How I Accidentally Wrote a Book on Alzheimer's Caregiving

I wroteas a love story. It's about the powerful 30-year relationship I had with Edward Theodoru, a delightfully colorful, wickedly eccentric Romanian gentleman and scholar.
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Shou-Mei Li holds the hand of her husband Hsien-Wen Li, who is an Alzheimer's patient, at their home in San Francisco, in this photo taken, Thursday, Sept. 1, 2011. Dementia is poised to become a defining disease of a rapidly aging population _ and a budget-busting one for Medicare, Medicaid and families. The Obama administration is developing the first national Alzheimer's plan to combine research aimed at fighting dementia with help for caregivers. Around the country, thousands of families are pleading for changes to improve early diagnosis and help keep loved ones at home instead of in nursing homes. (AP Photo/Ben Margot)
Shou-Mei Li holds the hand of her husband Hsien-Wen Li, who is an Alzheimer's patient, at their home in San Francisco, in this photo taken, Thursday, Sept. 1, 2011. Dementia is poised to become a defining disease of a rapidly aging population _ and a budget-busting one for Medicare, Medicaid and families. The Obama administration is developing the first national Alzheimer's plan to combine research aimed at fighting dementia with help for caregivers. Around the country, thousands of families are pleading for changes to improve early diagnosis and help keep loved ones at home instead of in nursing homes. (AP Photo/Ben Margot)

I wrote Come Back Early Today: A Memoir of Love, Alzheimer's and Joy as a love story. It's about the powerful 30-year relationship I had with Edward Theodoru, a delightfully colorful, wickedly eccentric Romanian gentleman and scholar.

My only purpose was to chronicle the relationship and share it with the public. The book narrates the story of our early romantic years together, including Ed's quintessential old-school European manners, our subsequent decades-long relationship as soul mates and our eventual triumph over his Alzheimer's.

Come Back Early Today does not give advice to caregivers. But it does illustrate how Ed's disease progressed and how I dealt with the numerous issues that typically arise when caring for someone with Alzheimer's.

So you can imagine my surprise when most of the book's reviewers focused heavily on the parts that describe how I cared for Ed when he had dementia. It shows how I managed everything from denial, getting a diagnosis, convincing him to go to a long-term care facility and arranging a DNR (do not resuscitate) order, to end-of-life and hospice considerations.

Consequently, I reduced the number of articles I wrote about the relationship for the Huffington Post and the Alzheimer's Reading room and began writing more articles about dementia caregiving.

One day, I unexpectedly received a letter from a Cape Coral woman whose husband has Alzheimer's. She wrote: "The main reason I am writing is to tell you how much I liked your book. Since my husband was diagnosed [with Alzheimer's] I have read many books, attended some courses and joined a support group. Your book is the only one that gave me hope."

That's when I realized I had accidentally written an important resource for Alzheimer's caregivers that also includes a love story rather than a love story that just happens to illustrate solutions to several dementia caregiving issues.

I'm still intrigued by the unforeseen responses to my memoir.

You can get a copy of Come Back Early Today at Amazon or my website, which also contains a wealth of information for Alzheimer's caregivers.

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