What a professional caregiver should never forget
Elaine C. Pereira
Pat Summitt and Ronald Reagan are two very prominent people diagnosed with Alzheimer's. The public disclosure of their illness and subsequent battles are legendary. Anyone in the healthcare field caring for these well known figures would be cognizant that their delivery of care and personal interactions were always professional.
Let me share the story of another real life person with dementia—Elizabeth “Betty” Ward. She was born in 1924 and was five when the Great Depression began. She attended Purdue University, earned her bachelor's degree in chemistry and worked at Upjohn Co. in Kalamazoo, Mich. There she met and married a serviceman, Wayne Ward.
Their first son Jerry was born in 1947, followed by David. In August 1951, 19-month old David was killed in a tragic car accident while Elizabeth was pregnant with their third child, a girl. Betty suffered considerable facial and head injuries that would later manifest as Meniere's Disease.
Betty earned her master's degree and taught high school calculus until her Meniere's eventually caused profound deafness, which forced a medical retirement. In 1995, Wayne sustained a stroke, which suddenly cast Betty into a nine-year role as a selfless caregiver. Needing more help, they moved into an assisted living facility in 1999.
On New Year's Day 2001, her son's wife Wendie was diagnosed with Glioblastoma succumbing one month later. On Mother's Day 2003, her son told her about his diagnosis with Stage 4 esophageal cancer! Her husband died on Easter 2004 and her son that very same Christmas. Soon after, Betty began her erratic, slow journey through dementia, accompanied by her daughter.
Betty was my mom!
Gradually, Mom's goofy, illogical behaviors escalated. My once brilliant math major mom literally wrote nine checks to her insurance company and later couldn't even add 2+2. Her kind, loving persona dissolved into a rage of paranoia accusing "them" of stealing her pants or a nail file! She became an unsafe driver, meandering in lost oblivion for 20 miles.
Regardless of your role providing assistance to another, never forget that the screeching, defiant woman whom you are helping to dress is someone's daughter, mother or best girlfriend. The man who desperately needs assistance with oral hygiene but has his teeth clenched tight refusing your help, might have been an administrative CEO.
There are no consistently effective responses for someone anguishing with confusion and unhinged by events they believe to be real. But there are definitely inappropriate ones. It takes inordinate patience to keep redirecting someone, to repeat the same information over and over, to remain composed when a person is hostile.
Dementia is an insidious disease that robs us of our loved ones, turning them into someone no one recognizes. It manifests as a smoldering fire, choking one's orientation to time, pretzel twisting the gray matter and fogging one's judgment.
As an occupational therapist, I knew firsthand what I should and should not see, hear, or experience at mom's assisted-living center. I was always listening in on employee conversations, watching for eye rolls and observing their touch when providing physical care.
What I try to remind professional caregivers is:
- Never forget that every resident has a past, a story worth hearing if they could only tell it.
- Never forget how you would want a wheelchair bound individual to be treated if they were your mother, brother or friend.
- Never forget that every resident is Pat Summitt or Ron Reagan to someone else.
Elaine C. Pereira is the author of I Will Never Forget: A Daughter's Story of her Mother's Arduous and Humorous Journey Through Dementia.