Seeing Mom's Humanity First, Instead of Her Disease

Over the weekend, I pulled out the June issue of O, The Oprah Magazine. As I flipped through the pages, I came across  a feature article entitled, “The Life in There.” Based on her recently published book entitled Dancing with Rose, Lauren Kessler’s magazine article describes how she decided to take an entry-level job at an Alzheimer’s facility as a way to overcome her fear of the disease, which had been the cause of her mother’s death.  

The article recounts the challenges of working with residents at the residence facility, including Lauren’s efforts to reach out to the residents on a regular basis. She notes in the article how she has moved away from identifying someone based first on the pathology (in this case, Alzheimer’s), and instead has focused on making “the person come first,” a concept she read about in the book, Dementia Reconsidered, written by psychologist Tom Kitwood.

Each person that Lauren describes in the magazine article is seen as a person first. That person might not know the difference between hot and cold, might have emotional outbursts, or might now talk a lot (instead of maintaining a taciturn composure).  Yet, Lauren describes meeting each person in his or her own reality and helping each through the ever-changing issues that happen during a day in an Alzheimer’s residence.

Unfortunately, many people still view those who have Alzheimer’s through the lens of the disease, instead of focusing on the characteristics and history of the person. So how do you help people -– and in some cases, nursing home staff members -– make this transition to seeing your loved one as a person who happens to have dementia?

I think I have been successful once in helping a professional caregiver who worked with Mom make that paradigm shift. When Mom first came to the nursing home’s secure unit, a few of the nurse’s aides treated Mom as a patient with Alzheimer’s, instead of as a unique human being with her own formative history, habits, likes and dislikes. At that time, many of the staff who worked with her in these roles were African Americans. After watching one particular aide order Mom around (and then get frustrated when Mom stubbornly wouldn’t do what the aide demanded), I decided that it was time to share a story that illustrated Mom as a person.

I waited until a few days later when another aide (also African American) was on duty. This particular aide worked smoothly with Mom and seemed to focus more on Mom as a person. When she came in to assist Mom on a task, I carefully broached the subject, asking Mom whether she had told this aide the story about Mom enrolling me at my new elementary school in West Texas in 1970. When Mom said no, I proceeded to recount the tale of how Mom had asked that I be placed in the class of whichever teacher had the highest academic expectations for students. The school’s office staff reported that, in their opinion, that teacher was an African American man; would Mom have any concerns about placing me in his classroom? (Note that we were living in Texas at the time and the Civil Rights issues – such as segregation –  were playing out across the Lone Star State.)