Giulia: Hi Vicki, it’s great to speak to you. Thanks so much for joining me today. Can you tell us a little bit about yourself?
Vicki: Thank you, Giulia. It’s great to be here. I’m the author of two books, and a co-founder of AlzAuthors. Originally trained as an educator, I spent over 30 years working with mothers and babies, teaching the art of breastfeeding, so you could say caring is part of my nature.
In 2003, my “caring” energies moved to the other end of life, after both my parents were diagnosed with dementia. Caring for them proved very different than lactation counseling, so in a quest to cope with the many challenges, I kept a diary documenting our family’s journey.
After sharing the diary with friends and friends of friends traveling the same difficult road and listening to their comments about how much my story helped them, I pursued transforming my diary into a memoir. My first book, Somebody Stole My Iron: A Family Memoir of Dementia, was published in 2014 and became a finalist for “Best Woman Writer” in the High Plains Books Awards in 2015. Today, I learned my memoir has also been named one of the “Best Alzheimer’s Books of All Time“ by Book Authority, which is very humbling, along with exciting!
Five Fast Facts. I have . . .
G: That’s amazing. Can you tell us about AlzAuthors?
V: AlzAuthors has its roots as a collaborative promotional effort that began in 2015 among five authors of books about dementia. Three of us saw beyond this collaboration, envisioning a way to raise understanding and lend support to those whose lives have been touched in some way by dementia. With a vision to lift the silence and stigma of Alzheimer’s and other dementias, we founded AlzAuthors, a community of authors sharing their personal stories.
Since June of 2016, AlzAuthors.com has promoted the books and blogs of over 200 authors. These books are written by people who have traveled or are currently traveling the dementia journey, whether living with dementia, caring for a parent, grandparent, spouse or as a healthcare provider. We’ve also published two anthologies, compilations of the first two years of AlzAuthors blogposts, sharing over 100 heartfelt Alzheimer’s and dementia caregiving stories.
Today our all-volunteer management team numbers six, from the east to west coast of the U.S., and Canada. We recently became a non-profit organization, which we hope will allow us to do even more outreach. The six of us did not all meet outside of cyberspace until November of 2018. I must say, there was something quite magical to finally have the opportunity to see these women in 3-D!
G: You’ve published a book about your experiences with dementia – how did you find the experience of opening up and sharing your story with others?
V: Scary! A myriad of feelings ranging from guilt wondering if I was dishonoring my parents by sharing personal information to elation after receiving so many positive responses about the helpfulness of my family’s story. My feelings have been all over the page. It took nine years from beginning my diary to publishing my memoir and it wasn’t because I was actually taking that long to write the book. It had everything to do with fear of publishing, a raging internal battle. Should I truly unmask our family? Should I use a pen name? What would people think? What would my brother think? It became, above all, a privacy issue. At one point, the manuscript sat idle on my hard drive for almost three years.
Over time, I’ve slowly been able to move past much of the guilt and hesitation. Seventy-four positive reviews on Amazon have helped, but what I attribute even more to my healing comes from my association with my sisters of dementia. The other five with whom I connect and volunteer on an often-daily basis. Plus, it has been extremely rewarding to find and bring other authors into the AlzAuthors fold. We’re all in the boat together and the more we can offer a hand-up, the better for all.
G: How we view dementia and what information is available has changed dramatically over the last decade – what are your thoughts on this?
V: There is an amazingly large body of information about dementia out there circulating around the world. It’s important to stay informed, as new discoveries are being made every day. No, there is still not a cure, but a lot of interesting avenues are being pursued. For example, scientists are currently looking at what so far appears to be a promising vaccine.
Millions upon millions have been spent in search of a pill that can stop or reverse the brain damage already done by the time of diagnosis. Some scientists are focusing more intently on prevention and it seems to me that prevention must be, at the very least, part of the answer.
I would like
to believe that most of the growing body of information is helpful, although I
often observe what appear to be questionable advertisements or articles
promising a cure, offering this or that supplement or type of food as “the”
cure-all. In the end, this only gives desperate people a lot of false hope. We
have, however, learned there are life-styles that may make a person less prone
to dementia or at least delay the onset. I do listen to that. Both my parents
had dementia, so for me, it’s important to listen!
How do I truly feel about the blood tests that may tell us if we carry the genetic component for dementia? Would I want to know? I’m not sure.
G: How do you think digital tools like CogniCare can support families to navigate this information?
V: Caregivers are stressed. Anything that can be done to lighten the load is a good thing. I think CogniCare is a very positive step in the right direction. So much information at one’s fingertips in a busy and stressful world surely is helpful. I think it’s brilliant!
G: Thanks so much for your time today! It was great to chat to you and I’m looking forward to speaking to you again next week.
Find out what advice Vicki has to give for families in next week’s conversation.