THE DRAGONS OF ALSACE FARM , my eighth novel, turned out to be a very different book than the historical fiction novel I intended. After my mother's diagnosis of dementia, and after watching the complexities this disorder added to every element of her life, I decided to write my World War II survivor, Agnes, as a woman affected by dementia, to showcase this disease, and to illustrate its impact on its sufferers and their families.
It was a delight and a joy to discover so many authors and other advocates for dementia awareness on social media. I found a lively group of generous authors, The Alzauthors, on Twitter, and they welcomed me and "The Dragons of Alsace Farm," into their circle.
From that association, I connected with Gary Joseph LeBlanc, host of the podcast, "The Dementia Roundtable. Aside from supporting his own family members struggling with this disease, Gary is also an author, a columnist, a National Dementia Care Speaker and Advocate, founder of the Dementia Hospital Wristband Program and Dementia Mentors. and a dementia care educator. I was honored when he invited me to be a guest on his podcast to discuss our family's experiences in supporting a loved one with dementia.
Here is the podcast.
DEMENTIA ROUNDTABLE CONVERSATION with LAURIE LEWIS from Dementia Mentors on Vimeo.
From this discussion and many others with loved ones and providers, I share a few insights associated with this disorder.
1. Have the hard conversations early, when parents are healthy, so children aren't left to make
agonizing decisions without their informed input.
2. Prepare financially for the possibility of a dementia diagnosis.
3. There is no "one-size-fits-all-solution. Look at in-home care, live-in support, and small group
homes. Institutional care is not the only option.
4. Alzheimer and dementia patients can enjoy many happy, productive years with assistance.
5. There is guilt. If you intervene, your loved one will be angry. If you don't, they will suffer.
6. There is more guilt . In many circumstances, because of other responsibilities and demands, you
may not be able to personally provide what your loved one wants and needs.
7. There will be judgment. Brace for it.
8. You will need support. Someone you can talk to and cry with.
9. despite the changes occurring, your family member is still in there.
10. When you can't add to their memories, make moments.
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