Elaine Mansfield’s mother was diagnosed with Alzheimer’s in 1995 and lived with Alzheimer’s disease for twelve years. In 1999, Elaine became her mother’s primary caregiver along with an excellent skilled nursing home staff. Elaine believes in defending Alzheimer’s patients from excessive medical intervention.
By Elaine Mansfield
“This is my daughter,” Mom said, pointing at me as she looked at the ambulance driver and his assistant. These men had driven her from Rochester, NY to a skilled nursing facility ten miles from my home. Mom beamed a huge smile. Her Alzheimer’s mask was removed to reveal her old alert self. Her soft white hair was combed and curled. Her cheeks were rosy and her blue dress looked beautiful against her pale white skin.
“Hello, I’m Elaine, Iva’s daughter,” I said to the ambulance team, still amazed that my mother had named our relationship. She had severe Alzheimer’s. She nearly died less than a year before and had only recognized me a few times then, although she trusted me.
Despite the sedative she was given for the trip, she was wide awake, introducing me rather formally as if we were having dinner with the men who had just wheeled her into her new room. Adrenaline does wonders for mental clarity.
After nearly dying from a bleeding ulcer and a tortured traumatic month in the hospital, Mom had been released to a skilled nursing home in Rochester, NY. Her legs had frozen into a fetal position, knees against her chest. She had lost bowel and urinary control and could not walk. She was moved in a lift because of the tight self-defensive position.
The nursing home staff avoided Mom. She was terrified after her long hospitalization and had become a biting, screaming, scratching wild animal trying to protect herself from more pain and invasion. She was also dying of malnutrition since she refused to eat, but a loving young black woman in her 30s became Mom’s hospice aide. Jasmine was with Mom two hours each weekday. Since I lived more than two hours away, I spent all day Saturday with her. Mom’s husband dropped by for ten minute visits, but he didn’t stay.
“She’s a sweet woman,” Jasmine told me. “She just scared.” Jasmine approached Mom slowly, gently and tenderly. “You have to get her out of this nursing home,” Jasmine begged after a week. “Please get her out of her.” But I couldn’t move Mom because her husband was sure she would die soon, so didn’t see the point. It was unclear who had legal authority to do what.
“I can’t, Jasmine,” I said. “I want to, but I can’t.”
“So, what’s her favorite food?” Jasmine asked.
“Chocolate ice cream.”
Jasmine began with chocolate ice cream and expanded Mom’s diet to pudding and cream-filled donuts. Soon Mom accepted bites of pureed vegetables and meats and oatmeal before chocolate ice cream and began to trust this young woman. Mom let Jasmine bathe her, change her bed, and dress her each morning in dresses that opened down the back. Jasmine put Mom in a reclining wheelchair and took her outside or to the bright sun room. She washed Mom’s white hair and set it in rollers before brushing it into a soft fluff.
“Don’t eat so much,” Mom’s husband told my mother. “You’ll lose Hospice support.” I wanted to slug him. Mom ate because she felt loved and relaxed. Who would want to stop her? But as Mom gained weight, Hospice discharged her since she was no longer dying.
“You have to get her out of here,” Jasmine said on her last day. I had no idea what to do.
Within a few weeks, Mom’s husband called. “I’d like a divorce,” he said. “I want to have a new relationship.” He was seven years younger than Mom. I both understood and felt angry, but it was my opportunity. I talked with my brother about it.
“We’ll agree to the divorce, but first you have to put her in my care so I can move her close to me, and you have to stop contesting power of attorney,” I told her husband. (My mother had given my brother power of attorney without telling her husband.)
He had to think this over.
“OK,” he said in a few days. “You can move her.” We arranged the move to Seneca View Skilled Nursing in Montour Falls, NY. Mom’s husband drove behind the transport ambulance and kissed her goodbye. I shook his hand, knowing we wouldn’t see him much.
I was still my mother’s daughter. This was my chance to bring happiness and healing to both of us.
About Elaine Mansfield
Elaine Mansfield writes about love, loss, and continuing bonds on her website. She is a writer and Hospice volunteer, leads bereavement groups for women who have lost a partner or spouse, and writes for the Hospicare and Palliative Care Services of Tompkins County newsletter and website.
Elaine’s impressive website includes her expertise on bereavement, nutrition, bone health, exercise, caregiving and healthy living. You’ll enjoy her weekly blog on these issues.