT FEELING.  But, almost five years into alcohol recovery, and nine years into ED recovery, I’m figuring out that my old ways are starting to fail to work.  Which, don’t get me wrong, is a good thing.  But feels so incredibly shitty.

I had been going-going-going the past couple of months, entering chart notes at my job at the speed of light, googling the latest toddler sleep advice like a boss, and making sure I ran every other day to maintain perfect self-care.  I channeled my sadness about my father into anger by so very nicely screaming at customer assistance representatives when they wouldn’t let me manage his finances for him without a power of attorney even though he couldn’t sign one due to his neurological difficulties.  And then, all of a sudden, I STOPPED.  Like a train wreck.

I started binge eating.  I started to believe that I had, indeed, grown five sizes, and that people viewed me as an ugly mom.  I started to have trouble moving, and motivating myself.  (Anyone who knows me knows this isn’t me.)  And when I threw a surprise party for my social-drinker boyfriend, I carried glasses of wine to guests, thinking that I could “just have one sip.  No one would notice.”

(I didn’t, and PS: They would’ve.)

I was fucking feeling the fact that my father too, was mortal.

My dad has Multiple Systems Atrophy, this fucker of a terminal neurological disease that eventually takes away your ability to walk, talk and swallow.

Fuck that shit.

Right now, he’s in a wheelchair, and has difficulty sitting up due to the muscle weakness it causes.  He’s having trouble maintaining suction through a straw.  I recently ordered a harness and a collar for him so he can sit up more easily and my mom has less problems brushing his teeth.

And the weirdest thing?  On one side of me – there’s this man at the twilight of his life; perhaps not yet at the end, but close.  And on the other side?  There’s this little, wriggling, fearless, hysterical two year old that’s full of life but needs just as much care.  It’s like this opposite-ends-of-the-spectrum thing that blows my mind on a daily basis.  We come in to this life; we need round-the-clock support.  We go out, we need the same.

Two amazing motivations to take care of myself, and still, it’s hard.  I haven’t written in fucking forever because the loftiest of self-care is the first to go when there are meetings to attend and toddlers to soothe.

And – the best part about this is – I’m not even the person who’s taking care of my Dad round the clock.  It’s my mom.  And I feel guilty for that.  I feel guilty for having someone of my own to take care of!  I feel guilty for having my own life.  I wish I could do more.  I’ve taken care of things like their bills and financial matters, and listened to my Dad stutter through his feelings, but it’s not enough.  I wish I could change it.  I can’t.  I’m powerless.

And I have to take care of my terminal disease(s) all at the same time.


Yesterday, I dropped off Fiona at my parents (My mom watches her for a day while I work.  She makes my Dad smile and brings light to my mother’s life.  It works.).  I spent a couple of hours there, like I usually do.

My Mom was laying Fiona down for a nap, and my Dad had fallen asleep in his wheelchair, mostly because it takes too much muscle strength to stay awake all the time now.  I grabbed some cleaner, and some paper towels, and started to clean my mother’s kitchen.  It was not up to her usual OCD standards, and it was something I could do.

My half-brother, Vic, walked out into the kitchen.  He lives there, and is currently a big help to my mother.  He struggles with his own stuff, but has kicked ass as of late with all of what he deals with.

“How’s it going?” I look up at him briefly, and return to scrubbing.

He smiles quickly.  “Slow,” he says.

No more words are needed.  He fixes a snack, and prepares to take my parents’ trash out.  He leaves with the trash without a word.

Twenty minutes later, I am pulling out of Gilson Road onto 119.  As I’m turning to left to head back to work, Vic is heading back towards my parents.  He flashes his lights, and we both put up a hand in greeting, silently acknowledging the vast heartbreak of which we cannot put words to.

4 thoughts on “Toddlers and Terminal Diseases

  1. You’re an angel on earth to help, in any way you can. It’s nice that you have Vic, and he has you, for whatever little bit of comfort and solidarity you can offer each other. This is tough stuff. However you need to get through this, that’s the right way. Anything you need to get through. Don’t forget to ask for help. .We try to do too much.
    That does sound like a fucker of a disease. Ugh. Bless you and your family.

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