I want to be a hero, but today isn’t the day. Today is the day I bend into the sob and ask myself, “What is this?”
It’s a rhetorical question. I know what “this” is. But I double over anyway.
Losing is hard.
I spend two weeks at the suburban (capital city) home with my honey, then two at the water hollow (farm) home close to my parents. The first two days at the water hollow are the hardest.
She’s still swimming to the surface, bubbling “I can’t remember the words” because she’s a fighter. Even as we’re giving up, she hasn’t. She can’t hide what she’s lost. My throat catches as I fill in the blanks for her with the words that disappeared since… two weeks ago.
Sometimes I power through the two weeks without a wail. Not this time.
I would bargain, but with whom? For what? There are no more drugs. No heroes in the corner waiting to come forward with a measure of relief, certainly not a cure. Certainly not at her age.
At the end of a sitter’s day, I fetch mom. We walk from their house down to mine. I hold her hand because this incredible athlete’s steps are unsteady. Sometimes I hold her back as her gate careens her forward or off to one side.
I can’t… She flails her free hand for the word… they just go. I fill in the they blank —”legs”—, hold her hand tight, focusing on the sweetness of holding hands instead of the bitterness of an athlete’s loss.
Mom’s a fierce athlete. She didn’t always win but she never lost without a fight. I wish her grandchildren knew the tales of her prowess. I can’t pretend to know all the stories, but I witnessed a few, like these.
- Mom played on a basketball team when we lived in Spain. The year after they took the national championship, the league established a rule: no Americans. I think it was a more general “no foreigners” rule, but she was the reason for the rule.
- Mom returned to college in her 30s after we moved back to the US. She played on all the teams. It was her senior year, basketball season. She was the older woman in a league of 20-somethings. Mom stole the ball. She was wickedly good at dribbling the ball right out of your hand. This woman from the opposing team wasn’t having it. She grabbed mom by the arm and thrust her down. Mom was out for the rest of her senior year, arm in a cast. I remember doctor visits and bone spurs. But she was steel, cheering her team from the bench at every game she couldn’t play.
Can’t we stop? Stop this careening, this fall? Where are the referees to call this rough game? It’s unfair to grab a mom by the arm and snap her like that.
Mom still shows up, even if she’s benched. She fights hard because she doesn’t like to lose. She wags her tongue, “I don’t know what I’m saying,” as she fights for the words, as we fill in the blanks.
I listen to and read stories about other Alzheimer’s victims. They have common threads, but the patterns are singular. Mom’s story is uniquely hers.
I wondered, Why is she still telling us “I can’t find the word”? but I get it now. This is how she loses: not without a fight. Even if she can’t win all the points, she’s holding this damned disease back with every muscle she can until they call the game.
It’s hard for all of us.
Some days, after my heart drops to the floor, and I collapse into a groan of sadness, I kick my heart to the corner. What’s wrong with you!?
Sure, it’s shocking to come back every two weeks to mentally assess what’s gone, but Dad is witness to every drop that spills, every piece that falls away, waking next to her in the bedroom, watching her struggle to dress in the bathroom, helping her prepare dinner in the kitchen because she no longer can. He watches this show live. He sees step-by-step the dismantling of her beautiful energy.
I pick my heart up from the corner, coddle it a bit. This is stressful, but we’ll get through it.
Losing is hard.
I’m not the first to ask myself, Would it be harder if I lost her all at once? Boom! Heart attack. Snake bite. Car accident.
But who am I to compare?
Losing is hard no matter what.
Sudden is tangled in regrets and things unsaid. Gradual is woven with threads of impatience and anger.
And how can we compare experiences?
Losing is hard whether you’re the one who slept next to her for sixty plus years or whether you’re the one who looked up to her for nearly as many.
I kicked my heart to the corner today because I’m not always easy with this. I fall short of heroic, but I can hold space for forgiveness.
Forgiveness for myself, as I breathe through the grieving sob that numbs my thighs.
And for my dad? For my dad, space as he rises and collapses day-after-day next to this disease, empathy when he kicks his own heart to the corner, grace when he needs time to recover energy for the next steps.
She’s not going down without a fight.
We’ll come to a day when all of her words are blocked by the gravel in her throat and the fog in her mind. Maybe I’ll need a moment to curl into my thighs and sob, maybe I’ll take it. But on that day, I want to be her hero. I want to show up like she did in her cast for her teammates. I want to sit next to her on the patio, hold her hand in the long stretch of silence between the lawn chairs, even if we can’t both be in the game. I’ll cheer her on. I’ll point at the bats for her as they fly into the dusk.
Losing is hard.
Losing is a lot to live through. But who she was and what she will always be in my heart are more.
©Pennie Nichols. All Rights Reserved. 2021
Ah. The human condition. Alas. i feel you, Penny.
This was so hard to read, yet beautiful. Thanks for writing and sharing this.
Praying for you as you walk through this journey with your mother. She is to be admired for her strong spirit.)
Thanks Merri Beth
Pennie, this is one of the sweetest, gentlest treatises on Alzheimer’s I’ve ever read. My heart aches for you and your family.
I lost my Mama by inches 19 years ago. The brilliant mind shrouded. The active, fighting body slowed. She, too fought to find the words. Fought to maintain her independence. Fought. Eventually, the disease won, but with it’s dimming came grace. She gently slipped into the fog, then slipped from life. But somewhere, I know she glows with life and activity. That is what I cling to now.
Thanks, Diane. My heart goes out to you having lived through this.
Everything about this post touches me. I went through this with my mother. You are loving and giving and understanding when it is hard to get out of the car, to leave your own life behind and once again enter into these challenges. WHAT IS THIS? There is no definition. There is pain and remembrance and at the final moment there are always blessings. But the journey makes you question everything.
Thanks for your kind words, Beth
Sounds like you’re doing everything you can for your mom. You’ll have no regrets and that’s a wonderful thing. So many people go through this, and yet each story is unique and different. Prayers to you and your family.
I look forward to the future with such trepidation, will I be your mom? Will my husband? Getting older is a blessing, but with it comes change and loss. I’m not sure how to face that…I’m not sure how to go forward. So I will just follow your lead. We will get through it, you are teaching the rest of us what getting older is like…and how to handle it with Grace. You are leading me..and you are doing what you always tell me…take what you are given and learn from it. I will
That’s really the best we can do.
You tell your mom’s story so lovingly. I wish for you and your dad as much self forgiveness as you need. Y’all are such good caregivers, and I know that your mom benefits from your loving care. Your heart is too big to be kicked into the corner.