Updated: Sep 16, 2021
I have never understood when people say, "She is not the same person anymore; she is no longer there," when talking about someone with Alzheimer's or dementia.
I ask myself, "Who do they think she is? Where did she go? Is she not sitting right here, with the same beautiful smile she always had? Isn't she the same person God knew before he created her?"
“ Who do they think she is? Where did she go? Is she not sitting right here, with the same beautiful smile she always had? Isn't she the same person God knew before he created her?"
When people say these things about another person no longer being there, are they just making excuses for not talking with them, relating to them, visiting with them -- or even trying? It is so much easier to say, "It doesn't matter if I visit; she's not there anymore, anyhow," than it is to actually visit and work just a little harder to bring joy to a person, maybe known a lifetime, if even for a few minutes.
In 1997, Tom Kitwood wrote a seminal book titled, Dementia Reconsidered: The Person Comes First. In it, he discussed how individuals living with dementia have an enduring sense of self, and maintain feelings, preferences and personality characteristics until the end of life. Kitwood refers to "rementing," or observations that a measurable recovery of powers that had apparently been lost is possible in dementia patients. Kitwood discusses the critical role of psychology and relationships in making rementing possible.
"If personhood appears to have been undermined, is any of that a consequence of the ineptitude of others, who have all their cognitive powers intact? If uniqueness has faded into a grey oblivion, how far is it because those around have not developed the empathy that is necessary, or their ability to relate in a truly personal way?
If we follow the development of any person’s dementing condition closely, again and again we will come to see how social and interpersonal factors come into play, either adding to the difficulties directly arising from neurological impairment, or helping to lessen their effects…In very many cases, we find that the process of dementia is also the story of a tragic inadequacy of our culture…our medical system and our general way of life."
I know from the time I spent caring for my mother, who had Alzheimer's, that while she may not have remembered who a person was, she responded to love. She knew it when she saw it on the face of another, or felt it when they held her hand, or heard it when they laughed at a story they were telling. It did not take a lot, and the joy that she received from it was immeasurable.
When she still had the ability to frame a question, she would ask, "Where did my friends go?" She felt their absence, and the absence of their love and joy around her. When someone we met in a store might ask her a question, and she tried to respond, but the answer came out unintelligible, she felt sad when they cut her off and turned away.
I wrote once that "Alzheimer's may be the loneliest disease." A person suffering with the disease loses her memories, no longer knowing anyone around her, and yearning for the people she does remember, such as a long lost mother. But, she also loses the physical presence of people in her life -- friends and family who used to spend time with her, but no longer do.
I am not writing this to provoke feelings of guilt for not reaching out to a friend with Alzheimer's, for example. Rather, I am writing this to inspire people to know that their efforts do matter. Even the smallest thing can make the world of difference, when the world of a person with Alzheimer's has shrunk to a kernel of what it once was.