October 20 was the eighth anniversary of my father’s death at age eighty. He died of end-stage Alzheimer’s disease after a 10-year struggle. Because of a wonderful hospice crew, the terror of that debilitating stage was abated until he simply curled up in a fetal position and died. I do not revisit that scene, immortalize the anniversary of his death, nor do I give Alzheimer’s disease its due. I realize it’s a horrible disease that in the 1990s we knew little about, and it was becoming a frequent point of conversation amongst my friends, neighbors, relatives and patients.
We existed on hope and functioned one day at a time. We learned that medications only treated symptoms, that there was no known cause, that there was no cure and that despite the optimism, there would not be any Alzheimer’s survivors. We built our hope for survivors on the successes of the cancer community. Surely, if we can attack, manage and even remit cancer, we can find a cure. What we must take into account is that cancer research has been at the research and trial stages a long time. The walk for the cure has not been a hike, it is a long trek, and they are still moving.
The fact is that most of what is known about Alzheimer’s disease has been discovered in the last 15 years, and this knowledge still is in the conceptual stage. However, the great news is that, from 1990, since congress funded the Decade of the Brain, the research and technology has accelerated the understanding of neuro-degenerative diseases. Science and technology, with advances in real-time imaging, has helped physicians outline treatment plans and discuss the disease’s known progression and expectations. The medical community’s understanding of mild cognitive impairment is an area that has advanced significantly. It is a condition where definitive diagnosis and aggressive treatment are becoming possible.
We know that not all forgetfulness is attributed to Alzheimer’s, and that not all mild cognitive impairment leads to Alzheimer’s disease. Knowing and discussing the possibilities and options of memory loss has the direct effect of reducing anxiety about the unknown. The sense of threat and anxiety has historically served to overwhelm the person experiencing the loss, as well as the caregivers. What I have learned about Alzheimer’s over the past 18 years is that caregivers are the survivors. Caregivers have learned about this disease from the laboratory and the living room, have learned to talk and make public this complex disease, and have funded and lobbied for research, which is now giving rise to real hope that in our lifetime we will see prevention of Alzheimer’s. What we have learned is that prevention, understanding of the disease, and early, aggressive symptom treatment will give us Alzheimer’s survivors.
To learn about the cutting edge science and hope of Alzheimer’s Disease, use your favorite search engine to locate the HBO special “The Alzheimer’s Project,” an online free streaming video of a “four part documentary series changing the way America thinks about Alzheimer’s Disease,” and contact the National Institute on Aging for their free publication, “Caring for a Person with Alzheimer’s Disease.” If this seems too complicated or overwhelming, call Senior Services at Blount Memorial Hospital at 977-5744. We can help.
Edward Harper is a licensed clinical social worker and the Senior Services coordinator at the Blount Memorial Emotional Health & Recovery Center.