Like too many Americans, I understand firsthand the devastating impact that Alzheimer’s can have on a family. My mother Marjorie was diagnosed with advanced Alzheimer’s disease just before I was elected Governor of Virginia in 2001.
With her diagnosis came some of the most difficult decisions any family can have to make for their loved one. While I was fortunate that my father, a World War II Marine veteran, and my sister stepped up to serve as my mother’s primary caregivers, we often struggled to find the services and help that our family needed in order to care for someone with Alzheimer’s. I realized that if I – a financially successful businessman-turned-Governor! – was having trouble navigating the maze of Alzheimer’s care, then families with fewer resources at their disposal must be facing even more enormous challenges in finding support to care for a loved one. That’s why I helped launch SeniorNavigator, a website to help families navigate long-term care services, and the Virginia Health Care Foundation, to improve health care access for underserved and underinsured families. And as Governor, I passed legislation to improve state protections for those in adult care.
My mother’s decade-long struggle with the disease helped shape me to be a better legislator who fights to improve access and quality of medical care for our nation’s most vulnerable patients. But watching my mother suffer with this deadly disease also shed light on one of my greatest regrets: not getting her input on the kind of care she would have wanted when she was well enough to make her wishes known. I know firsthand just how easy it is to put these conversations off because it’s incredibly painful to imagine a loved one becoming so ill that he or she is unable to make decisions about her own
medical care. That is why I introduced a bipartisan bill to strengthen the quality and availability of counseling, support services, and care management for patients and families coping with life-limiting illnesses. In 2016, the Obama Administration finalized a rule, similar to that bill, which now reimburses doctors to have detailed care planning conversations with their critically ill patients. These difficult discussions are not about limiting any patient’s choices – but expanding them, by making sure that people have the opportunity to make their wishes known and can trust that they will be honored.
Although I lost my mother to Alzheimer’s eight years ago, her memory continues to motivate me. Right now there are 5.5 million Americans living with Alzheimer’s disease and that number is only expected to grow exponentially. I’ve pushed for increased research funding, and stand behind the national goal of preventing and treating Alzheimer’s by 2025. And as Co-Chair of the bipartisan Congressional Task Force on Alzheimer’s Disease, I will keep fighting this devastating illness. But the most powerful way to make sure Congress is doing all it can to support those affected is by sharing your stories. Only by hearing directly from caregivers and the families affected by this terrible illness can Congress truly understand the importance of supporting caregivers, and ending Alzheimer’s once and for all.