November is National Alzheimer’s Disease Awareness Month, and among the many events organized to raise awareness about this disease and the need for more support for patients and caregivers was a briefing on Capitol Hill hosted by a coalition of non-government organizations dedicated to improving treatments and one day finding a cure for Alzheimer’s.
The event, sponsored by the Gerontological Society of America, the AARP in partnership with the John A. Hartford Foundation, the Alzheimer’s Association and the National Alliance for Caregiving, accomplished exactly this in highlighting personal stories of caregiving by members of Congress. Members shared their family’s own experience with caring for a loved one battling Alzheimers.
Rep. Chris Smith, the founding co-chair of the bipartisan, bicameral Congressional Task Force on Alzheimer’s Disease, updated the group on legislation he is championing to assist caregivers, and then delivered the following remarks on his experience in caring for his mother who struggled with signs of Alzheimer’s and with brain cancer:
In 1996 my mother was diagnosed with brain cancer and with early signs of Alzheimer’s disease, and lived with my family for almost a year.
Despite having broken hearts over her ordeal—brain surgery at UPenn, a long recuperation and mental confusion—we absolutely cherished her living with us.
My wife Marie—the primary caregiver—was a saint.
Nothing was too much for Marie, including 24/7 monitoring—and a baby monitor in her room and ours—ensuring the timely and accurate taking of medicine, doctor visits and reassurances that, “Mom you are not a burden, we love you and there is no other place on earth we would want you to be than with us.”
We had many sleepless nights. Twice EMT was called for medical emergencies. The brain cancer eclipsed the progression of Alzheimer’s, so the tell-tale forgetfulness was still in the early stage.
During one emergency hospitalization at Fox Chase, my mother looked up at us and said: “I thought I was lost and you would never find me.”
When she went to a Hospice, my wife, brothers and I were with her around the clock.
My mother had a strong faith in God and always put family first.
She was a successful businesswoman and along with my dad—a WWII combat veteran—founded and ran their own small business. She had a penchant for math and numbers—and did all the books—but in the final year had trouble writing a check.
My mother’s extraordinary faith, love, goodness, empathy for others and courage during this crisis inspire my family and me to this day.