My Mother is Dying

As I am writing this my mother, almost 80, is dying. In Texas, my Dad, sister Philda, and a host of family and friends is working with Hospice in an effort to make Mom's passing as comfortable as possible. In California I am back only a week after sitting up with Mom for hours while she struggled to take a breath, while we each took turns telling her how much we love her, and she, so wispy of breath told us the same.

Alzheimer's, diabetes, a weak heart, congestive heart failure and “Whatever that bug is that’s going around,” have taken their toll on a woman who fought long and hard to grow up, survive and keep her own family of a dozen (brothers, sisters, Mom and Dad) at one time, and that of her three sons and two daughters and a loving, dedicated and devoted husband well and well fed, healthy and happy, spiritually and morally strong.

I just recently completed the first edition of a book about Mom. Alzheimer’s: Stories Mom Forgot. It was my first draft, but knowing “things” might not go much longer I self-printed, published and delivered in time for the holidays (Mom's absolute favorite time of the year - Christmas Day is her’s and Dad’s anniversary, 62 years) enough copies for my brothers and sisters, my Dad and a few others in the family.

It was well received, and each said that amid the tears of laughter and pain they found renewed memories of their own forgotten stories. What a gift, I was told, keeping your mother’s memories alive, for you and all of us.

I have more stories to add, so the second edition is the one most likely to achieve some degree of mass publication. Sadly, now it will have an ending where no further memories or stories will be created. But it will contain much of what my mother was, who she is and always will be. The book also encourages others faced with Alzheimer’s - victim, family, friend or acquaintance - to find ways to preserve their own stories and memories.

It is my intent, and with the support of my circle of family, friends, acquaintances in my day-to-day world, and video industry universe entirely possible, to go beyond this initial preservation of Stories Mom Forgot. Alzheimer’s is well-past that thing about being, what is it, five removed? from virtually any other person on the planet? None of us is much more than one removed from someone touched by this damned disease. I hope to, like Steven Spielberg, establish a movement across the country (for now, the world, perhaps, eventually) that supports the use of video, audio and publication to establish an archive preserving these lost stories and memories.

I have no idea what I am doing, or where to start, but I will begin immediately, as I wait for that dreaded phone call from Texas, to research and reach out in an effort to find the means to do this.

As Nancy Gibbs wrote, in her essay Remember This, Time magazine, December 8, 2008, regarding why we save and collect things. Because, she wrote, they are ”...the memory of the moments that make us who we are.”

Speilberg launched the “Survivors of the Shoah Visual History Foundation” in 1994 after filming Schindler’s List. Completing an archive containing testimony from 51,661 eyewitnesses was “a dream that became a remarkable reality,” he said.

Like Shoah there are other memories, stories all but forgotten, and perhaps in their own ways as educational and important to memory preservation via video, audio or publication - stories and memories of Alzheimer’s victims, their families, friends and acquaintances.

I will keep my readers and followers posted on where this leads.

EPILOG: Mom died at 6:20 a.m. on Tuesday, January 27, 2009; she was buried Thursday, January 29, 2009 in Timpson, Texas, Weaver Cemetery, our newly-acquired "immediate family" plot. During her final hours Mom, Margie, Margaret, the woman Dad has always called "My Sweetheart" was able to individually tell each of her children, and my Dad, "I love you with all my heart."

Until her very last cognizant moment Mom was able to spell "H-O-P-E-L-E-S-S." This is a special thing we shared when Mom was several years into Alzheimer's. She would ask, "Am I hopeless?" We would ask, "Can you spell hopeless, Mom?" Then, when she did, unerringly, we would respond, "Then you are not hopeless Mom." She would smile for awhile, then ask again, "Am I..."

I am expanding my book about Mom; "Alzheimer's: Stories Mom Forgot" and I will soon be further pursuing a way of honoring her memory through web site, publication and any other available means by advancing a program designed to help others affected or afflicted by this disease preserve their memories and stories.
E.C.