It's both an honor and a pleasure to guest host The Unforgettable Fund while Patty is away. My name is Deb Peterson and almost a year has passed since I began my own blog, The Yellow Wallpaper. When I posted my first entry on March 18, 2006, I knew very little about blogs and their potential. My mother had been diagnosed with probable Alzheimer's Disease in January, 2005, and I had been living with her ever since. During that time I'd read whatever I could get my hands on about the disease, but I still wasn't satisfied with what I knew.
From my reading I learned a lot about Alzheimer's stages and trajectories and medications, but I still knew very little about the caregiver's experience. How do you redefine "hope" after the future disappears behind the blunt immediacy of this illness? What do you talk about with the beloved parent whose world has been reduced to a collage of delusions and fears? How do you feel on the morning of the day that you place the care of that parent in a stranger's hands?
My blog began as the proverbial cry in the wilderness, only I discovered that it really wasn't a wilderness out there. Between posts I'd wander the internet, listening for other voices, and before long I heard them. I left a timid comment on Michael Murphy's Smoke & Mirrors blog after reading a beautiful post about his relationship with his late mother, an Alzheimer sufferer. Almost immediately he responded warmly. My next discovery was Gail Rae Hudson's Mom and Me Journals. I couldn't believe my luck--I left a comment and the next thing I knew, Gail and I had a conversation going. I then found Paula Martinac's Dementia Blues--another conversation, another friend. And then Mona, Karma, Bailey, Mike, Patricia--all of us conversing and finding the patterns in our lives as caregivers.
I found The Unforgettable Fund by way of a comment Patty left on Bert Piedmont's Had a Dad blog. Not only has Patty been there for me with generous and supportive words, especially during my mother's most recent difficult transition to assisted living, but she and her family back up their concern with the remarkable work they do on behalf of everyone who finds themselves in the shadow of this unspeakable disease. After caring for their own father through his illness they continue to fight the fight in his memory.
Had I not begun my own blog, I might not have met these wonderful people. I know I am a better caregiver because of their example and support. Although we have found each other because of our distinct as well as similar experiences with dementia, we might easily have become friends under other circumstances. I think of our conversation as one pattern in the texture of the internet, and I believe that our conversation is contributing to a renewed view of the bond between the Alzheimer sufferer and his or her caregiver.
Alzheimer's Disease is not a condition that is suffered only by a portion of our older population. As long as our government turns a blind eye to the problems--financial, logistical and psychological--of caring for its vulnerable members, then we all will suffer from it. I hope to post again soon about my own struggle to take care of my mother, so I'll close now by thanking Patty and her family for the opportunity to share my story. I'm glad to be here.
Wednesday, February 28, 2007
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