Alzheimer's Community Member of the Week: Vicki Tapia
Vicki Tapia is an Alzheimer’s writer, advocate, and former caregiver. We talked to Vicki about some of her great work and are happy to have her as this week’s Alzheimer’s Community member.
What’s Your Connection to Alzheimer’s Disease?
Both my parents had dementia at the same time. Mom’s dementia was diagnosed with Alzheimer’s disease.
Are you currently, or have you ever been a caregiver to someone with Alzheimer’s?
Although my parents lived in assisted living/memory care/long term care, I was the family caregiver, intimately involved in their day-to-day care for my mom and dad for five years.
What’s Your Parents Story?
My mom’s dementia went undiagnosed for years, as she was quite clever at covering up and our family was extremely proficient at rationalizing mom’s sometimes bizarre and erratic behavior. Mom was the in-home caregiver for my dad who had Parkinson’s-related dementia and I was the closest relative, living in a city two hours away from them. None of the family perceived Mom’s idiosyncrasies as anything more than a senior moment now and then and stress in caring for dad. After my repeated pleas, though, Mom finally saw her HCP, who diagnosed Alzheimer’s disease. Within a few months, my parents elected to move to my city to be closer to me. That enabled me to become more involved in their day-to-day care.
Are you currently caring for them?
No, mom passed in 2008 and dad a year and a day later in 2009.
Can you tell us about AlzAuthors?
Founder and Manager/Director of the 501(c)(3) nonprofit AlzAuthors, founded in 2015. https://AlzAuthors.com. AlzAuthors is an ever-growing global community of over 200 authors and is united in an effort to light the way for others, with a vision to lift the silence and stigma surrounding Alzheimer’s and other dementias through the sharing of personal stories.
Can you tell us about your writings?
I am a long-time journal writer; I began keeping a diary about our dementia journey as a coping mechanism to relieve the stress of caregiving. Over time, I began to realize that my diary had become a book. Eventually, I had a few copies printed for family members as a keepsake. However, several friends who also had a loved one with dementia and knew about my writing asked to read it. After sharing the manuscript with friends and friends of friends traveling the same difficult road and listening to their comments about how much my family’s story helped them, I pursued transforming my diary into a memoir. This diary became my first book, Somebody Stole My Iron: A Family Memoir of Dementia, a 2015 finalist for Best Woman Writer in the High Plains Books Awards.
Somebody Stole My Iron has also been recognized as one of the Best Alzheimer’s Books of All Time by Book Authority (https://bookauthority.org).
Where can people find your book?
The eBook and paperback can be found on Amazon (amzn.to/2dCf4zi), Barnes and Noble or from the Publisher Praeclarus Press.
Do you have any advice for families who have had a recent diagnosis?
1. Learn about the disease so you know what to expect.
—Read helpful books about memory impairment, to have an idea of what lies ahead
—Read memoirs about other people’s journeys
—Read books teaching techniques on how to connect and interact with someone who has dementia
2. Join a support group. If the first one you attend isn’t quite right for you, try another one. It’s so important to have someone to talk with and someone on a similar journey can be especially meaningful.
3. Have a life outside of caregiving. Stay connected socially.
4. Have an outlet. Exercise regularly. I also kept a journal. These two outlets were my primary choices for coping.
Is there anything you would have done differently after your parents’ diagnosis?
I wish I’d been smarter in finding the right assisted living facility. I should have been looking at the caregiver turnover rate and the ratio of caregivers to residents rather than the “glitter” of outward trappings. I wish I’d had the list that’s in my book of what to look for.
I wish I’d known not to argue, reason or get upset with my mother, but simply have met her where she was. I wish I’d known better ways to interact with someone with cognitive impairment in a more compassionate and understanding way.
I wish I’d known more about the antipsychotic medications and their potential downsides and asked more questions instead of blindly following the doctor’s instructions for Mom’s different medications. I wish I’d known different specialty doctors don’t always coordinate care with primary care doctors. Had I known, I might have avoided a dangerous medication mishap for my mother.
Where can people follow you to stay up to date on your work and get advice?
- Twitter https://twitter.com/vicleetap
- Other platforms like a blog, etc.