As the disease progressed, mom’s agitation escalated, especially at the end of the day. The lack of control is scary, for her, for those who are with her.

©Pennie Nichols. All Rights Reserved. 2023

“I’m scared!” She raises both hands and shakes them at her reflection in the mirror.

“It’s OK. I’m here. You’re just tired. Let’s go to bed.”

She’s said this at other times, but reflecting on it, mostly at sunset. This is her her sundown experience.

SundownSundown syndrome: increased memory loss, confusion, agitation, and even anger, experienced at sunset.

I’m not sure what scares her.

What did I forget to do? as she brushes her teeth a third time.

Where should I go next? as she applies something to her skin, not always the right thing.

I reassure her she’s ready for bed, and she leaves the bathroom reluctantly.

This morning, I wake up, and it hits me: she’s afraid she won’t wake up.

A couple of years ago, I took mom to the hospital to visit her sister, who was battling her own Bull: the cancer bull. Most visits, my aunt tread in the positive, splashed around pools of hope. That day, she broke down.

“I’m so scared.”

I sat next to her. I didn’t know what to say. It’s all right, would be stupid. It wasn’t all right. I took her hand and said “I know,” even though I didn’t. How can we know the chambers of another person’s mind, the dark corners that terrify them, the dance of shadows that confuse them?

It’s OK.

What dribble from my lips! It’s not OK. Sure, I’m here, but dark rooms in her mind are not OK. Of course she’s scared! Who wouldn’t be?

Tucking yourself into bed befuddled. Sleeping in fits and starts, startled by ghosts of thoughts, fuzzy fears. Are you fighting the ghosts and fears in your dreams, grabbing what broken tools you can find and beating at the phantoms?

Sundown and bed time are scary.

When she goes to bed, she doesn’t roll to her side or curl into a fetal cuddle. She lies on her back, slightly propped, face to the ceiling, chin firm, hands at her sides, sometimes on her abdomen, poised to jump up and fight. What’s that in her clenched fists? Weapons to battle the shadows in her head? What is she thinking as she surrenders her body to bed?

The last night mom was at the beach with me, I reached out and took her hand, one of the hands that a few minutes prior was shaking at her reflection in the mirror to illustrate “I’m scared.” She stayed in her ready-to-fight position, tense, poised. She squeezed my hand and held on until we both fell asleep.

I wish I could sweep into those dark chambers, flood them with light and remembering, clear them of cobwebs and shadows, flush the fears that taunt her. But I can’t. I can’t stop the bull, fix her broken, mend her mind. I can only hope that holding her hand, reminding her I’m here, and finding things to do will quiet the demons, pacify the scary bull that comes at sundown.

©Pennie Nichols. All Rights Reserved. 2021