alzheimer's and other forms of dementia
Sunday, October 11, 2009
I learned so much while working with Audette Rackley, of The Center for BrainHealth on the book I Can Still Laugh: Stories of Inspiration and Hope from Individuals Living with Alzheimer's. The 13 individuals with dementia whom we profiled, and their caregivers, were warm and friendly, smart and determined, open-hearted and unforgettable.
The book profiles members of the Stark Club, an intervention program at the CBH named for the charismatic Temple Stark, one of the people whose story we tell (and who is quoted in the book's title). The CBH focuses on strength-based intervention--in other words, they figure out what skills and strengths people with dementia retain and help them do those things as long as possible. For example, because Temple retained his ability to read for a long time, the CBH arranged for him to read to children at the Callier Center for Communication Disorders, also part of the University of Texas at Dallas. The children, many of whom had hearing impairments, adored Temple, who joked that it was a perfect set-up, "Because I can't read and they can't hear." It was this sort of humor and good nature from Stark Club members that helped make what could have been a depressing writing job inspiring instead.
The Stark Club brought together a group of people with early-onset Alzheimer's--they developed the disease in their 50s and 60s, while they still held jobs, had children in college, looked forward to continuing long, active lives into retirement and beyond. The club met on a regular basis for guided discussions, led by Audette and graduate students, slowed down and targeted to allow everyone to contribute. This helped maintain members' cognitive functioning as long as possible and helped stave off the isolation and depression that exacerbate the symptoms of dementia.
But the book is not just about the meetings; it also is about the individual members, each of whom had his or her own strengths. The chapters look at the many ways they lived active and engaged lives for as long as possible. As Audette said to me at our first meeting about the book: "When you've met one person with Alzheimer's ... you've met one person with Alzheimer's." People with dementia are no less individuals after the disease than they were before.
What the CBH hadn't really expected when they formed the Stark Club was the intense and very important bonding that developed among the members, who understood each others' challenges and fears in ways even the most compassionate and knowledgable caregivers never could. Support groups for caregivers are common, but members of the Stark Club (as well as the caregivers) became a tightly knit group. They grew to rely on each other for emotional support, understanding, and fun--they had parties, outings, a couple of the couples even took a cruise together.
The members of the Stark Club were all very successful professionals before the disease struck. I was terribly nervous about my first Stark Club meeting, but that anxiety dissipated the minute I entered the room--it was like entering a boardroom while a conference was in session. The conversation was more free form, but everyone in the room contributed to his or her ability and the warmth and camaraderie were palpable.
This book, self-published by the CBH, was actually released last year, but it was kind of unattractive and expensive and I was a little reluctant to promote it. But now it has been redesigned and the price is right and I am proud and happy to spread the word. I learned tons from the members of the Stark Club and you can too. We included not only inspirational profiles, but also practical tips and advice.
Many of the people in this book are no longer with us but, as the title says, they wanted their stories to bring hope and inspiration to others facing this terrible, still-incurable disease. I think of all of them often and feel grateful for having had the opportunity to meet and work with them. In fact, many of the lessons they taught me about living with Alzheimer's apply to life in general--lessons about living in the moment and appreciating the here and now.
Working with Audette was also a great pleasure--she taught me so much, our writing styles were compatible, and she was lots of fun.
P.S. What I Didn't Say
Thursday, October 1, 2009
If you're interested, I also contributed to this anthology, compiled by the same editor:
Ah heck, let's go for broke. I'm in this, too:
So start that holiday shopping early!
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