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 the 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. Slowly she became unable to read or write her name, converse in a group or follow a conversation very well. She began to forget what she was talking about and became unable to find even the simplest words to get her point across. In the last year she has lost the ability to shower and dress on her own and more recently became unable to use the bathroom or eat without assistance. In short, my mom cannot do anything for herself, which makes her feel like a child. She also began to develop severe paranoia and agitation resulting in many catastrophic meltdowns. Unfortunately, my dad is no longer able to care for her on his own. It is awful to see them both be ravaged by this disease. One as the patient and one as the caregiver.
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 heartbreaking. He is a healthy and active 64 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 had it any other way, but this responsibility is ultimately too much. We see that his health and their relationship is suffering from the stress of caregiving. My sister and I have always had a strong relationship with our dad, but it has grown even more as we support each other.
In the last four 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 attended the educational meetings and met 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.
In 2009, 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 such a rewarding experience that I quickly signed up to run again with the team a second time in 2010. It was an honor to run my first two marathons 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. This year I am expecting our second child on December 31st so I am not able to run the marathon. Instead, my son and I have been watching the bags during the team’s practices. It has been a great way to stay involved. We will also be out there on the course on November 6th cheering for these amazing runners who are running for all those affected by this awful disease. If you are not running please come join us at the official Alzheimer’s Association Cheering Sections on 110th and 1st (west side of the street) and 5th Avenue (east side of the street).
Thanks, Rachel, and thanks for the bag watch. It is a terrible journey.
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