Testimony from Conversations with Congress (with the staff of NJ District 3 Congressman Tom MacArthur)

August 2015

When my parents were both diagnosed with Alzheimer’s disease within 4 months of each other in 2010, it felt as if my siblings and I had been dropped in the middle of a foreign and unfriendly country with no bearings toward the language or the landscape. We wandered chaotically in this new world for many months – years even… my mother’s primary care doctor instructed us over and over every time she had a visit to pretend as if this disease wasn’t happening. My father’s neurologist (who issued the diagnosis) insisted repeatedly that it was not his job to help us locate resources – that he had no idea about such things, that we had to find them on our own. We went years before we had a clear sense of where to go or what to do to move forward with getting the best support system in place for our parents. Moving forward runs counter to Alzheimer’s trajectory as a disease. At this point in my mother’s journey, I liken her to an 18 month old though with less cognitive ability to form ideas or communicate needs. She cannot bathe, toilet, or dress herself and her clothes are constantly stained with food splatters from her messy attempts to feed. My father, whose own father passed away 34 years ago, asks me nearly every day if he can please talk to his dad. Alzheimer’s is a disease of regression. And a disease of forgetting on the level of not just memories but the basic functions necessary for survival. Families living in the midst of this scary, foreign landscape need the help of people like Congressman MacArthur and his colleagues in order to move forward. They need support to get their bearings. We are very thankful for the Congressman’s support of the HOPE (Health Outcomes, Planning and Education) for Alzheimer’s Act which provides Medicare coverage for comprehensive care planning and requires the Dept of Health & Human Services to educate providers like my parents physicians about this benefit & to identify barriers they may face to access such care planning. We beg the Congressman to continue supporting his constituent families struggling to move forward with this disease.

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