I’m quite certain no one will be able to avoid being a member of some sort of medical support community at some point in their lives. Cancer, Parkinson’s, ALS, MS, heart disease, dementia – or any of the multitude of conditions that disrupt a person’s status quo – will eventually find most of us clinging to that common bond of support.
For my brother and I, it is Alzheimer’s disease that has been the defining community to which we both belong. My brother, Don Desonier, recently changed his career focus from family law to family caregiver consultant, a career that bloomed out of his experience with our father, to be sure, but more pointedly as a result of spousal care for his wife, Nancy, who died from a mixed dementia diagnosis on July 4, 2012. His company, Transitions in Dementia Care, provides support for a caregiver’s journey. “You don’t have to do it alone,” and “Helping you walk the path with dignity and hope” are the major tenets of his one-on-one work with individuals and families. As with all things in life, going it alone is rarely the healthiest path of least resistance a family caregiver might follow when strapped with the learn-as-you-go task of dementia caregiving. Consulting with professionals or like-experienced individuals can only enhance the caregiver’s efforts.
Several years after my father’s death, I immersed myself in providing Alzheimer’s Association group caregiver support. Concurrent with that work, I was a certified long-term care ombudsman for the State of Washington, advocating for those living in long-term care facilities. The two jobs complemented each other quite readily. When I thought I was ready, I wrote about my father’s caregiving experience, eventually publishing Requiem for the status quo, a novel that ushered my membership into the AlzAuthors writing community for which personal family Alzheimer’s experience, plus writing skills, can qualify a person for membership.
My five-year road to publication was fraught with challenges, not the least of which was trying to get into an industry that, quite frankly, was not enamored with the icky topic of Alzheimer’s disease or other dementia. Lisa Genova’s Still Alice was the big winner in the publishing world when it came to fiction about dementia. Her novel and an eventual movie filled the stories-about-Alzheimer’s gap that existed at the time, and she did so quite swimmingly. She is an extraordinary author (multiple book titles to her name) and her fictional Alzheimer’s story was done well.
But I too am privy to extraordinary literary contributors on the subject of Alzheimer’s and other dementia. The AlzAuthors bookstore contains a wealth of non-fiction and fiction titles that will most certainly meet the needs of adults and children who have experienced – or are experiencing – a life with dementia. I am personally reading each and every title – it will take me awhile because there are numerous titles – but one glance at the bookstore and you’ll be able to pinpoint the exact subject matter that will meet your particular situation and query. My own novel, Requiem for the status quo, will be added to the bookstore December 20th of this year.
As odd as it sounds, I celebrate the fact that Alzheimer’s is becoming quite mainstream.
That is a good thing because once it appears more commonly and intuitively into our lives, we will be better able to manage all that this disease dishes out. It is by no means a popular disease, but it is indeed a disease of the populous.