“Kill me first. Just kill me. I don’t want to be one of those la-la land people. You make sure that I am dead,” my mother told me.
In the end, Alzheimer’s quietly took her life, but during the years that she struggled with Alzheimer’s, she became increasingly paranoid and aggressive.
I received a call from my parents’ assisted living facility. Dad had fallen in the shower, and as the day wore on his back pain increased until it hurt to breathe. It was late evening when we finally got him to the crowded emergency room. Dad was gasping in pain. He could barely walk, so we found a wheelchair for him.
The doctor ordered X-rays and Dad was wheeled to the lab. Mom and I sat side by side, crammed in a corner of the tiny exam room on hard plastic chairs, our shoulders touching. Restless from sitting, I got up and paced the small space for a few minutes, then sat down again next to Mom.
I offered her a dog-eared copy of People dated the previous year. She shook her head and turned away from me, letting me know she wasn’t interested in conversation. She stared at her thumbnail and picked at the cuticle.
Slouched in my chair, I counted a total of sixty-three ceiling tiles. I was halfway through counting the floor tiles when Mom spoke.
“I pushed him,” she said, staring past me at the blank wall behind the exam table.
“I pushed him,” she repeated. “He made me so mad. I shoved him. He fell.”
Five days later, Dad died.
* * *
Soon after, Mom went insane; her paranoia became extreme. The director of the assisted living facility called.
“Your mother is a fire hazard. She’s hoarding and she’s stacking all of her purchases against her wall heater. Her room is filled with rotting food and she won’t let the staff in to clean. She has to leave before she harms someone.” I agreed that Mom needed the safety of a confined memory care facility.
My heart broke for Mom. I had so hoped that she would have settled into her life in assisted living; it was so plush and had so many activities, and they took such good care of her and Dad—that is, when Mom let them. But her manic episodes and escalating violence meant that she could no longer live unsupervised. Her escape attempts, her unsafe behavior, what she did to Dad, and all the money she spend, lost or gave away, snuffed out that hope. She was eighty-nine and would be in a memory-care facility for the rest of her life. Alzheimer’s changed everything.
On the day of Mom’s move from assisted living to the memory care facility, I drove her to an adult daycare center. I knew that Mom would become confused and panicked if she was present while we dismantled her assisted living apartment. Having her at an adult daycare facility would be a safer option than risking an emotional meltdown. She had heart disease and had a history of TIAs, so I did not want to risk triggering a heart attack or stroke.
My husband had Mom’s key, so he let himself into her apartment while I drove her to the adult daycare center. Our plan was to move her things, as much as possible, to the memory care facility. We had until 3:30 to do all of this before we had to pick her up.
Back at Mom’s apartment, I found my husband standing in the middle of the living room.
“Sorry,” he said. “I know I need to get moving, but I actually don’t know where to begin.” He turned three-sixty with his arm outstretched. “Where does one start?”
I walked over and stood next to him.
“I’ve been standing here since you left,” he told me. “I honestly don’t know what to do.”
We were both devastated that we had to do this yet again, never having quite recovered from the multiple times we’d cleaned up after her before. We had been sure that things would be under control for her in assisted living, but because she had rejected assistance, here we were again cleaning up Mom’s fundamentally unbelievable mess.
“Maybe we should start by opening a window and turning oﬀ the heater,” Doug oﬀered.
“OK,” I said, glad for any suggestion. “I bought new sheets, mattress pad, towels, and other bedding. All that stuff is in the car, so we don’t need to find any of that. We can strip Mom’s bed and put the mattress, headboard, box spring, bed frame and her chair in the truck. After that… I don’t know. Her dressers are filled with junk and garbage and her clothes are strewn here and there. We have to empty all of the dressers, find things she needs, and then pack them into the dressers. Right?”
In some places, we were hip deep in shipping boxes that had never been opened; stuffed animals, books, magazines, and catalogs were everywhere. And we fully knew we had to sort through everything—veterans of too many treasure hunts by now. Mom’s wedding ring had gone missing again. Once I had found it in a trashcan. And all those one hundred dollar bills lurked everywhere, stuffed in magazines, old purses, books, and in jacket pockets.
