Mom Didn’t Care for Caregiving

In 2005, my Mom was in the beginning stage of Alzheimer’s disease, but none of us knew anything about that disease. After reflecting about this part of her nine year journey through Alzheimer’s, my entire family has agreed that even though Mom didn’t want help that first year, we should not have allowed her to live by herself as long as she did.

My role as a daughter was changing fast and it wasn’t easy for me to impose rules or interject authority into Mom’s life. I had to learn how to do that. It wasn’t natural, but nothing at all is natural about Alzheimer’s disease.

Mom was starting to routinely misplace things. She had trouble following recipes, paying bills, and remembering appointments. If someone with early dementia lives with a spouse or a loved one, this stage is manageable. Mom was by herself after dad died, so I was starting to realize that we had a big problem.

It seems that some people know when they need help because of memory difficulties, but some people do not. Mom did not. During the first year of Mom’s dementia, she saw no reason to have someone she didn’t know come in to her house. I understood why she felt that way, but it was becoming a matter of her safety. She could forget to turn off the stove or iron. She could walk out the door, wander and get lost. If she had someone with her, they could make sure she took her pills daily and in the right amounts. They could drive her to the store and help with errands.

I felt very conflicted. In spite of Mom’s feelings, I knew I had to start the process of caregiving. I found an agency and set up some interviews. Sometimes it went well. Other times not so well. I would hire someone, give them a list of instructions or things they could do to help, but after they left, Mom would call me to complain that they just sat there. At this stage there wasn’t much to keep them busy. I couldn’t force Mom to enjoy the person she was with, but I knew that having a caregiver was in Mom’s best interests.

Looking back, getting a caregiver was the right decision. Sometimes you have to do what is right, and not what your loved one wants. Clearly, Mom didn’t want help but she needed it to be safe. Later, as her disease progressed and we had to move her from her home to an assisted living facility, we found caregivers she loved dearly and they truly became part of our family.