My beautiful mother Patricia “Patti” Mahoney was diagnosed with Early-onset Alzheimer’s when she was only 58 years old. I have minimal family history of the disease and my mother was otherwise in good health at the time of her diagnosis, so this came as a shock to us all. Patti was not just my mom but also my best friend, as well as a vivacious and loving wife and grandmother who devoted her career to helping the elderly and disabled as a Therapeutic Recreation Director. She still had many goals and dreams left for her future.
My mother is now in the later stages of the disease – the progression since her diagnosis has been rapid. She now requires 24/7 care and lives at home with my father who is her primary caregiver.
It is emotionally devastating to witness the horrible effects Alzheimer’s has not only on the sufferer but also on the loved ones and caregivers. My father and I were thrust into the role of caring for my mother with little roadmap to follow, and as the disease progresses, the toll it takes on many levels can be difficult. It got to the point where I knew I had no choice but to channel my anger and sadness in a way that would help to make a positive difference, so over the past year I’ve become more involved with advocacy.
Last summer, I connected with a nonprofit called the Purple Elephant, whose mission is to increase Alzheimer’s awareness among the younger generations, and they featured my story on their social media sites. Last fall, for the Greater Hartford Walk to End Alzheimer’s, I served as the Captain for my team, Patti’s Posse, and we made the Champion’s Club due to our fundraising efforts. In February, I testified before Connecticut legislation in an effort to preserve funding for the Statewide Respite Care Program, which provides critical community based services to hundreds of families throughout the state, and I also spoke about the importance of the program during 2017 Lobby Day at the state capital. In March, I had the opportunity to attend the National Advocacy Forum in Washington DC, and met with other Advocates from across the country as well as with our Connecticut legislators on Capitol Hill. We explained to them that Alzheimer’s is the most expensive disease in America, and requested they cosponsor the Palliative Care and Hospice Education and Training Act (PCHETA) and also support increased research funding for NIH.
I support the work the Alzheimer’s Association does to bring public policy issues and the need for increased research funding to the forefront, and for the ongoing support and resources they provide for those afflicted and their families. I fight for my mother, and I fight for the millions of others whose lives have been impacted by this disease. #ENDALZ