Sunday, May 31, 2009

The Alzheimer’s Project

When Jim was first diagnosed with dementia of the Alzheimer’s type, I knew nothing about the disease. One day shortly after Jim’s diagnosis, I watched an HBO special on Early Onset Alzheimer’s. The show followed a brother and sister with the genetic form of Alzheimer’s. The sister was in the end stages, and the brother was beginning to need help dressing himself. I remember the gnawing feeling in the pit of my stomach when his wife fastened his belt. As the sister lay dying, the younger generation, a boy and girl in their teens, talked about their fifty-fifty chance of developing early onset Alzheimer’s. That show was a crash course on the relentless disease and how it affects the entire family.

With families of 5.3 million Americans traveling the Alzheimer’s journey, HBO has developed a documentary called “The Alzheimer’s Project.” HBO opened their airways to non-subscribers to make this program available to the general public. Anyone with Internet access can watch the programs on the Alzheimer’s Association website at http://www.alz.org/.

Many reviews have been written about “The Alzheimer’s Project” and this is not going to be one of them. I’m only going to talk about my reaction to the series.

I did well on Part I, “The Memory Loss Tapes,” until the death scene. Too many things about that scene brought back the emotional tumult of Jim’s death. As I watched the family’s faces, I remembered the inner struggle to face the reality of our journey’s end.

My first reaction was HBO should not have shown that scene. My friend, Ted, whose wife is in the final stages of the disease called me to make sure I knew about the series. He said, “They are telling it like it is.” I had to admit he was correct.

I imagine not everyone at HBO was in agreement about showing the death scene. I had the same internal struggle about including the final story in Alzheimer’s Anthology of Unconditional Love. I was afraid “The Aftermath” would be too depressing, but something compelled me to share Jim’s death and my reaction. Caregivers and people with Alzheimer’s have enough to deal with to make it through the day-in-day-out struggle with dementia. Did I want to let them know that the death of their loved one is the final insult? That was the moment I realized that no matter how much I had done, the disease won.

Part II, “Grandpa Do You Know Who I Am” shows how young people see the disease. I think about how my grandchildren never knew what Jim was like before dementia. Their image, like some of the children in the film, is of a different person whose brain has been destroyed by disease.

The “Caregivers” is helpful with its real live experiences, and we plan on showing this film at our support group. Knowledge is power and the more we know about the disease, the better caregivers we are. Jim had aphasia early in the disease and wasn’t able to tell me what he was thinking or how he felt. I was blessed by becoming friends with people with Alzheimer’s who retained their communication skills. I learned so much about how a person with Alzheimer’s feels from my friends with the disease. I truly appreciate their insights, fears, and hopes.

“Momentum in Science,” both parts, assures me that progress is being made toward diagnosing and understanding Alzheimer’s affect on the brain. One of the researchers featured in the film, Randy Bateman, MD, from Washington University, accompanied our Missouri Delegation on legislative visits at the Public Policy Forum in 2008. I was impressed with his down-to-earth manner.

The early HBO series helped me understand Alzheimer’s, but the Alzheimer’s Project has a much wider scope with its marriage of personal stories and the hope of scientific breakthrough. Unless science moves forward and finds a cure for Alzheimer’s and related dementias, death is the conclusion of the disease. I look forward to the day when we have Alzheimer's survivors walk a victory lap at Memory Walk. Until then, the only survivors of Alzheimer’s are the caregivers and families.
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