Some people use the stuff that life hands them to create magic and beauty, while others see only despair and tragedy. Dr. Jennifer Bute is one of the magicians.
This video cartoon, developed in collaboration with Bute’s family, is narrated by her daughter Allison; it’s perfect for starting a conversation about dementia with young children:
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My grandfather Edward Eustace and my grandmother Mary Margaret Kell Eustace circa 1942
Flashback November 5, 2015: To mark all saints and all souls days 2015, I went to a remembrance celebration at the Unitarian Universalist church in the village. I told Mom about it as I did her nails the next day.
“I went to a nice church service yesterday Mom,” I began.
“You did?” It was more of a confirmation than a question. “That was nice eh?”
“Yeah,” I said. “It was all about remembering people who had passed on. People who had died. It was kind of like a funeral, except for a whole lot of people, not just one.”
“Oh geez,” she said. Death can be a little disconcerting. Talk of funerals may not be so cheery.
“Yeah, but it was nice.”
“Was it somebody th th th th th th th th th th…that I knew?” she said, and then, before I had time to answer, her intuitive clairvoyance kicked in: “No I didn’t know them. I don’t think I knew them.”
“You’re right, Mom,” I said. “I didn’t know any of them. None of them. But that didn’t matter. People talked about the people who were important to them. They talked about fathers, husbands, mothers, grandmothers.” I held her right hand in mine, and applied bright pink polish to her nails as I described what had gone on. “Some talked about strangers. Some talked about children. One lady told the story of a young friend who had been killed with her husband and two children in a car accident. They were so young she said. Everyone who spoke told the stories of different people they loved and appreciated.”
“Oh dear.” Mom sounded a little worried
“I was going to get up and talk about Gran.” At the mention of Gran, she quickly grew more calm.
“Oh that was nice eh?” She said.
“But in the end I didn’t. I’m not sure why I didn’t, but I didn’t,” I mused. “I thought about her though.” I looked up from Mom’s hands and into her eyes as I spoke.
“Poor gran, usually they had them all… They had them… All… Da da da da da da da da da da da da da da da da da…” The cook came in with the tea trolley.
“I’ll fix our tea in a minute, Stacy,” I said to the cook.
“You’re in mid-paint,” she chuckled.
“I am.” I smiled back. I had brought a couple of boxes of apples the day before; Stacy had used them to make apple crisp and applesauce. She’d saved a little of the sauce for me in Mason jar. Mom and I used to make jam, basil beans and dill pickles together in late summer; we preserved them in Mason jars.
“The only thing I put in with the apples is a bit of water, some sugar, and some cinnamon–so the applesauce is pretty clean,” she said.
“Thanks,” I said.
I turned back to the manicure and my storytelling as Stacy left the drawing room. “I remember the way Gran always used to say ‘Oh hi Sue!’ whenever I called, as if she were surprised to hear my voice. We used to have these long conversations about life and death and all of that and I remember her telling me that her husband–your father–never saw her naked.”
“Oh dear. Oh dear. That was awful. Poor soul.” I laughed, but I could see Mom was little uncomfortable, maybe at the thought of her mother being naked.
“I wondered how she ever got pregnant,” I said with a grin and tease in my voice. Mom looked at me. She must have died a thousand deaths when she told me about “the birds and the bees.”
“Oh I don’t know, she had la la la la la la la la la la la la la la la la la…” Then as clear, sharp and bright as the North Star she said, “She loved my Dad! She just loved my Dad.”
“Yeah she did,” I agreed. Grandpa had died when I was less than two. But I’d heard so many stories for such a long time that I knew she spoke the truth even though I had no recollection of seeing my grandparents together.
“So so so so so so he was he was a ka ka ka — he was her darling.”
“Yeah he was.” Something cracked inside me.
“So he wanted that one very much so,” she said.
“Yeah, he did,” I whispered.
“He liked her. Oh yeah. Very much so. But then he went to ga ga ga ga he got very close to her.”
“Yes. Yes he did. That was nice eh Mom?”
“Yeah. That was nice.” I fell quiet for a moment or two. My tears dropped between her fingers as I tried to paint her nails in a blur.
“So he always looked at her best. Best of some,” Mom said.
“Yup,” I squeaked out. “It was good that they found each other eh Mom?”
“Yeah.”
“I feel a bit sad Mom.”
“For Gran you mean?”
“No, Gran’s okay now.”
“Gran’s okay now is right.”
“She’s with your father.”
“Yeah she’s with Daddy now. He would la la la la la la look look look look well with her.” He would look after her is what she meant.
“Yes he would Mom.”
I choked a little, and then blew gently on her fingertips to help them dry.
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My Alzheimer's Story 