How I May Have Delayed My Mother’s Early Onset Dementia Diagnosis
By: Martina Price, M.A., CCC-SLP, Therapy Program Manager
Around six years ago, I realized that my highly intelligent, superbly organized mother was changing. This change initially was presented as typical signs of aging (e.g., more problems multi-tasking, repeating questions, and misplacing things) and quickly evolved to forgetting how to get home from the elementary school she had worked at for over 20 years. I immediately began searching for resources (e.g., support groups) to assist my mom better, and there were slim to none for a woman in her early 60s. So, I, her SLP daughter, began giving my mom a plethora of cognitive assessments under the guise of needing a test subject for a new assessment at work.
Some time passed, and a series of events happened (e.g., falls over rugs, forgetting a route to church, and difficulty managing money) before I could get her to accept her new deficits and seek the help of her primary care physician. We finally had an appointment with her long-time doctor, who began administering a Mini-Mental State Examination. My mom began answering the questions before the doctor could finish the question. My mom achieved a score that was within normal range, 25/30. I talked to her doctor and told her what behavioral and cognitive changes my family and I had observed. My mom denied most of what I reported because she was in denial and hadn’t accepted what was happening to her. She could still teach her beloved kindergarteners and do things that were her normal routine but could no longer efficiently manage simple changes in her routine. Giving someone a ride home after school could result in becoming lost in a city she’s lived in since the 1980s. My mom’s PCP believed me, and we received a neurological referral.
At the neurological appointment, my father and I accompanied my mom. We were called into the exam room, and my mom aced the SLUMS; drawing a perfect clock reading 10 minutes to 11 and talking about Jill the stockbroker from Illinois. Again, she was answering before the doctor could complete his sentence. She had memorized the test because her daughter, the SLP, had decreased the test validity due to constantly over-testing her. The neurologist began administering the MOCA, and my mom passed with flying colors again. The neurologist described my mother as neuro-typical, and we were dismissed. The doctor gathered his clipboard and prepared to exit the exam. I didn’t give up. I followed him out and explained what was going on and how I had over-SLUMSed, over MOCAed, over MMSEed my mom. He listened, was receptive, and scheduled my mom for imaging and follow-ups, which resulted in my mom’s formal diagnosis and appropriate treatment.
That day I learned to separate the “SLP-me” from my mom’s “daughter-me.” She’s still my mom. Her personality is different, she needs reminders to eat or to take her medications and needs more help during shopping trips, among other things. I mourn the loss of my mom’s fierce independence but rejoice in the lucid times I have with her. I am learning to be more patient and getting to know my new mom. On my mom’s new journey, it is my job to be her daughter, her advocate, her chauffeur, her doctor appointment buddy, or whatever she needs her DAUGHTER to be. It is not my job to be her SLP.