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Overcoming the guilt and embracing the gifts of long-term care

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Deborah Shouse
Deborah Shouse

When I was 13, I walked into a nursing home and saw the circle of slumped and snoring wheelchair-bound elders and I thought, “I never want to come into another place like this."

Ten years later, through a series of interesting circumstances, my husband and I were operating an old county home turned nursing facility. It was in the early 1970s and the staff and residents in that home became my family and my teachers. One-hundred year old Sadie showed me the power of poetry; before she had grown completely blind, Sadie had memorized dozens of her favorite verses and often recited them to herself and to others. “These words comfort me and lift me up,” she used to tell me.

Albert, who had been crippled in the war, refused a wheelchair and instead got around by folding his bad leg into a wagon and using his good leg to scoot forward. He taught me the importance of determination, friends and ritual. Every Wednesday, we drove him to the town square where he met his cronies in the diner, reminisced, chewed tobacco and played Pitch. Those afternoons filled him with a week's worth of happiness.

The nurse aides taught me about hard work and kindness: after Susie's shift, she went home to care for her own ailing mother, her three children and a disabled husband. Patty, the cook, volunteered every week at her church to help feed the less fortunate. Evie, a housekeeper, often stayed late to cut and curl the women residents' hair.

These people work experiences taught me firsthand the complexities and blessings of the long-term-care community. But when my own mother, who was sinking deeply into Alzheimer's, needed to move into assisted living, my rational knowledge disappeared. The words she had often said to me flashed into my mind: “I want you to kill me if I ever have to go into a nursing home.”

I knew my father and I could no longer keep my mother safe and give her the care and social connections she needed. But I was anguished and brokenhearted, feeling that I had let my mother down.

Gradually, I released much of my guilt and focused on staying connected with my mother and finding the gifts and blessings in the journey. This emphasis led me to chronicling my experiences with my mom and my dad and with our new long-term-care “families” while Mom lived first in assisted-living, with a brief detour to a psych ward, then moved into an Alzheimer's unit, and finally was transferred into long-term care. My book, Love in the Land of Dementia: Finding Hope in the Caregiver's Journey, emerged from those stories and experiences. Here is a short excerpt:

The Tease

On my mother's first day in assisted living, she causes a little stir in the activities room.

In that beautifully furnished, deeply carpeted room, with its round tables and comfortable chairs, 20 people are gathered to create necklaces. Bright plastic beads are piled in the center of each table. Mom and I sit together, like two kids, making a necklace. Or rather, I am creating the necklace: Mom restlessly hums and looks around.

This is the first time Mom has ever been separated from my father. A mere three months after their move to Kansas City, and Dad can no longer take care of her in their retirement-home apartment—her wandering, her confusion, her all-night wakefulness, and her incontinence, have turned dangerous: she leaves the stove on and the door to the apartment open; she walks out of the building in the middle of the night. Even though assisted living is only one step up from the retirement center, our decision to place her in this home is wrenching. We are simmering with guilt and worried about her feeling abandoned, confused, and unloved. There is not much we could do about her confusion—she is already wading deeper into Alzheimer's—but Dad and I decide to take turns being with her during these first difficult days.

As I happily create a necklace, Mom gets up and wanders to the center of the room. I figure she is going to mingle and talk with people; she has a social nature and I am pleased she is going to make friends. But I am not pleased when I look up to see Mom, blithely unbuttoning her blouse, a naughty little smile lighting up her face.

“Mom!” I say, but before I can stop her, she has dropped her blouse to the ground. Her smile grows bigger. I rush up to her, as does one of the aides. The aide takes off her lab coat and covers Mom up, clasping Mom's hand before she can slip down her bra straps.

“Mom, you can't do that,” I say as we escort my mother back to her room.

“I can,” Mom says, with a little girl sparkle to her voice.

***

Dad wonders where she is when he comes to visit the next afternoon. She is not in her room, the activity room, or dining room.

“They often go into other patients' rooms,” an aide explains and together, they walk down the corridors looking for Mom. They find her asleep on the single bed of George G. Walsh. Mr. Walsh is rummaging through his dresser when my father walks in. Mr. Walsh is a good-looking older gentleman. He is tall, with a wonderful wealth of white hair (my father puts his hand to his own nearly naked scalp) wearing a nice sports shirt and rather stylish-looking khaki pants, bought within at least the last year. My father feels the shabbiness of his own wrinkled white shirt and his slacks, bought at least three decades earlier in a discount department store on Memphis's Beale Street.

“Frances, get up. You don't belong in this room,” my father says.

“She can stay as long as she likes,” Mr. Walsh intones. His voice, as my father must note, is deep and articulate, deeper even than my father's own excellent voice.

The aide is waking Mom up.

“This is my wife,” my father says, forgetting he is in assisted living and that Mr. Walsh might not be the Casanova that he seems. “ Frances, come on,” Dad says, putting his arm about Mom, and with the aide, helping her to her feet.

“Are you insulting me?” Mr. Walsh demands, walking right up to my father, readying his fists. He is tall and now that he is so close, Dad is pretty sure he is strong as well.

Deborah Shouse is a writer, speaker, editor and creativity catalyst.This November, Central Recovery Press is going to publish an updated edition of her book "Love in the Land of Dementia: Finding Hope in the Caregiver's Journey."
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