It is 5:23 AM in the morning, this is the third time that I’ve been up with my mom who is increasingly deteriorating from vascular dementia and Alzheimer’s. “Oh God please God what is happening to me”, my mom says. “Did I do something wrong, am I going crazy? Please God, help me.”
Present day, my mom has to wear adult diapers with both urinary and bowel incontinence. She is extremely embarrassed by these set of circumstances. She says, “I am an 89 year old woman, I am not a child.” There are times when I hear my mom wish for her own death rather than continue to deal with the hand that she has been dealt. It is an insidious disease that creates havoc and makes it difficult for both the individual and the caregiver. If not for a loving husband and sister who pitches in, I think I would have a nervous breakdown.
It is difficult for me to watch, a once a vibrant strong African-American woman who is now confused, scared and extremely fragile. Here is a woman who said to me as a child, “You must always walk with pride and dignity because when you walk down the street you are carrying Negro womanhood with you.” She meant it because she lived it. In 1968 when there was a major teachers strike in New York city, she was one of the many parents who kept the schools open teaching their children. It was a strike that lasted several months not several weeks.
It was a strike that led many parents to fight for parental control in their schools. It led to something called decentralized schools. Almost 40 years later, the mayor of New York City used sensationalized anecdotal information to gain control of the schools once again. My mom spent almost 30 years in the school system as an assistant teacher working with difficult children teaching them to read. Not only did she do this for a living, she would tutor neighborhood children. There are many children that can point to my mother, including my own son, as the one responsible for them enjoying reading today. Not too long ago, I even met a position on my job who pointed out my mother has keeping him on the straight and now. He said your mom was Mrs. Wooten, Mrs. Wooten, Wow she used to keep me in line and grade school. I was a real menace at that time.
You would think that having worked in behavioral health care for 10 years, I would have the requisite skills to be a caregiver and deal with my situation. However, when working with your own family, it makes it that much more difficult. I am now about to take caregiver training classes on dementia from the agency that provides home attendants for my mom. It is my hope that this training will further my knowledge of this disease and provide the much-needed coping skills I need as caregiver.