At 61, my mother, Mary Lou Thompson, was diagnosed with Early-Onset Alzheimer’s. I saw the warning signs for years, but my family dismissed my concerns. My mother had been an active stay at home mom, a voracious reader and an active volunteer. In 2003, while planning my wedding, I noticed that my mother’s demeanor was changing. She seemed confused and intimidated by organizational tasks she had thrived on for so many years. In 2004, I became increasingly concerned when she got lost driving on a familiar road, after which she became flustered and made excuses. There were countless other signs as well.
Although there was no cure for Alzheimer’s, I knew that we could not ignore the problem and had to seek a diagnosis quickly. In 2006, I contacted the NYC Chapter of the Alzheimer’s Association for help finding someone to make an accurate diagnosis. The Chapter was helpful and supportive, directing me to a great doctor and clinic. The social workers at the Chapter helped me strategize how to approach my family and stressed the importance of seeking medical attention. After some convincing, my family agreed. Together went to the Memory Disorders Clinic at Columbia University, where my mom was diagnosed.
Though the initial stages were heartbreaking, it has been most painful to watch my mom’s personality change, and watch her lose her identity. Today, she cannot read or write her name, converse in a group or follow a conversation very well. She forgets what she is talking about and cannot find even the simplest words to get her point across. She can no longer prepare even a simple meal for herself and has difficulty getting dressed. In short, my mom cannot do anything on her own, which makes her feel like a child.
One of the terrible things about Alzheimer’s is its impact on the patient’s primary caregiver. Watching my mom’s disease progress at such a young age has been hard on the family, but seeing the impact on my dad’s life is tough. He is a healthy and active 63 year old, he had retired just before her diagnosis in order to begin the exciting “Golden Years” ahead. He gave up that dream, instead shouldering the care-giving responsibilities as her primary care giver. He would not have it any other way, but this responsibility is increasingly taxing. He is with her almost 24 hours a day and it is a challenge for him to maintain a balanced lifestyle.
Recently, my sister stayed with my mom while my dad went away for a couple of days. When my dad returned, my mom got angry with him, accusing him of leaving her for weeks. He knows this is a result of the disease, but he feels guilty and helpless as we all do. My sister and I have always had a strong relationship with our dad, but it has grown more so as we support each other.
In the last three years, while my mom’s condition has deteriorated, our ability to deal with Alzheimer’s has improved. The reason for this is the support of the Chapter. We attend the educational meetings and meet with social workers who specialize in helping Early-Onset patients and their families. We learn strategies to cope with the changes around us, while gaining an understanding of what is physically happening to her brain.
I joined a support group for daughters of Alzheimer’s patients. Prior to joining, I did not know anyone with a parent suffering from Alzheimer’s. It was comforting to meet and spend time with people who understood what I was going through. As a group, we have helped each other through many milestones. I joined shortly after having my first child, and while this was a joyous occasion, the group offered support when my mother was unable to help me. I would not want to go through this experience without the help of the Chapter staff and services for which I am truly grateful.
Last year, I joined the chapter’s Junior Committee and the inaugural “Run2Remember” Marathon Team. Running in the marathon was, in a sense, like caring for an Alzheimer’s patient. Both require a deep level of commitment and discipline, and it is undoubtedly a long (often painful) process that you must plug away at day in, and day out. It was an honor to run my first marathon in the city that I love, on behalf of my mom, my dad, and the millions of others affected by Alzheimer’s, who must trudge through their own “marathon” every day. I am excited to be running the marathon again with the 2010 Chapter team.