Watching My Parents Decline While
Living Out of State - Part 1
Written by Charlotte Bowles Baker
In June 1988 I was home visiting my family. Daddy was at home. He was supposed to go to work at the drug store around 1 pm. He didn't arrive so Robert called to say he wasn't at work. When Mama told Daddy that he was suppose to be at work, Daddy threw down whatever was in his hand and left for work. Daddy was a workaholic; he would never forget to go to work. Since retiring, he worked for Robert at the drug store. Mama told me that he had driven the wrong way on the street in town and sometimes got lost; he just kept driving until he found his way. Thus began a journey of 20 years of watching the decline and ultimate death of both of our parents with dementia.
Robert has asked me to share my feelings and experiences of living away from my parents during this difficult time. Keep in mind the time frame for my experiences is the 1990's and 2000's. People didn't talk about dementia much. Someone might be said to "have hardening of the arteries". There was not a lot of literature on the disease. The internet was just becoming available when Daddy was diagnosed in 1991. As I see all the advocacy for dementia going on today, I marvel at how much is available to help PWD and their care partners learn about the disease and how to live with it.
My initial response was one of denial with Daddy. I couldn't stand the thought of Daddy not being "Daddy." He was a wonderful father and a man full of wisdom. I had the utmost love and respect for him. To think that I would be loosing him bit by bit was almost unbearable to consider. When I would visit my parents, I would take them to their siblings and other relatives. I would tell those who were not aware that Daddy had memory problems. I have to say that Daddy made this journey as bearable as he was able to do. He had his sense of humor for quite awhile. One time he said, "I've been down in the mud, but now I'm happy as a pig in a pig pen." He said it wasn't okay that he couldn't remember; but, there was nothing he could do about it, and so he accepted it. On some occasions he would say, "It is so embarrassing not to be able to remember". I was so sad to know that he knew he "didn't know".
At some point in Daddy's disease, Robert took Daddy to Emory Hospital's Wesley Woods Geriatric Center. Daddy prepared for these visits. I think he went twice. On the trips to Atlanta, Daddy would practice what the day of the week was as well as answers to other expected questions. I see this from two perspectives. Daddy always went into anything prepared all his life. He knew he had memory problems now so he prepared for the tests he was facing those days.
Visits with my parents were physically and emotionally exhausting. I knew Robert had his had full with his own family and his business. He had the added responsibility of taking care of our parents' monthly business matters and making sure they were okay. He was their "go to" person. Mama got some relief from the day to day care of Daddy because Robert let Daddy come to "work" for him part-time well beyond the time that Daddy was capable of being helpful. I struggled with sharing with Robert needs that I observed during these visits because I knew I was the child who lived away and didn't know all that was going on day to day. I did not want to be perceived as the child who breezed in and "had all the answers". That is not to say that family ever gave me cause to think they viewed me that way. I knew I didn't have all the answers. But consecutive 24 hour days of living with my parents several times a year revealed needs that could not be observed by phone calls and "pop-in" visits. Daddy was a master at covering his condition for short periods of time.
©2015 Charlotte Bowles Baker
There's more to this story which will be covered in another blog.
Robert Bowles, Jr.