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Log of my mother's Alzheimer's

Carrying Mom

1:00 a.m. The dyslexic hour. Words on computer monitor start to run together. Squinting. Brain tired. Slumping. Sleep summons. The house has been quiet for hours. My favorite time of day, my “afternoon.” Quiet time. No phones ringing. Work time. Click off the word processor. Enough. Check doors. Turn off lights. Get under sheets.

2:00 a.m. Stare into darkness. I was raised in this house. It has always felt good to be here. It feels different now. I’m downstairs, in what we used to call the basement. My bed sits where the pool table was. Those days were fun. Family. Friends. Band rehearsal. Burgers. Pool. Rock and roll. Laughter. It’s quiet now. No one’s laughing. Quiet.

2:30 a.m. Overhead, on the other side of the ceiling, is a bedroom with a stranger in it. Her name is Esther, but her official title is The Caregiver. A nice, older woman with sad eyes. Down the hall from her is another stranger. Her name is Angela, but I still call her Mom, even though she no longer understands the word. She has Alzheimer’s. Not long ago, Mom owned rental units, ran this household, traveled the world, chaired organizations, spoiled her grandchildren, loved life. Now, she can’t dress herself. She reaches for things in the air that aren’t there, mumbles jibberish at invisible objects of concern on the floor. I’ve moved in to put a steady hand on the tiller. I’m back home. It’s different now.

My mind replays the cruel plot points of this disease. Yesterday, I found Mom staring bewildered at the kitchen clock, as though she’d stumbled into the caves at Altamira. Later, I found her purse in the freezer. During lunch, she suddenly laughed and said to me, “Remember when we used to ride Nellie across the farm, and Daddy would scold us so?” Nellie was the horse from her childhood in the 1920s. She thinks I’m her late brother. I start to correct her but stop.

“Of course I remember. You were Nellie’s favorite.”

“Yes,” she says, pleased.

Before the day’s end, she’d tried to step into the sleeves of her blouse; ran her hands through the cat’s litter box; buried her keys in the trash. I found her offering a drink of water to her own reflection in the bathroom mirror. She couldn’t understand why the woman wasn’t thirsty. “That’s okay, Mom,” I said, gently took the glass from her hand. She started to cry.

The live-in caregivers help. But they don’t last. Been through eight of them in eight months. Calling around. Screening. Interviewing. Hiring. They won’t work nights or weekends. One wants her bedroom painted a different color. Another, Venetian blinds and new carpet. Another, a television, cable hookup, and her own telephone. Fine. Anything. Please help. They all start out like a hybrid of Mother Teresa and the Flying Nun. “I’ll take her shopping, to the movies. We’ll bake cookies together.” In a week, they’re zombies. “She never stops moving. She keeps getting into things. She asks the same questions over and over. She’s wearing me out. I’m a nervous wreck.” One caregiver lasted three months. One lasted six hours.

3:00 a.m. Can’t sleep. Might as well make a list of things to do tomorrow. Turn on light. Grab notepad. 1.Call attorney about conservator-ship. (Don’t understand this stuff — how much will this cost?) 2. Look in yellow pages for pest control. (One of Mom’s tenants called today: rental units have mice?) Also, outdoor lights aren’t working (call electrician) and one apartment has stopped-up sink (call plumber). 3. Call the bank: Got strange notice saying that Mom’s Social Security check is somehow being automatically deposited in a closed account (?!), and they don’t know why it’s happening or how to correct it. Without SS check in regular account, checks will bounce. Need to make some banking changes but can’t without conservatorship (see note 1). 4. Take Mom for appointment with Dr. Permetti. Nice man, very simpatico. Last time, he said I should start looking into a nursing home for Mom. No way, I said. Not while I’m alive. Of course, don’t mention “doctor” to Mom until she recognizes the medical building (freaks her out — she thinks someone’s going to take her somewhere and hurt her). 5. Pick up Mom’s prescription at Kaiser. 6. Start cleaning junk out of back yard. If time, mow lawn. 7. Return yesterday’s phone messages. 8. Try to get some writing done.

3:15 a.m. Turn off light. Start to drift off, feels good. Dog next door starts barking. Not loudly, but rhythmically. Every few seconds. I open my eyes. Start thinking about people. Mom’s “friends” keep calling to ask how she is. A dozen times a day I explain the situation to people I’ve never met. No one says, “If there’s anything I can do ... ” People have heard about Alzheimer’s. They keep a convenient distance.

