Tuesday, August 20, 2013

A new normal

The hospital people don’t see my real mom. They see a 78 year old woman who, by her thick chart full of medical terminology, is recovering from a brain aneurysm, two brain surgeries in the course of six weeks and all the complications thereof. They see a woman who can’t get out of bed by herself. Who needs help getting dressed, bathing and brushing her teeth. Who can’t walk without assistance. Who can’t drink liquids without supervision. Who isn’t quite sure where she is or what’s going on from minute to minute, hour to hour, day to day.
Yeah, this is my mom. Skydiving. I believe she was in her 60's.
They don’t see my real mom. I try to tell them while they care for her. When she grabs onto the bar that lifts her out of bed, I ask her if it feels like when she zip lined on one of her vacations. When she’s strapped in the harness to keep her from falling when she walks, I tell her it’s just when she rappelled in the mountains. When she eats the pureed food they order for her I say I bet she can’t wait to get home to her newly-remodeled kitchen and cook dad a big meal (or better yet, have him take her to the Fish House.) 

Sometimes the hospital people see glimpses of her. And so do I. Whether it’s intentional or not, mom’s a real cut-up these days. She’s always had a good sense of humor, but she’s really turned on her comedic side to the therapists and nurses, and they all love her. It’s drier now, like my dad’s – said with a straight face but a gleam in her eye, like we’re all not quite privy to her private joke. But it beats the anger, frustration and lashing out that some patients in her condition experience. 

And she can still shoot me “the look.” The look that says to me, “I’m still in here so watch yourself – I’m just not sure how to get out but when I do you’re gonna get it.” The look that used to fill me with fear, but now fills me with hope. Hope that she’ll get better. Hope that she’ll come back to us. Hope that she’ll come home.

True love.
To them, I’m sure, they see patients like my mom every day. But my family isn’t used to seeing my mom like this every day, and it’s hard.

It’s really, really, really hard.

It’s hardest for my dad – the love of her life for more than 55 years. If you ever want an example of unconditional love – for better or worse – take a lesson from him. That man is there every morning for her breakfast and for most of the day, on into the evening, with very few breaks. He helps feed her and brush her hair and makes sure her gown is tied in the back. He brings her the paper every morning, shows her what day it is on the calendar and attends her therapy sessions. He keeps a notebook in his pocket that details every single day since this all began. Every. Single. Day. He winces when they poke her for blood. He makes sure she gets cheesecake for dessert because she really likes the cheesecake. He holds her hand and kisses her hello and goodbye. Every. Single. Day. He misses her. He wants her home so badly. We all do.

My sister is in a tough position to say the least. As a nurse, she balances the medical of her profession with the emotional of a daughter. We rely on her to translate the medical lingo and dumb down what’s going on to our mortal level. We ask her questions she can’t answer but she sure as hell would love to. Her personality has always been one of a caregiver – she can’t help it – but she’s exhausted herself in the process. As she says, “Sometimes being in the medical profession sucks because you can know too much.” I will admit, sometimes I appreciate my lack of knowledge in that area – ignorance is sometimes bliss. But I am so thankful for her knowledge, her compassion and her willingness to be my mom’s medical spokesperson and advocate, all while missing her as much as I do.  

I still find myself reaching for the phone on my way to work. Usually, once or twice a week, I’d call mom from my car – she always knew it was me since I called at pretty much the same time. “It’s that girl,” she’d tell dad when I called. I started a new job in early July and my drive is a bit longer. Even though I stop off at the hospital to visit her on my way to work, I miss talking with her – catching up and passing the time. Selfishly, I miss leaning on her – calling her when things are bad with my kids, or I have a problem with work, or troubles with a relationship. She always listened and always had her two cents to put in, whether it was sympathy, an offer of assistance, or a “shut up and deal with it” wake-up call. She had become my friend as well as my mom, and I miss that.

The Zones of OSF. We're in 'em, all right.
Life has changed for my family as we know it. We use terms like “subarachnoid hemorrhage," “dysphagia,” “vascular spasms” and “central line” like it’s our normal lingo. I’m sure we’ve collectively walked the quarter mile or so trek from the OSF North Parking Lot to the elevators by the gift shop and back more than 1000 times – my dad many more than that. We’ve traded home-cooked meals for the hospital cafeteria and fast food. For the first time in my life, I did my mom’s laundry. Weird.

Most significantly, though, we talk. We talk and we talk and we talk. We’ve spent more time with my dad over the past few months than probably during our entire lives. We’ve gotten to know him better, and love him even more for the man he is. I know he hates needing us, but as his children, we love him needing us. We love having him in our lives. He says he’s thankful for us; he has no idea. Anything we do for him is a drop in the bucket compared to what he and mom have done for us. 

We don’t know what’s in store ahead, but we’re trying, after nearly two months, to adjust to a new normal and the prospect of  a long road full of some difficult choices. What do I want? I want mom to come home. I want her to be able to go for a walk in the park with my dad. I want her to be able sit on her screened in porch and read a library book with my dog Domino at her feet. I want her to cheer on the Bears for another season (even though I’m a Packers fan,) and cook a pot of chili for my dad on a cold winter’s Sunday. I want her at my son’s first JFL football game and my other son’s graduation next year. I want to dial her number and hear her say “It’s that girl” again.

I want my mom back.

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