Written by: Charlie Johnson
In this 5-part series, Charlie shares his experience with his mother and her journey with Alzheimer’s.
We worked so hard, the whole time telling ourselves we were doing the right thing, pretending we understood dementia and were professional caregivers. But we knew, we knew one day there would come a point when our expertise and our energy could no longer fill the ever-present demand being placed on us. Sacrifices in the name of love must now become a most difficult decision in the name of love.
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Taking care of mom and providing her with the care she deserved had become increasingly difficult. She was still living alone on the farm, if you can call it living. Her days were spent sitting in her favorite swivel, rocking chair and her nights, alone, covered by quilts from generations past.
I lived just down the road and was pretending to make a living on the family farm. My second job was that of a caregiver for my mother. For this job I had no training, except for hands on. I’m certain I made many mistakes as to how I handled her dementia, but I can proudly say mother had three good meals a day and she never missed taking her medication. Her personal hygiene, however, became an issue. Getting her convinced to take a bath nearly became an obstacle I could not overcome.
Farming 800 acres by myself, I was used to working long hours, but I was finding more and more of my time was being spent in the house with my mother and not in the fields. This only meant longer days and less time with my own family.
My day of reckoning came. It is one that haunts me and brings me to tears every time I think of it.
The day started just like any other, I came through the back door and called out to let mom know I was there, but there was no response. As I continued into and through the house it quickly became obvious this was not just a typical morning. She was not in her chair and her quilted bed was rumpled, but empty. I approached the partially open bathroom door and called out again. This time I heard movement, but still no response.
I came around the corner to discover my mother sitting naked on the toilet with her own feces painted all over her body and on the walls. As calmly as I could, I asked, “Mom, what are you doing?” She looked up at me like a child in trouble and responded softly, “I don’t know…” My response, “Well, I know we’ve got to get you cleaned up.” I scrubbed the claw-footed tub and ran her a warm bath.
It took a crisis for me to do what should have been done long before. How fortunate we were that our small town had a community that specializes in dementia and Alzheimer’s and there was a room just waiting for Mom. The day for her move came quickly. I asked Mom if she wanted to go for a drive, which she always did. Once we arrived at the location she asked, “What’s this place?” I took her by the hand, and explained I would like her to meet some people, as we walked toward the door. Once inside we were greeted by “the professionals” that knew exactly what to say and do. Mother was immediately interested in the other people and the goings-on inside. It had been a long time since she had been around any socialization.
I left her in what I knew were the most capable hands, but as I walked to the car, I felt like I had just betrayed my best friend. Had I failed, not being able to complete the task I took on or had I failed by not bringing her to this wonderful place earlier? It was obvious from her first moments there she was not just going to live there; she was going to thrive there.
As I look back it was true selfishness on my part, keeping mother at home that long. I was just not willing or wanting to give away that piece of my life I had always known. Lesson learned, it is not about us, it is about them. What is the best option for our loved ones? That is the perspective we must always keep in mind.
