Your search is over. Here it is - the perfect gift for a loved one with Alzheimer's or dementia. It's a book to read with your loved one; a book is that written very simply, with adults in mind. It is written with respect, dignity and yet is accessible to anyone suffering from memory loss.
"Christmas Joy" is written with love by Ellen Nielsen, an online health activist I have long admired. Ellen's facebook page, "Caregiver Connexion" is a daily source of information and inspiration for anyone who cares for a loved one with dementia.
I skyped with Ellen yesterday and learned about her life as a caregiver, an entrepreneur and a writer. A marketing and communications consultant, Ellen fell into caregiving for both her parents. Her mother suffered early onset Alzheimer's and a couple of years later, her father began exhibiting symptoms as well. Ellen cared for her parents as their illness progressed over a fifteen year period. "It was the worst at the beginning", Ellen reflected. "I began to have dizzy spells... I couldn't walk without feeling that I was about to fall. The doctor diagnosed extreme stress. I felt like no one understood what I was going through. People said things that made me feel more alone.. .things like "your parents looked after you, so you should look after them." But this illness causes such a steep decline and it's so sad. I didn't want anyone else to experience what I had. So, I try on my facebook page to create tiny moments of respite."
I asked Ellen to tell me how the idea for the book came about. "My father could still read, even in the middle stages of dementia. Some people use children's books with older people, but I didn't want to do that. I knew that I needed to create a book at a children's reading level, but with adult characters and story lines that were true to an older person's life experience. I've been working at it for two years. I showed Dad an early copy of the book before he died. And when I told him I wrote it, he smiled and popped down the front of his shirt, to hide it and keep it safe - it was so funny and so like him!"
Ellen told me a little about what readers can find in her book, "Christmas Joy." "The idea of the book is simple - it begins, "I get Christmas joy from..." and that sentence repeats and tells stories of the roles that our loved ones played in family Christmases over the years. It also offers lots of opportunity to chat and validate the contributions of loved ones in the family over their lifetimes."
I asked Ellen if she planned to write other books after this one. "Yes! People with Alzheimer's or dementia often remember events that took place in the 60s, 70s or 80s. So, my next book will have the repeating phrase, "In my day....." There will be lots of discussion points about things like station wagons, rotary dial phones, daily milk deliveries... things like that. And there will be lots of pictures, so even if the person can no longer read, they can chat about the images with their caregiver."
Ellen Nielsen is an interesting and talented person. She reaches out to caregivers in developing countries and has used her connections in Pakistan to print "Christmas Joy." Readers of her "Caregiver Connexion" facebook page will know Rizwan, Ellen's Pakistan-based social media assistant. Ellen Nielsen knows that for caregivers, there are no borders to compassion and innovation.