In the past, Mom happily filled her days taking care of her family and running the household. With the exception of the occasional housecleaning service, she didn’t hire much help. The thought of having someone from an agency with her all day to help with chores didn’t appeal to her at all.
It is typical in the very early stage of dementia to have difficulty with everyday tasks. Mom was starting to routinely misplace things, had trouble following recipes, paying bills, and remembering appointments. If someone with early dementia lives with a spouse or someone else who is there most of the time, this stage is manageable. Mom was by herself after dad died, so I knew we had a 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 mild cognitive impairment, she saw no reason to have someone she didn’t know come in to her house. I understood why she felt that way.
The problem was that 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.
This caregiving help issue wasn’t easy, and Mom wasn’t in favor of it. Regardless, 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 and I felt very conflicted.
After reflecting about this part of her nine year journey through Alzheimer’s, my entire family has agreed that even though she 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.
Suggestion: 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.