grandchildren – My Alzheimer's Story

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.

When she was diagnosed with early onset dementia, Dr. Bute began using her experience as a carer, a medical professional, and a patient to help people understand more about dementia. She produced a series of helpful videos as well as other resources that explain various aspects of dementia; you can access them on her blog (called “Glorious Opportunity”) here.

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:

The Dragon Story – Full HD from Kreativity on Vimeo.

Download the resources and discussion PDF that goes with the video here.

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*Trigger warning:* beautiful and moving video below. Tissues recommended.

Care partners by the thousands share their joys, sorrows, challenges and solutions in Facebook groups and FB communities–it’s one way to feel connected and be supported by others sailing in similar boats. The posts are both heart-wrenching and heartwarming, often making me laugh and cry at the same time. One of Sherri Sturm’s stood out from all the others. I asked her if she would let me “go public” with it; she generously agreed.

Sherri described what took place, and shared some video clips with me:

“My mom Sharon is in the later stages of Alzheimer disease. Still, I wanted her to meet Wyatt, my 10-day-old grandson, and her great-grandson. I wasn’t sure how she would react, since she appears to have lost the ability to communicate with words. It feels like she doesn’t understand what we say to her, and she seems not to know any of us either.

Mom has always loved babies, and I thought she might enjoy holding Wyatt. I put him carefully in her arms; she immediately and naturally cradled him. When he put his hand near her mouth, I was afraid she might bite it, mistaking it for food. Instead, she kissed it gently, and mumbled to him. When I made a motion to take him back, she clearly communicated with her body language that she wanted to hold him a little longer. These were such beautiful, precious moments:

This experience showed me that we will never know what someone living with dementia at this stage really thinks, feels or understands. My advice? Don’t discount your loved one with dementia regardless of how they appear on the outside. They are still very much whom they are deep down inside. Treasure every moment, and include them in special occasions and life celebrations whenever you can. You will never regret it.”

Beautiful and precious indeed.

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Tag: grandchildren

grandpa drake the dragon teaches kids about dementia

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10-day-old wyatt meets his great-grandma for the first time