Expressway: Traveling a difficult road with Alzheimer's
My wife, Clare, and I love to travel. Upon retirement, we flew across the Arctic Circle, strolled across the Great Wall of China and through Red Square in Moscow, and meandered among the giant tortoises in the Galapagos. But on one of our trips, I noticed Clare forgetting things, and these weren't mere "senior moments." She'd talk about two grandchildren, although we have four. Or she'd talk about our trip to France, though we'd never been there.
It wasn't just memory. Clare always had an excellent sense of direction, but got us lost in cities when we were on our own. She misplaced objects and seemed confused at times.
We visited both our regular doctor and a neurologist. Brain scans and blood work appeared normal, and Clare was acing brief cognitive tests. For the next three years, she was treated for stress, anxiety or depression -- not Alzheimer's disease. It was 2006 and Clare had not yet turned 60.
However, symptoms persisted and comprehensive testing eventually led to the diagnosis of "early" or "young" onset Alzheimer's disease, just a month after Clare turned 63.
Fast-forward three years to today. Our lives have changed dramatically. For me, now a spouse caregiver, each day presents its share of stress. I try to be patient when Clare asks the same question over and over, or we repeatedly watch her favorite TV shows. Sometimes she can't follow a simple one-step direction, or forgets a thought in midsentence. Sometimes Clare just bursts into tears, saying, "I can't stand what's happening to me. I don't feel like me anymore."
Alzheimer's is much more than memory loss, confusion and inability to see things right in front of you. Cognitive, personal hygiene and motor skills eventually disappear. Many undergo personality changes resulting in ranting. Fortunately, Clare has retained her sweet disposition, so, for example, we can still dine out. Of course, before we reach our car, she will have forgotten where or what she ate. But "in the moment," she will have enjoyed herself.
We've both attended weekly support groups conducted by the Long Island Alzheimer's Foundation in Port Washington. Clare attends a foundation day care program to interact socially with others and engage in mentally stimulating activities. The spouse caregivers group has taught me ways to cope. The foundation, and a Town of Huntington adult day care program, provide me 14 hours of respite each week.
November is National Alzheimer's Disease Awareness Month. Alzheimer's is the sixth-leading cause of death in this country and the only one among the top 10 killers for which there is no effective prevention, treatment or cure. People with Alzheimer's die within an average of eight to 10 years after diagnosis (the range can be as short as one or as long as 20 years). I have already been to eight funerals in three years to support members of my spouses group.
For 2012, costs to Medicare and Medicaid for caring for those with Alzheimer's are expected to total $140 billion. Costs are projected to increase to more than $1.1 trillion by 2050, if nothing changes. Despite rising national debt, we need to increase funding to find ways to prevent, treat and cure this disease.