I have just published a book, “Begins the Night Music: A Dementia Caregiver’s Journal, Volume I”, available on Amazon.com, Barnes & Noble and worldwide.
Emma and Samantha are not our real names; I use them to protect my mother’s dignity and respect.
I am author of newspaper and magazine feature stories, essays, and served as editor of a community newspaper. For the last decade I served as sole, unpaid caregiver for my mother, watching her slowly slip away during her gradual decline from dementia. There was no one else to care for her; I had no family support and gave up everything I had, my belongings, my life as I knew it to care for Emma.
In May 2011, I began writing a blog, “Salmon Salad and Mozart: A Dementia Caregiver’s Journal” (http://salmonsaladandmozart.com); my book is based on this blog. I founded in March 2012 a caregiver’s support group, open to any caregiver who wants to tell her story, under “Women Writing for (a) Change” on LinkedIn comprised of members from around the world: “Caregivers: What are your experiences? As a sole caregiver for my mother, 97, who has dementia, I find care giving to be spiritually life changing, among other things.”
We now have a core group of six close friends who have never met in person. We provide an open forum for caregivers to tell their stories; we listen and offer support unconditionally. We have heard stories from such unexpected places as Cameroon — all come with the same story, just variations on a theme: “Even with all the help I may have, I am alone, I don’t know what to do, I don’t know if I can take much more.”
And the story doesn’t end when the loved one dies — no, that’s only Act I. There are yet the loved one’s affairs to sort out, the family feuds over money, and the caregivers themselves who gave up everything now left with nothing — often no income, no place to go.