Last week’s post began with a statement of the obvious: Alzheimer’s changes almost everything about the daily lives of those who live with it and those who care for them.
The temptation is to assume that changes in small matters have less impact on quality of life than more dramatic ones do. For example, it’s easy to imagine that the inability to recall the name of a spouse will take more of a toll on a loved one with Alzheimer’s than, say, a sudden aversion to a hairdresser.
Assumptions can be dangerous.
Caregivers have the burden of watching, closely, in any circumstance. Matters that appear trivial to us may be a source of extreme anxiety, or even injury, to a loved one with Alzheimer’s.
When I arrived this morning, Mom sat sipping tea with a floppy brown hat on her head. Mom doesn’t wear hats. What was this about?
Her explanation, “Daddy got this for me,” didn’t tell me much, so I looked to Dad.
“Your mother asked me how to cover up her head, so I got her one of my hats,” he said. Then, turning to Mom, he fairly shouted, “Show Kathleen your hair.”
Mom looked back at him. Said nothing. I expected Dad’s shouting would make her angry, but no. Her face held no expression at all.
“Show Kathleen your hair,” Dad repeated, “—what’s left of it.”
Now she remembered. Sadness wandered across Mom’s face and she laid her hand gently on top of the hat. “Oh, no, Daddy. No. My hair is ruined.”
“I’ll say it is!” Dad was shouting again. “You cut it all off!”
Mom’s anger struck like lightning. “Look, Child,” she said. “Just look what Ima Jean did to me!”
She lifted the hat for a second, then jerked it back down. But what I saw in those seconds explained Dad’s anger. It was born of fear. Mom hadn’t cut her hair—she hacked it.
As I stared, Mom pulled the hat off again and threw it across the room. In most places her hair was about half an inch long. In random patches, tufts of maybe an inch stuck out or cowered against her head. Her scalp was visible in long gashes and at odd angles. There was no hair at all around her face—nothing across her forehead, nothing around her ears.
I stood and leaned over her, looking for cuts on her head and neck. How could she have gotten the hair so short without catching her scalp in the scissors? But I saw no blood.
“Ima Jean? Ima Jean had nothing to do with this!” Dad’s words still bounced around the room. “You did this!”
Gradually the story came out. When I left their house yesterday, Mom and Dad were talking—arguing—about her hair. Dad went outside to water the plants, get the mail, fill the bird-feeder. To escape, I suppose. When he came back inside, Mom had left the table.
Dad found her in the bathroom, standing in front of the mirror. I could imagine what he must have seen, but he told me anyway. A massacre. Hair in chunks on the counter, the floor, clinging to her clothes. And Mom, wild with the scissors, grabbing at her head, trying to find more strands to lift up and cut off. Miraculously, neither of them was hurt as Dad disarmed her.
The lamp at my bedside doesn’t relieve the darkness that fills me now. I’ve told the story to my husband. I’ve tried to contact my sister to tell her. I think if I tell enough people, the impact will lessen. I’ll forget the horror and begin to concentrate on what I can do to prevent anything like this from happening again.
But sitting here in bed, a pillow at my back, my hands clutching each other atop an unopened book, the horror remains. My fault, I tell myself. My fault. I know how Mom is about her hair. I should have seen this coming. My fault.
Maybe tomorrow I’ll believe my husband’s words. “No one could guess your mom would do this. It’s no one’s fault. No one’s. Your mom is sick. This is only another symptom. A sign that she can’t be left alone, even for a few minutes. Now you know. Your dad knows. Your mom wasn’t hurt. And it wasn’t your fault.”
Maybe tomorrow I’ll believe him.
Lord, free me from this suffocating guilt. Let me cry it out tonight and make a new start tomorrow. Thank you, Father, for protecting Mom while I learn how to be a caregiver.
This is what the Lord says: “Restrain your voice from weeping and your eyes from tears, for your work will be rewarded,” declares the Lord. (Jeremiah 31:15 NIV)