WINNEMUCCA - A friend called last week with concern over her mother's rather bizarre behavior. A once close mother-daughter relationship had disintegrated over the past six months into anger, pain and confusion. What began as a question, erupted into a fight with a sibling and a disagreement about a medication: "But the doctor said..." And while both brother and sister had been with mom on this doctor visit, each had heard a different recommendation and no one could come to terms with what the correct answer might have been.
Enter into this a clouded mind and eventual explosion resulting in a mixture of crying, screaming and misunderstanding, years of friendship and devotion vanished. Mom, unable to comprehend, sent the daughter packing and speeding back to her distant home. Much time has passed but Mom still won't answer calls, brother slams the receiver in fury and hearts break repeatedly. Alzheimer's is so cruel to the victim; it may be even more furious with the family and caregivers.
This previously devoted family had taken all of the right steps to prevent this upset including intense family discussion on end-of-life wishes and complete agreement had been reached on health care decisions. Calm, lucid, cognizant minds had designed an indestructible plan for the worse case scenario. But this disease works in ways that destroy the best-laid intentions. Since Powers of Attorney were not in place, Mom is still legally responsible for her decisions so intervention is impossible. Protecting Mom's rights is critical but this has led to additional problems since Mom refuses assistance and advice. Toss in family frustration and angst topped with stretched emotions, and a family has fallen apart - right when support is essential.
I wish I had an easy solution for my friend and her family. I can only suggest time, forgiveness and continued gentle attempts at reunion. Hopefully the ice will break and conversation will resume. Until then I advised that she remember that the victim of Alzheimer's is in an altered state and what makes sense one second, is mass confusion the next. Sometimes distance helps; at other time persistence pays off. In the meantime simply reflect on the good as the battered soul heals.
Another friend asked me how one knows that he or she has Alzheimer's disease. While my insight comes from research, interaction and observation, I am not a doctor; I do not have the answer. But I do have this frightening response: I do not think that when the disease is raging, that the victim realizes the depth of the horror. Worse, when a millisecond of awareness arises, there is no time to react or respond. In the early stages, victims and family often admit that the mind is not quite right - forgetting, misplacing, disregarding hygiene and dissolution of previous activities comes on subtly and often seems so mild at the time that signs and symptoms are ignored if even noticed. It is during middle stages and hindsight that one recognizes all of the off-kilter actions and disturbances. Medication regimes can slow the descent and pacify the moment, but the destruction ahead remains difficult to bring to focus.
When surrounded by love and security, the present seems all right, even though the victim is not quite all right. As the disease progresses, control vanishes and the disease seeps into every pore. I say this (again from watching this monster) because I do believe that if victims realized the terrifying road ahead for themselves and their loved ones, we would hear of and read about far more cases of suicide. You cannot believe how difficult it is to share this thought with you but it is something I strongly feel. Few of us can imagine enduring the years of expensive medical care, family wars and increasing isolation and heart ache that Alzheimer's brings along.
Research studies continue and many neurologists believe that a combination of Aricept and Namenda produce positive results for maintaining. The government has recognized the ominous presence of the disease, and support groups like ours are here to help others. We meet the second Wednesday of each month at noon at the hospital in the Quiet Room. We will greet you with open hearts and minds. Peace evolves as you realize that you are not alone, that yours is not the only trial (although we respect that it is unique to you), and we listen. Perhaps we will add an evening session for those caregivers who work - would that help you?
Gini Cunningham is the facilitator for the Alzheimer's Association Support Group, which meets the second Wednesday of each month at noon at Humboldt General Hospital. Her column appears the second Tuesday of each month in the Humboldt Sun. She can be reached via e-mail, gini.cunningham@sbcglobal.net.
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