My very own Parkinson’s-themed Pandora’s Box.

“I don’t want to,” my mom said over the phone line. Her words were halting because of the Parkinson’s, and while there wasn’t any heavy emotion in them, at least not any pleading or whining, it was impossible to miss that my mom was crying. Crying to me on the phone because she didn’t want to do something. Because she didn’t want us to make her. And I died a hundred gut-wrenching deaths listening to those four words.

“I know you don’t. But maybe you’ll meet a bunch of cool new friends. Think of rehab as an adventure,” I rallied.

I loathed myself at that moment. I am a horrible person. My mom turned to me as a peer, as adult, and I used my “mommy voice” filled with fake pep and cheer. I couldn’t think of anything better to say. I couldn’t offer anything that would comfort her or make the situation any easier. I treated her like a child and tried to cheerlead her through what we both knew was going to happen regardless of what anyone wanted. Even if going to rehab was the best of all options (certainly it was better than not being well enough for rehab), I still felt like I failed my mom.

Last Friday, my mom had what we initially thought was a massive stroke. My cell phone rang mid-afternoon, displaying my parents’ house number. My parents call the house on weekends; never my cell phone and never in the middle of a workday. My brother told me that when he came home my mom told him she couldn’t feel her legs and had left-side weakness. Her neurologist sent her to the hospital because he suspected a stroke. I spent Friday night imagining my mom living with Parkinson’s and only her right arm as I waited for news from CT scans and MRIs. Mum was still talking (as much as she could, which isn’t much due to the Parkinson’s – she has trouble making muscles do what she wants, thinking of words, and has a bit of Parkinson’s dementia on top of the rest of the heartache), and things didn’t seem dire, so my brother suggested waiting for the test results before I decided if Kim and I needed to fly home.

I spent Friday night trying to process everything. Okay, really I spent it being mad at myself, only I didn’t figure that out for another few days. You see, it took me a long time to make peace with my “new” mom. She’s so, so different from the mom we grew up with, the mom who raised us and laughed with us, taught us to chase frogs and snakes and indulge our imaginations and crawled on the floor with my babies. There are flashes – Mum still loves to be teased and will still try to kick us (good-naturedly) if we get fresh – but I’ve learned to think of the person my Mum is now as a separate person from who she was, both the same and different. Good or bad, right or wrong, It’s how I cope. It’s how I am able to love and enjoy Mum as she is now without drowning in grief for who she should be. Should is such dangerous territory.

I’m mad at myself because I thought I had firmly shut the lid on should. I thought I had made peace. Turns out that after tests reveal no evidence of a major stroke (but possibly – probably – minor ones), no spinal tumor, no spinal or systemic infections, no reason whatsoever for the paralysis and weakness, when the doctors decide that your mom should go to rehab to see if they can make her whole(ish) without knowing the underlying cause for the paralysis, I can still be thrown for a loop. Because my mom has lived in fear for a long time that this day would come. She shared with us so many times that she does not want to go to an assisted living facility or nursing home. Part of it is that she hates change; she always has, even in the “before”, but now that she has a bit of dementia and craves order and predictability, change is even more her enemy. Another part of the problem is that she’s worried that once she moves to a facility, she won’t ever come back home. When we’ve talked about, she always brings up how Grampy never came home. How our neighbor lived to be so old because she never gave up her walks to her daughter’s house. Mum doesn’t often talk about her fears, but when she did, her answers were unwavering: nursing homes and their ilk were the beginning of the end.

Knowing that, it’s hard to blame her for begging us not to make her go.

But we did. She was transferred to a rehab facility the night before last and when I called to check on her yesterday, to offer comfort and try to undo the damage (to myself) from my previous less-than-stellar response, Mum surprised me by telling me, “Oh, I like it here.” (Cue my relief, frustration, and immediate questioning of both whether I knew anything and whether she really meant it.) Granted, it was Day One of a potentially long stay, and she only likes it because it’s better than the other facility she could have ended up at, but we’ll handle our emotional whirlwinds as they happen.

It’s still not easy. Talking to my mom was very difficult; her words came much slower and her dementia was much more prevalent than usual, because of the disruption of routine, or maybe from the minor stroke. There will be more challenges ahead, and managing them – Mum’s challenges and my own reactions – are never easy when you add in the fact that I’m 1500 miles away and painfully, constantly homesick. We’ll deal with the dementia and the new physical limitations and the fact that my mom will either leave rehab to go home or she won’t. I’ll either be able to make peace with the situation again, or I won’t. It’s a difficult, crappy situation all the way around. But it’s the situation we have in front of us.

And that’s the honest truth.

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One Response to “My very own Parkinson’s-themed Pandora’s Box.”

  1. Jenna Hatfield Says:

    Oh, my heart. For you, for her, for all of you. This is not an easy place, not an easy journey. You will all be in my thoughts and prayers.

    (And you wrote this beautifully.)

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