Birth of The Caregiver’s Voice
The year was 1998. I ventured forth in the unknown—the World Wide Web. It was scary. What if I made a mistake and the world saw? I checked and rechecked before posting online.
Surprisingly, people didn’t notice. In fact, they avoided the subject. People feared facing the reality of caregiving; especially, caring for people with Alzheimer’s. Few wanted to talk about dementia. The stigma was so great that people believed having a family member with dementia would harm their reputation in the community. Some immigrant families believed dementia was a curse. They felt uneasy talking about dementia; believing they might catch it.
The braver ones talked, likely to deal with their pain. I don’t know what to expect? The kids’ grandma was a peaceful, kind, and loving person. Now, she lashes out. She accuses me and the children of taking her things and even trying to poison her. What is going on? Discussions occurred in hushed tones.
We have learned much during the past two-and-a-half decades; still, the stigma lingers.
Caregivers’ Voices are Being Heard
The silence grew into whispers. In 1998, our initial caregiving site was hosted on an AOL-member site. Soon after, The Caregiver’s Voice was born. Twenty-five years later, TheCaregiversVoice.com serves as an established and credible cornerstone of independently curated information, inspiration, and humor for caregivers for people with dementia.
Meanwhile, thousands of caregivers have willingly stepped up to speak, write, and advocate.
Even people with dementia are proactively engaged. In the early years, many were diagnosed by the time they were in the more advanced stages of dementia. The image of being stooped-over while drooling was accurate to some degree. However, today’s medical advances allow for earlier and more accurate diagnoses of dementia. This means people with dementia are thriving. They are living vital lives while helping the rest of the world to see that life can be lived vibrantly with a dementia diagnosis.
The Caregiver’s Voice was born “to illuminate the caregiving journey while giving a voice to the millions of caregivers worldwide.”
The Caregiver’s Voice 25th Anniversary
Like most people who engage in a passion-filled initiative, I expected to be doing something different, 25 years later.
The time will come for a new person to carry on the mission of The Caregiver’s Voice.
For now, let us celebrate this anniversary! Considering the short lifespan of nearly everything in today’s rapidly changing society, twenty-five years is a LONG time!
The one thing that should not change in our fast-changing world, is caregiving. We must nurture those tender moments with those who entrust us with their care.
Reflecting on those Challenging Early Days Online
In 2001, after securing the domain name, TheCaregiversVoice.com, a caregiver’s son, stepped up to help. Kevin Fisher was only 13, and already the webmaster for TheRibbon.com. He raised the bar by custom-designing TheCaregiversVoice.com.
Back then, it was an unwieldy task to publish articles online. Adding images was an ordeal. We had to upload text and images to different servers. There was no WYSIWYG (What You See Is What You Get). I eventually learned enough html code to navigate on the back side on our site. After lots of trial and error, I was able to position images appropriately within the text. Those were (not) “the good old days”.
Today, talented designers are creating multi-function templates. Publishing has become a seamless experience.
More people began visiting the site. They asked questions. We answered. Soon after, I shared news of my forthcoming book.
One Best-Selling Title that Went International
In 1996, caregivers in my support group had encouraged me to write about my caregiving experiences. I had already written four books. I had never written a memoir. While family caregivers rarely spoke publicly due to the stigma, we felt safe in our support group. We laughed and cried. Caregiving was hard. I tried to make caregiving fun for my father with Alzheimer’s. Fellow caregivers laughed as I shared my experiences each week.
“Where’s my shoes?” the grammatically incorrect question my father asked repeatedly, debuted in hardcover in 1999. It became a best-selling title in the caregiving-for-people-with-dementia niche. International sales soon followed after it was translated into the German, Korean, and Spanish languages.
Two years later, I began work on the second edition. I would write an almost entirely new book over four years while speaking about caregiving across the country. The second edition was released in 2015. While both editions are out of print, here are a few: Excerpts from “Where’s my shoes?” My Father’s Walk through Alzheimer’s.
Over the last few years, I considered writing an updated 25th Anniversary edition. I’ve restrained myself from this temptation. There are enough caregiver book titles to choose from. Some are even featured here in guest posts and others are reviewed at The Caregiver’s Voice Review.
A Toast
Well, here’s a toast to The Caregiver’s Voice 25th Anniversary! I had a protein drink. What are you having?
Related 20th Anniversary stories:
2018 – The Caregiver’s Voice 20th Anniversary
Two More Initiatives for The Caregiver’s Voice 20th Anniversary
Wonderful piece. Thank you and thanks for your continuing passion to reach out and provide support and a voice to caregivers.
Thank you, Edie for taking a moment to write. I appreciate your comment and gratitude.