3:30 a.m. Turn on light. Might as well do some reading.

3:45 a.m. Realize I’ve read the same opening paragraph over and over. Turn off light. Dog stops barking. Now a new noise. A humming. It gets louder. Somewhere near my face. I swat at the sound, and my hand hits something. The humming stops. Turn off light. Humming starts again.

4:00 a.m. Didn’t know I was asleep until I heard the floor creaking overhead. Footsteps. Is The Caregiver just going to the bathroom, or is it trouble? I listen. The phone rings. I fumble for the light switch and carom into the living room.

“Hello?”

“I’m sorry, but your mom got outta bed, and I just found her lying by the dining room window without a stitch on. She’s freezing cold, but I don’t think she’s hurt. I can’t lift her because of this bad back, and — ”

“Okay. I’ll be right up.”

4:05 a.m. Carry Mom to her bed. The Caregiver thinks I’m upset with her. I reassure her that although Mom keeps accusing The Caregiver of hurting her, I know it’s just the Alzheimer’s talking. “Don’t worry, I know you wouldn’t hurt her.” The Caregiver starts to cry.

4:30 a.m. Back in bed, staring into the darkness. Heart beating too fast. Must get some sleep. Can’t work without sleep. Roll over on side. That feels better. Drifting.

6:30 a.m. Dog starts barking again. Something in me snaps. Grab robe, run outside and in one motion hoist myself up to look over wall into neighbor’s yard. “Goddamit, SHUT UP!” Dog cowers, but something else moves in the shadows. It’s the dog’s owner. He’s puttering around his garden at dawn. “What did you say?” he asks menacingly. He’s burly, forty-ish, wears the expression of a guy who’s just realized the one thing missing from his life is a good fist fight.

“I told your dog to shut up. People are trying to sleep, and he’s been yapping for hours.” Guy snickers and puts his dog in the house. I de-hoist. The Caregiver is standing behind me. “I need more sleep than this,” she says. “Between your mother and that dog, I’m just not getting enough sleep.”

“I know. I know.”

Mom, in nightgown and mismatched slippers, sneaks up behind The Caregiver as though trying to get my attention. She looks frightened and confused. “She’s trying to hurt me,” she whispers conspiratorially, gesturing toward The Caregiver.

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1:00 a.m. The dyslexic hour. Words on computer monitor start to run together. Squinting. Brain tired. Slumping. Sleep summons. The house has been quiet for hours. My favorite time of day, my “afternoon.” Quiet time. No phones ringing. Work time. Click off the word processor. Enough. Check doors. Turn off lights. Get under sheets.

2:00 a.m. Stare into darkness. I was raised in this house. It has always felt good to be here. It feels different now. I’m downstairs, in what we used to call the basement. My bed sits where the pool table was. Those days were fun. Family. Friends. Band rehearsal. Burgers. Pool. Rock and roll. Laughter. It’s quiet now. No one’s laughing. Quiet.

2:30 a.m. Overhead, on the other side of the ceiling, is a bedroom with a stranger in it. Her name is Esther, but her official title is The Caregiver. A nice, older woman with sad eyes. Down the hall from her is another stranger. Her name is Angela, but I still call her Mom, even though she no longer understands the word. She has Alzheimer’s. Not long ago, Mom owned rental units, ran this household, traveled the world, chaired organizations, spoiled her grandchildren, loved life. Now, she can’t dress herself. She reaches for things in the air that aren’t there, mumbles jibberish at invisible objects of concern on the floor. I’ve moved in to put a steady hand on the tiller. I’m back home. It’s different now.

My mind replays the cruel plot points of this disease. Yesterday, I found Mom staring bewildered at the kitchen clock, as though she’d stumbled into the caves at Altamira. Later, I found her purse in the freezer. During lunch, she suddenly laughed and said to me, “Remember when we used to ride Nellie across the farm, and Daddy would scold us so?” Nellie was the horse from her childhood in the 1920s. She thinks I’m her late brother. I start to correct her but stop.

“Of course I remember. You were Nellie’s favorite.”

“Yes,” she says, pleased.

Before the day’s end, she’d tried to step into the sleeves of her blouse; ran her hands through the cat’s litter box; buried her keys in the trash. I found her offering a drink of water to her own reflection in the bathroom mirror. She couldn’t understand why the woman wasn’t thirsty. “That’s okay, Mom,” I said, gently took the glass from her hand. She started to cry.

