None of us knows what adversities life will bring. It was more than fifteen years ago, in 1999, when I first discovered that my wife, Linda, was having serious problems with short-term memory loss.
Co-workers at Seattle City Light, where she had worked for twenty years as an energy conservation management analyst, noticed that she was having more difficulty. A normally well-organized person, she forgot her appointments and drove her colleagues to distraction by endlessly repeating questions.
As time went on and her cognitive abilities declined, more disturbing signs emerged. One Saturday, Linda went out shopping and forgot where she parked the car. On a vacation to France, she neglected to bring several essential medications. It was a matter of time before she began to forget the names of friends and family members.
At age 57, Linda was diagnosed with younger-onset Alzheimer’s disease, joining the more than 200,000 Americans under 65 who develop the disease. Two years later, she was placed in an adult family home. In 2011, she succumbed at 63 after a twelve-year battle.
In our aging society, many of us will soon face the daunting task of caring for a family member or loved one with a debilitating illness. Alzheimer’s caregivers face especially tough challenges. Not the least of those are the stress and grief caused by ambiguous loss. The statistics are sobering. Last year an estimated 5.2 million Americans had Alzheimer’s disease, and the numbers are soaring.
In Washington state, nearly 150,000 people are living with Alzheimer’s or other dementia, and they are being looked after by more than 350,000 caregivers—most of them unpaid family members.
Last January, I published Into the Storm: Journeys with Alzheimer’s, an anthology of stories by twenty-three writers, journalists and health practitioners across the United States sharing their experiences caring for loved ones with Alzheimer’s disease and dementia. My hope is that this book will provide a road map for the millions of American families facing this tragedy. Alzheimer’s disease now is the third leading cause of death in Washington state. More sobering is the fact that while deaths from heart disease, breast cancer and stroke decreased from 2000 to 2010, Alzheimer’s-related deaths have risen by almost 68 percent.
Since President Obama signed the National Alzheimer’s Project Act into law in 2011, the search for a cure to this disease remains elusive, but there are hopeful signs. The National Alzheimer’s Plan, introduced in 2012, is moving toward full implementation with the ambitious goal of preventing and effectively treating Alzheimer’s by 2025.
This year, Congress appropriated more than $120 million in additional funding for Alzheimer’s research and caregiver support, but more federal dollars are needed to advance research and ultimately defeat the scourge of Alzheimer’s. Last March, the Washington State Legislature enacted a new bill, which Gov. Jay Inslee signed into law, to develop a comprehensive Alzheimer’s disease plan for our state.
Such a plan will leverage Washington’s historic commitment to innovative health and senior care to address the full range of Alzheimer’s issues and outline the steps the state must take to sustain and improve its services for people living with Alzheimer’s and their families.
Alzheimer’s disease has become a national public health epidemic whose long-term impact we ignore only at our own peril. As caregivers, we share our stories in order that our voices might advance public understanding about this disease and hasten the day when medical science will find a cure.