On the Other Side of the Wall: Where Am I?

   One of the phrases Grandma used most often while she was living with us was "Where am I?" She was confused about her whereabouts but just imagine if she was using the question to ask herself where the heck she, as a person, really was. Like where did she go? This is a question I'm sure most loved ones ask who see Alzheimer's first hand. This is a question that stirs up a variety of emotions and ultimately leads to a form of grief that your mother or grandmother is no longer who she had always been. In a care-giver's mind is that person still there? In later stages of Alzheimer's Disease the brain has deteriorated enough that a person can no longer converse or interact with his or her surroundings.
   As we took are of Grandma two schools of thought floated to the surface and affected our styles of care-giving. One perspective was that Grandma was still there somewhere under the layers of her dementia; her true self was there. The other perspective was that she was not there; her brain had deteriorated so much that she was truly not herself any longer and was never coming back. When I looked into my grandmother's eyes she was not there. Instead of a cheerful light there was a dark and blank sort of sheen. It was very clear to me that we had lost Grandma. As much as I hated Alzheimer's for doing this to her I didn't hate her but viewed her as a victim of a disease. It was not an emotional upheaval taking care of her because she was now a person needing care not the loving grandma from my childhood.
   The other perspective, very different from my own, was that Grandma was there but not able to respond. I have to admit that when people treated her like she was still there it came off as weird and fake; as if they were talking to a doll that was actually a person. It was annoying to overhear someone else talking to her in a one-side conversation as Grandma sat there with her empty eyes. I wonder why that was so irritating to me. I think what bothered me was the backwards idea that anyone talking to Grandma as if she was still there thought they were doing it for Grandma. But it was clear, there was no guess work. She was not in a coma somehow hearing us. Anyone talking to her like a doll was doing it not for Grandma but to feel better for their own self. It wasn't real. It was just someone trying to pretend Grandma could understand a conversation that meant nothing to her. 
   Regardless of how you see a disease, care-giving should be just that: providing care. The person's true self may have vanished but a human is still lying in the bed needing your respect. My mother did an outstanding job maintaining a consistent level of care for Grandma all the way to her death. It didn't matter where she had gone. She was still a person. She still needed our care.