Mom and Lucy, her youngest grandchild, have a striking physical resemblance. Hair color, eye color, facial structure, the smile–they almost look like twins that happen to be sixty-seven years apart. They share a similar life-of-the-party personality, too. And recently, dementia gave Mom and Lucy something else in common.
In 2019 and my remote caregiving reality, Good Friday was a travel day. I spent the early morning hours in the car making the three hour drive from home to Mom’s assisted living community on Cape Cod. Traffic was heavier than normal thanks to another round of Bourne Bridge construction, but I didn’t mind.
I was excited to pick up Mom and the time alone with my thoughts was welcome. After picking up her medication and chatting with some of the staff, Mom and I were ready for the three-ish hour ride home for Easter and on our way.
We began the ride talking about a random assortment of topics as we always do. In no particular order, topics included: Dr. Phil (seriously), Mom’s Assisted Living friend (he’s still in the picture), her brother, the kids, and the weather. Mom seemed to be in great spirits and excited to see her grandchildren.
She took a brief snooze and after a stop to get her a cup of tea, I noticed it. Mom was reading everything aloud. She was looking at the paper cup in her hands like she’d never seen one before and reaching each and every word printed on the cup. Aloud. First it was the cup, then it was every road sign.
Road Work Ahead Route 495 North, Straight Ahead
NH Route 101A, Right Turn
Amherst St, Right Turn
On and on it went. Lasted the entire trip. Everything she could get her eyes on, she read. I’d never heard her do this before so it caught my attention. But the actual sound–the low voice dripping with uncertainty and utterly devoid of confidence was like a spike through my heart. She’s testing herself I thought. I was processing my speculative but emotional response to what I was hearing and decided it was best to just let it be. So that’s what I did.
Grandchildren = joy
I drove and Mom narrated the remaining two plus hours until we pulled into the driveway. The sadness of this new milestone in dementia’s cruelty to Mom was stamped out by the kids sprinting to the car to say hello–and Mom’s reaction. I’m convinced that in that moment, her smile would have lit up the Empire State Building. I wished I could freeze the moment in time.
How could I not? Mom, like most grandparents I suppose, has a special bond with her grandchildren. They were her pride and joy before dementia tightened its grip on her and still today they light her up like nothing else can. It is the joy of all joys for me to watch.
After getting settled, I couldn’t help but notice that Mom’s reading didn’t stop when we got out of the car. In down moments, she’d pick up a magazine and read it aloud. If the TV was on, she was reading whatever letters were on the screen.
Scared for Mom
In a quiet moment when no one else was around (we were on our way to get our nails done, ha!), I finally worked up the courage to ask Mom about it. Looking back, I’m not sure I’d do that again but it just came out.
Me: Mom, I couldn’t help but notice that you’re doing a lot of reading out loud. Is there a reason you’re doing that?
Mom: Oh, you’ve heard that?
Mom had a slightly embarrassed look on her face and I immediately regretted my decision. Shouldn’t have gone there, I thought.
Me: No, no, no. It’s ok, I’m sorry if I embarrassed you with that question. I’m really sorry. I didn’t mean to. With your dementia, it’s important for me to keep an eye out for new behaviors. Because they can be signals telling us new things we need to account for in supporting you. I like your reading, I just want to be sure you’re ok.
Mom *tears glistening in her eyes now and turns to look at me: I’m afraid I’m going to forget how to read. So I practice. There’s so much stuff I can read. It’s good practice.
Me: I can’t imagine how that feels Mom. Keep practicing. And remember, it’s your dementia making you feel that way, it’s not you. It’s your dementia doing that.
We pulled into the nail salon and sat there for a bit. Mom reading a AAA Magazine from 2017 that she found in the door pocket. Me, listening and feeling scared and more than a bit sad for Mom. After a few minutes I’d collected my thoughts and we headed in.
Lucy and Mom
Lucy is the youngest of our kids at six (going on fourteen) years old. She is, shall we say, an emerging reader. We’re not sure yet if she actually likes reading or if she’s just determined to be able to do yet another thing that her sisters can do, but she is always reading these days. Picture book, Bob Book, one of her sisters’ chapter books, magazine–it doesn’t matter, she’s trying to read it. Aloud.
So here we were on Easter morning. It was a typical weekend morning. Steve was sitting with his breakfast and the paper at the kitchen table while Maggie circled him waiting for food to hit the floor. Lindsay was making last minute preparations for the egg hunt, and I was cleaning up the kitchen from breakfast. Immersed in what I was doing, I heard it when I turned the faucet off.
Mom on one side of the couch, staring at the TV screen and reading what she saw. Lucy cuddled into her with book in hand, reading so everyone could hear. Both were laser focused on what they were doing–Lucy determined to become a reader and Mom determined to stay one — and they were a picture of contentment.
Contradiction and a choice
The sight of them looking like intergenerational twins, and the sound of the chorus they were making, was simultaneously beautiful and agonizing. I didn’t know whether to cry or smile–and time seemed to stop. It’s crazy how a singular moment can be so contradictory, but this was certainly that.
Hearing Mom’s reading brought me right back to our conversation — she’s afraid she’s going to forget how to read — and thinking of that makes my heart hurt. I can’t imagine how that must feel for Mom and it physically pains me to think about it.
But along with the pain and sadness of the moment, there was beauty in it. Their mutual contentment was more than uplifting. Dementia couldn’t take that. It made my heart flutter with gratitude.
Further, Mom’s determination was on full display. Her reading seemed innocent enough but it was the signal of her quiet fight to live her best life. Her words might have lacked confidence or certainty, but they were a clear sign of her determination. It filled me with immense pride.
So I swatted away the agony and rejected the cry. I focused on the beauty and chose to smile. Dementia gave Mom and Lucy something new in common. If I focus on the what, why, and how– it’s sad. So I don’t.
Instead I’m taking it for what it is. A lovely gift.
Can you relate?
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