Stories from Caregivers: Jeannie from VERMONT
VT
Jeannie
FROM VERMONT
My parents divorced in 2011 after 36 years of marriage. My mother had a difficult time coping with this reality and became depressed. Mom moved into an apartment, and within a year, my siblings and I noticed changes in her behavior. My once cautious mother had become rash, making impulsive purchases and decisions. She stopped sending regular email updates, and when she did, her thoughts appeared jumbled. We encouraged her to move closer to family, but she was adamant about living alone, so we called and visited regularly to ensure her safety and well-being. We conveyed our concerns to mom's doctor, but she felt that mom was only dealing with depression, and just needed time to heal from the divorce. In February of 2013, mom confessed that she was having trouble reading. We arranged for mom to see her primary care doctor and an ophthalmologist. Vision problems we ruled out and a mini mental exam was performed (normal), so mom's doctor ordered a brain scan. The MRI showed anomalies so mom was referred to a memory specialist for further evaluation. A little over a year ago, our family received a long-awaited diagnosis: Frontotemporal Dementia (FTD). FTD affects the brain's frontal and temporal lobes, which influence planning and judgment; emotions, speech and speech comprehension; and certain aspects of mobility. It's a devastating diagnosis for a disease that progresses rapidly and has no cure; however, having a diagnosis and being able to research and read about the disease gave us a greater understanding of what our mom is experiencing. Learning about FTD also helped us communicate more effectively with our mom and in a way that is less frustrating for her. Following the diagnosis, mom moved in with one of my sisters. She began having difficultly recalling the right words for common household items, the names of people she interacted with frequently, and her remembrance of timelines became skewed. My sister did in-home care for five months, but it soon became clear that a more permanent solution was needed, and we began looking at residential care facilities. Mom celebrated her 70th birthday last October, and has been living in an assisted living facility for nine months. While her demeanor continues to change, she's positively bubbly every time I see or speak with her. She loves having her own space and is thriving in her new environment. She's well-liked by everyone, and the staff in particular adore her. It's hard though; this was the first year mom didn't call on my birthday. In fact, making phone calls is something she no longer has the forethought to do. This is one of the many changes my family will endure in the years to come, and difficult as it may be, so long as our mother remains happy and lives comfortably, I think we can learn to adjust!
