No one knows how to prevent or cure dementia and Alzheimer’s. And few people know how to be with someone who has the disease which eventually takes their life. I sure didn’t when my mother told me my father had the disease. There just isn’t a manual.
Unlike most diseases that are treatable, hope is not an option on the table. It moves at its own pace, in its own way and the only hope is to come to terms with the inevitable outcome. And to figure out how to be with this person as they are dying.
As the disease progressed and my father became less like the person I knew, I wondered how much time we had left for us to be together.
Every six weeks, every month, then every week, he was slipping in a way that only some medical person could predict. There was no real conversation between two adults. Just me trying to prod or pull him out of wherever he was.
What if I draw you? I asked him as he sat across from me in his lift chair. Yes, he nodded. Every other Wednesday--then every week--I visited him with my drawing pad and dog. I wrote down things he said. Drawing gave us a way to connect--sometimes without words.
The artwork and written snapshots evolved into a body of work that is visual art, poetry and performance art. I call the work Flutterby--the word my father remembered during one of my visits that I used as a child to say "butterfly."
He looked forward to these visits. In this last year of his life when his mind was not clear, he was still with me. This time together pulled me into him in a deep and intense way. It has helped me deal with his loss.
Others who have seen and heard Flutterby say it helped them know how to be with someone who is dying in a meaningful way. That it opened up their mind and heart about how to share time with a loved one near the end of life. It helped them not feel alone. And to see it’s possible to still be close with this person they are losing.
Caretakers and medical professionals say that it gave them a deeper understanding of what families go through. And how they too can connect with patients and support families.
Whether you are a caregiver, support other caregivers, are in the medical profession, work with families and patients or are in an ancillary field, Flutterby can help. Here are some of the ways.