The live-in caregivers help. But they don’t last. Been through eight of them in eight months. Calling around. Screening. Interviewing. Hiring. They won’t work nights or weekends. One wants her bedroom painted a different color. Another, Venetian blinds and new carpet. Another, a television, cable hookup, and her own telephone. Fine. Anything. Please help. They all start out like a hybrid of Mother Teresa and the Flying Nun. “I’ll take her shopping, to the movies. We’ll bake cookies together.” In a week, they’re zombies. “She never stops moving. She keeps getting into things. She asks the same questions over and over. She’s wearing me out. I’m a nervous wreck.” One caregiver lasted three months. One lasted six hours.

3:00 a.m. Can’t sleep. Might as well make a list of things to do tomorrow. Turn on light. Grab notepad. 1.Call attorney about conservator-ship. (Don’t understand this stuff — how much will this cost?) 2. Look in yellow pages for pest control. (One of Mom’s tenants called today: rental units have mice?) Also, outdoor lights aren’t working (call electrician) and one apartment has stopped-up sink (call plumber). 3. Call the bank: Got strange notice saying that Mom’s Social Security check is somehow being automatically deposited in a closed account (?!), and they don’t know why it’s happening or how to correct it. Without SS check in regular account, checks will bounce. Need to make some banking changes but can’t without conservatorship (see note 1). 4. Take Mom for appointment with Dr. Permetti. Nice man, very simpatico. Last time, he said I should start looking into a nursing home for Mom. No way, I said. Not while I’m alive. Of course, don’t mention “doctor” to Mom until she recognizes the medical building (freaks her out — she thinks someone’s going to take her somewhere and hurt her). 5. Pick up Mom’s prescription at Kaiser. 6. Start cleaning junk out of back yard. If time, mow lawn. 7. Return yesterday’s phone messages. 8. Try to get some writing done.

3:15 a.m. Turn off light. Start to drift off, feels good. Dog next door starts barking. Not loudly, but rhythmically. Every few seconds. I open my eyes. Start thinking about people. Mom’s “friends” keep calling to ask how she is. A dozen times a day I explain the situation to people I’ve never met. No one says, “If there’s anything I can do ... ” People have heard about Alzheimer’s. They keep a convenient distance.

3:30 a.m. Turn on light. Might as well do some reading.

3:45 a.m. Realize I’ve read the same opening paragraph over and over. Turn off light. Dog stops barking. Now a new noise. A humming. It gets louder. Somewhere near my face. I swat at the sound, and my hand hits something. The humming stops. Turn off light. Humming starts again.

4:00 a.m. Didn’t know I was asleep until I heard the floor creaking overhead. Footsteps. Is The Caregiver just going to the bathroom, or is it trouble? I listen. The phone rings. I fumble for the light switch and carom into the living room.

“Hello?”

“I’m sorry, but your mom got outta bed, and I just found her lying by the dining room window without a stitch on. She’s freezing cold, but I don’t think she’s hurt. I can’t lift her because of this bad back, and — ”

“Okay. I’ll be right up.”

4:05 a.m. Carry Mom to her bed. The Caregiver thinks I’m upset with her. I reassure her that although Mom keeps accusing The Caregiver of hurting her, I know it’s just the Alzheimer’s talking. “Don’t worry, I know you wouldn’t hurt her.” The Caregiver starts to cry.

4:30 a.m. Back in bed, staring into the darkness. Heart beating too fast. Must get some sleep. Can’t work without sleep. Roll over on side. That feels better. Drifting.

6:30 a.m. Dog starts barking again. Something in me snaps. Grab robe, run outside and in one motion hoist myself up to look over wall into neighbor’s yard. “Goddamit, SHUT UP!” Dog cowers, but something else moves in the shadows. It’s the dog’s owner. He’s puttering around his garden at dawn. “What did you say?” he asks menacingly. He’s burly, forty-ish, wears the expression of a guy who’s just realized the one thing missing from his life is a good fist fight.

“I told your dog to shut up. People are trying to sleep, and he’s been yapping for hours.” Guy snickers and puts his dog in the house. I de-hoist. The Caregiver is standing behind me. “I need more sleep than this,” she says. “Between your mother and that dog, I’m just not getting enough sleep.”

“I know. I know.”

Mom, in nightgown and mismatched slippers, sneaks up behind The Caregiver as though trying to get my attention. She looks frightened and confused. “She’s trying to hurt me,” she whispers conspiratorially, gesturing toward The Caregiver.

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