We couldn’t reach her dressers—there was too much stuff barricading them. Candy was everywhere. We stepped on it and sat on it and smelled it and threw it at each other, and all the while the clock was ticking. We had to allow enough time to move Mom’s things to her new place and have it all set up for her before I picked her up from the adult daycare center. By noon we were tired, dirty, and frustrated. We had filled the facility’s dumpster, so we started bagging up trash and garbage and setting it against a wall in the bedroom knowing that we’d have to return the next day to clean out the rest of her things.
I chose clothing that would be for indoor living, knowing that she would never go outside again except to walk to a car for a medical or dental appointment. Doug removed her stereo, TV and most of her wall art.
By early afternoon Doug and I were moving like tree sloths. We stopped for a water break. To the right of the small kitchen was the apartment’s vestibule. The entry door was propped open with a painted rock so we could get some air circulating. We were surprised to see three sweet faces peeking inside, some of the other residents.
“Oh, hi,” I said.
“We tried to make friends with her,” one of them said.
“Yes, I ’m sure you did. She was hard to get to know,” I replied.
“She would stand at her door and wait, and make your dad wait, too, when he was still here,” another one said. “She’d wait until everyone had gone into their rooms before she would open her door.”
“And she always walked behind us when we went down to the dining room,” said another. “She would never stay for the games or the songs or just to visit.”
I thanked them for trying to be my mother’s friends. They said were sorry that she had to move. When we carried our last load into the truck, the same three ladies were sitting in comfortable lounge chairs on the huge front porch.
“We weren’t sure you’d get it all in,” one of them said. “She sure had a lot of stuff!”
Mom was leaving a seven-hundred-square-foot apartment and moving into a one-room place with a sink and a shared bathroom. She had complained bitterly about having to live nose-to-nose with my dad. I was sure that she would hate the new place.
The director of the facility told me to stay away for a while—maybe two weeks—so Mom could adjust to her new surroundings without me. “If you’re here each day, all she’ll focus on is pressuring you to move her somewhere else. She needs to settle into her new life.”
I surrendered to the voice of experience.
* * *
I have to type in a four-digit security code to enter the residence area of my mother’s Alzheimer’s facility. Several times a week I carry in a small tray: one house coffee with half-and-half, and a mocha single shot with extra whipped cream and a straw.
I knock softly before entering her small room. She’s in her recliner next to a window, sleeping, her head tilted back on a pale blue neck pillow. Her mouth is open and her hands are resting on her thighs. As the door clicks shut, she wakes up.
“Did you bring me chocolate?”
“I gave five bags of chocolate to one of the aides,” I tell her.
She looks disappointed and leans forward in her chair.
“Why not give them to me?” she asks.
“You can’t have food in your room when you’re alone, Mom,” I say. “They won’t let me bring it in here, remember? But all you have to do is ask one of the aides and they’ll bring you some.” I remind her that she has swallowing problems and she can’t have food in her room without an aide present.
“The coffee here is so lousy,” she tells me when I hand over the hot drinks. She sips her mocha first, as it’s the coolest. She’ll sip at her house coﬀee when I’m gone, then let it sit until the cream is clotted and it has to be tossed out.
The window next to her chair oﬀers views of the wide Willamette Valley all the way to the Cascade Mountains, but the vertical blinds are closed. I sit across from her on the corner of her twin bed so she can see me. If I’m out of her visual range, she forgets I’m here.
“So, what’s going on?” she asks, slowly coming out of the grogginess of her interrupted nap.
“Not much. Everyone seems to be fine.”
“Say,” she says. “I’ve been wondering what I could have out of my storage, to have here, something of mine that I can enjoy.”
I look around her small room. It’s crammed with her things: a dresser, desk and chair, twin bed, the recliner where she sits, a table, and a tall maple lamp with a large white shade. There is no space to add anything else.
