Curious. Very Curious

What Alzheimer's couldn't take from my sister

The author and her sister

The photo above was taken on the second day of my visit to my sister. She had awoken, given me her smile, and told me how happy she was to see me.

On the first day, I walked into her room, and she was in a state of serenity — the type I imagine when someone has said goodbye to their world, and everything feels in a state of order: Conflicts resolved, gratitude shared, and appreciation for all that life has given. There might even be an acknowledgment of goals unmet, but without regret. Trying counts.

As I stroked my sister’s arm and said, “Lee, it’s Jill here. I am visiting you — all the way from Boston,” her eyes opened up, and she smiled. She clearly knew me, but couldn’t get her words out.

I accepted her reality and suggested we listen to Neil Diamond, followed by John Denver, while she rested, eyes closed. Upon hearing the third Neil Diamond song, “Cracklin Rosie,” my sister’s eyes opened, she squeezed my hand, and then pronounced,

“It’s so good to be back.”

Neil did it, with a splash of me, and it was clear she did not want to leave her world. The words didn’t come quickly, or even in a way that one could understand what she was thinking, but I gathered that she thought she was on the precipice of leaving this world, and it scared her.

Thank God my other sister was there, too, and between us, we could continue to stimulate her interest in life while we tapped along to the beats.

I left after my visit on day one feeling relieved that we were able to share a few precious exchanges, along with music and photos. I knew that photos would elicit a reaction, but to a limited degree. When you spend time with someone who has Alzheimer’s, you realize they have little ability to provide context.

Everything is in the present.

This means when she sees my children with their children, she wonders when I had all those children. “The little ones are my grandkids,” I say, and then she would respond, “Aren’t your kids still in school?”

By “school,” she means middle school or even younger.

I’ve also learned that even when my sister processes something I’ve said in that moment, as in “That’s my son, David’s (not his real name) wedding,” she will know what I said for exactly the length of that sentence. Then, I’ll hear something like,

“Is that you and your husband dancing? And where are you?” I will repeat.

“Oh, that’s David and his wife, and by the way, you were there.” The last part shocks her, and then I show her a photo of herself at the wedding.

The growth in me as her sister is that I have gone past the sadness into acceptance. Sometimes, we even find humor, and I get her to laugh.

I no longer correct her by trying to put her into the right decade.

I no longer think I can teach her something (this is ironic since she spent her life teaching us).

I willingly enter her alternate reality, where she believes she is just back from teaching a group of business professionals or educators, and the topics always center on emotional intelligence and healthy, productive work teams.

Yesterday, I heard,

“Why didn’t you show up at our meeting? And you said you’d bring a poster. You didn’t.”

I smiled and said,

“I can’t keep as busy as you want to make me. I just don’t have your energy.”

That elicited a laugh.

Day two

This was a much better day. I walked into her room as her aide told me she was still sleeping. My sister must have heard me walk in. Of all the senses that don’t work, her hearing is still A-OK.

Her eyes open, and she smiles immediately.

This makes me happy as I ask, “And how are you today?”

Her response, which might be my two favorite words so far in 2026:

“Curious. Very curious.”

I remind her that she has always been curious, and I am glad she feels strong enough to exercise her curiosity.

She laughs. “Well, I am trying to figure out how this world works.”

I took that as a sign that she still didn’t understand her semi-comatose state yesterday.

“Lee,” I say, “You’ve always been our teacher. When you figure something out, please share. We’ve come to depend on that from you.”

I got the squeeze of the hand (her easy sign of love because it requires no words, and words are hard for her).

From there, my other sister — my rock of Gibraltar as we process Alzheimer’s — suggests we listen to Billy Joel. “Billy” is a great choice and a definite mood picker-upper. We listened to his two-hour concert at Shea Stadium while we talked and raved about various moments.

I will now make it my habit to routinely suggest to others that watching Billy Joel at Shea Stadium should be on their bucket list. As I told Lee while she waved her hand to the beat,

“Billy Joel represents authenticity, kindness, and gratitude.”

I thought about my statement and suggested that authenticity and kindness were her qualities, too.

“Are you saying I am weird?” she asked.

“Well, maybe, but in a good way. We all are.”

Another squeeze of the hand.

My thoughts now that I’m back home

I am just back after taking a red-eye, and it’s possible my writing will show the impact of fatigue, but this piece comes from the heart, and I needed to write it.

I walked in, hugged my husband, grabbed a leash to walk Teddy, and then thought to myself, Why are you not more down?

I believe acceptance has come for me in stages, with plenty of pain along the way. But witnessing the quintessential qualities of my sister in full bloom, in some ways more potent — minus her cognition — is something I can live with. Alzheimer’s has not taken everything. My sister still shows me:

Positivity: I heard, “I’m so glad you came,” and not “Why did it take you so long to get here?” She is the kind of person who, on a bad day, would double down to make goodness happen. As a teacher, she might pick a story with an important moral lesson to share with her class. Maybe she’d have her students write something that might benefit friends or family. Lee, as a teacher, was a fountain of hope for better living.

Curiosity: She would always ask so many questions — not out of nosiness, but out of trying to better understand us or a situation. It’s why I loved her first words on day two:

“Curious. Very curious.”

Kindness: Most of us have it in us to be kind to someone, but usually it is someone we know and have a connection to. Maybe on a good day, we are kind to a stranger. My sister was kind to everyone, including many she didn’t know or had only the slimmest of relationships with. We spent the last five years trying to protect her from the many scammers on her trail.

My peace comes from seeing those qualities in full bloom, even if they are hard for her to express.

My sister remains curious, but without many words. She is kind with her smiles and squeeze of my hand. She exudes positivity, gratitude, and love, and she will do this for as long as she is in this world.

This is how I found my peace.