It’s just after 1 a.m. The alarm goes off. “Motion detected.” She’s out of her bed.
I sit up and grab my phone and open the app while putting on my robe and slippers. I sit on the edge of my bed and watch her via the camera we have placed on the tall bookshelf in the corner of her room. I’m hoping it was just lightning from the storm outside that triggered the alarm.
Nope, it’s not a false alarm. She’s up. She’s making her bed. In the dark. Her broken brain doesn’t tell her to turn the bedside lamp on.
It is eerie seeing her white hair and glowing eyes on the infrared display as she moves around her room.
She walks to the door. She opens it and looks down the long, dark hallway. She nudges the safety gate we placed across the outside of her doorway. It’s snug, but she could knock it down if she really wanted to. Nudging it with her thigh reminds her broken brain not to leave her room at night. It works as designed tonight. She turns away. She doesn’t knock it down or climb over it as she’s done on the past.
I watch as she shuts the door and looks around her semi-dark room. She’s confused. She doesn’t know to do now.
I wait and watch and wonder. Will I have to walk down there to remind her how to use the toilet? Will she remember where the bathroom is? (There are two bright nightlights on either side of the bathroom door.) Will she find the toilet? Or will she simple get back in bed, only to wake up again in an hour?
She remembers the way to the bathroom this time. Whew. I may not need to go down there after all.
She takes her time. I know she’s finished using the toilet and is now brushing her teeth. I could see her shadow under the bathroom door. She at the sink, brushing her teeth. She does it every time.
- Go into the bathroom
- Pull your pants down
- Sit on the toilet
- Wipe. Front to back
- Put the toilet paper in the toilet
- Get up and pull your pants up
- Wash your hands with soap
These are the instructions I give when needed. When she can’t remember how to use the toilet.
Her brain adds, “Brush your teeth” when she’s standing at the sink. So she brushes her teeth. Every time. Five or six times a day. Even in the middle of the night.
I wait. While she brushes her teeth. There are worse things than brushing your teeth six times on one day.
The bathroom door opens. She stands there. She looks around. Then goes back in the bathroom. She turns off the bathroom light. She comes out, shuts the door, and looks around. She opens the door and turns the light back on. She stands in the doorway. She turns the light back off. Then on. Then off. Then on. Then finally off. And walks gingerly to her bed.
Now she turns on her bedside lamp.
She craws into her freshly made bed, pulls up the covers, and goes to sleep. With the lamp still on.
She’s pottied. Her teeth are clean and breath is fresh. She’s safe in bed. Asleep.
And I’m sitting here on my bed at 1:37 a.m. thinking once again how hard this is. For her and me. I want to give her independence where I can while helping when needed. I want to keep her safe. I want to respect her privacy. I want her to sleep through the night. I want to sleep through the night.
But mostly I want her as she was before this disease. Smart, funny, generous, kind, and able to do just about anything she set her mind to doing. I want her capable of going to the bathroom in the middle of the night without me watching to be sure she’s safe. Yes, want her to be like she was. But this is who she is now. I have to accept that.