“Sure, Mom,” I say. “Tell me what you’d like to have and I’ll get it out of storage for you.”
She looks around her room, seeking ideas. On the wall above her hangs a pastoral scene of a pond. There is a sepia-toned photo of Mom and Dad on their wedding day and photographs of Mom’s mother and sisters. Her six-drawer dresser has a harvest-gold towel draped over the side facing the heating vent on the wall.
“The hot air from that wall vent is burning it,” she tells me.
She won’t let me remove the towel, although the dresser is three feet away from the vent and quite cool even when the thermostat reads eighty. I don’t bother trying to reason with her, tell her that the towel is more flammable than the hardwood beneath it.
“It’s not hot, Mom,” I say to reassure her.
“It’s hot inside,” she replies. “My clothes are hot … they’re cooking.” She looks confused. “Oh, just leave it.”
We sit quietly for a while, her wheezy sips on her mocha straw the only sounds in the room.
“It’s very dark in here,” I say. “Shall I turn on a light or open the blinds?”
“No. I like it dark.”
“You’re missing a great view of the mountains.”
I hear her swallow. She ignores my suggestion to brighten the room.
“Well,” I tell her, “I should go.”
She doesn’t reply. I linger a few more moments, picking up a soiled paper napkin and collecting the plastic water cups she uses to chase down nasty-tasting medications. Because of her difficulty swallowing, her meds have to be liquefied, compounded and mixed with pureed fruit, and administered by a medical aide. The pulverized brew makes her eyes water.
“Say, can I have my purse?” she asks, moving to sit on the edge of her chair.
“Sure Mom. I’ll bring it next time.”
Every time I visit she asks for her purse. I tell her “sure,” her shoulders relax, and she sits back in her recliner. I’d never imagined that being a caregiver would encourage me to be such a liar, but I find I’m quite good at it.
Mom’s purse is one of the many things she can’t have anymore. She never remembers she’s asked for it, and each time I show up empty-handed. Having a purse had given her hope of leaving this place and returning to a normal life. It could hold all the things that meant she could manage her life: money, a checkbook, a credit card, car keys. At first I’d gone with her caregivers’ suggestion that I give her an empty purse so she could put items such as lipstick and tissue in it. But she quickly became obsessed with filling it with things that contained the hope of independent living, and her nagging for them was relentless. It was easier on everyone—not least me—if she didn’t have a purse at all.
There is no point in telling her what she can no longer have. To avoid her inevitable disappointment, I just assure her I’ll have it next time I see her.
I move across the room to her closet. Half of it contains her shoes and clothing. The other half contains bedding, towels, personal-hygiene supplies, and latex gloves for the nursing aides to use when they help her shower. I always check the inventory, as Mom never knows what she’s out of. Looking over her stock of Polident, Depends, and toothpaste, I say, “I see that you don’t need anything for now, Mom.”
“Next time you come, you bring me chocolate,” she says.
“OK, I will.”
Picking up my coat, I take one last look around the room to see if there’s anything that needs my attention before I leave. Finding nothing obvious, I am, as usual, happy to be going. Mom’s room is so dark and far too warm; I become claustrophobic if I stay there for too long.
“’Bye, Mom. I’ll see you in a couple of days.”
I type in the security code to exit the residence area. Mom no longer follows me to the door like she used to, pushing me from behind and demanding to know when she can get out of there. She no longer pounds on the doors that lock behind me, yelling “Let me go! You let me out of here!”
Maybe it’s the progression of Alzheimer’s, or the medications she takes have helped to calm her down, but Mom has changed since she first came here. “She won’t always be like this, so angry and so violent. She is paranoid and the antipsychotic drugs should help her relax. But Alzheimer’s can change her personality,” Mom’s neurologist told me.
The neurologist also told me that Alzheimer’s is always fatal.
At the reception desk I sign out and wave good-bye to the staff. I draw in a deep breath of fresh air as I walk out the door.
* * *
My mother died on a sunny afternoon while taking a nap, just two days before her ninety-third birthday.[boxer set=”peck”]