Becoming a caregiver started as far back as my earliest childhood memories. My oldest sister was born mentally disabled, living her life equivalent to being around six years old. So it was drilled into me that I
needed to hurry up and become her older brother and guardian, always keeping a close eye on her—making sure she was safe.
Even as far back as 18 years ago, dementia also walked into my life. My father had developed Alzheimer’s disease. We had partnered in opening a used bookstore together and after several years of both building the business, his (our) life began to change. This was the beginning of an 11 year campaign of becoming Dad’s primary caregiver.
At the advent of that decade-or-so, I was writing a paranormal suspense trilogy. Tough I kept trying to finish the third part of the series, my caregiving duties became so penetrating I found myself constantly struggling to develop my characters to my satisfaction.
I taught myself early on, however, when beleaguered by writer’s block—hey! Sit down and write yourself a letter. Get those creative juices flowing! My dispatched words became those of my father’s and I, daily struggles and triumphs of living with dementia. Every time I would let someone read these compositions, I would hear, “You need to do something with these—they would help so many in need.”
In August, 2008, I began writing a weekly column called “Common Sense Caregiving” and I’m proud to say that I’ve had over 350 articles in newsprint directly on the subject of dementia care.
Gleaned from my 5000-plus days and nights of personal experience, I have written several books for caregivers. “Staying Afloat in a Sea of Forgetfulness” was my first, then the others, “The Aftereffects of Caregiving” “Managing Alzheimer’s and Dementia Behaviors (Health Care Edition)” and have also co-authored “While I Still Can.”
To further complete all of my personal experience, honestly, I received my greatest education from an international group that I co-founded called “Dementia Mentors.” This group is a virtual place for those living with any type of dementia where they can remain social, specifically with others enduring the same symptoms. I have truly learned that there is no greater “expert” than one actually living with the disease. We need to listen to these folks—and I mean, truly, listen!
I encourage you to go to www.dementiamentors.org and check out the video page. There you will find close to 100 three-minute videos, all made by those with dementia. You will get the inside scoop of what it is intrinsically like to live with a dementia-related disease. These people are absolutely amazing, and need to be heard.
A final thought on caregiving: what I have learned is that caregiving is truly about making sacrifices. It’s what we do! This is a job of dignity and nobility. I have met some of the most admirable people along this lengthy campaign and I’m sure I will meet more tomorrow. You will find that you will too.