Missing the Warning Signs of Dementia

This is not a critique of family caregivers who are doing their best to make decisions for their aging loved ones, but rather an honest look at how I dismissed the obvious warning signs of my mother’s dementia at her expense. I share my experiences so others can relate and move out of denial into proactive mode. 

Goofy behaviors. Listen and Learn.
In retrospect, I honestly don’t understand how I explained away my mother’s out of character behaviors. Initially the irrational moments were so infrequent, I labeled all of them collectively as “goofy” as if they were curious and cute. In truth, indicators of early dementia are so insidious they are often completely overlooked and/or explained away by other factors. Like the symptom silent killers of high blood pressure or some cancers, the body’s early warning system of Alzheimer’s disease is absent.  

The first indication of my mother’s Alzheimer’s was in February 2005, after her son, my brother, died of cancer. My dad also passed away the year prior. Mom had flown from her place in Michigan to my cousin Mike’s home in Arizona for my brother’s memorial. I was barely in the door at Mike’s when he took me aside and whispered, “I’m worried about Aunt Betty. She thinks she’s back home and is looking for her apartment!” 

I attributed Mom’s confusion to grief. Tragically, I failed to comprehend that regardless of her emotional trauma, she should have remembered that she had flown three hours from wintery Michigan to warm Sedona. She should have recognized that Mike’s surroundings looked nothing like her own.  She should have expressed sadness, grief and tears, and I should have been listening. 

Had this genuinely been a strange but isolated incident, there would be nothing more to say. However, if a loved one behaves alarmingly, my advice is: 

1. Note the first bizarre behavior
2. Really pay attention to repeated oddities 
3. Step out of your comfortable but blinding veil of denial and be prepared to act as needed to ensure their safety

If you can’t distinguish the difference between age-related fluctuations in demeanor and outright breaks from reality, however brief or infrequent, seek out professional consultants who can, and then don’t dismiss their recommendations. Unfortunately, I only heard exactly what I wanted to hear and not the truth!

Mom’s episodes of odd remarks and confusion continued for a few years, steadily increasing in frequency, duration and aberration. She accused the very tall, heavy-set cleaning lady of stealing her size 4, petite wool pants. She fired her financial planner because she believed he had electronically forged her signature! “Someone stole seven dollars-worth of stamps” and “black Rockport shoes” both of which I found where they’d always been. 

Suspicion and paranoia are not a part of normal aging. They are evidence of a brain run amuck.  

Staff at my mother’s senior apartment complex observed and accurately identified her irrational conduct and shared their concerns with me. Repeatedly in fact. I repeatedly blew them off. 

Since mom and I lived two hours apart, I didn’t witness her day to day personality deterioration and breaks from reality as often as the staff did. Unfortunately, they were just voices on the phone without faces or names. I knew my mom. I didn’t know them so I didn’t trust them. 

And then the proverbial plot thickened. Mom wandered outside through “massive road construction equipment.”  She ran through the lobby “jabbing her finger” at others. She got lost driving to the dentist a mile away and ended up two counties over. She described “hallucinations” and had an unmistakable “delusional episode.”

Finally, a cascade of dramatic events in rapid succession brought my epiphany. 

What I should have done and my advice:

1. If others express concerns, they are probably correct. They don’t have an agenda to lie.
2. Ask for an independent evaluation and be prepared to accept the results. 
3. Make face-to-face appointments and leave your cynicism at the door.
4. Ask for “irrefutable video evidence” to overturn your blind bias.   

Only in retrospect do I realize how my unwitting mistakes were still mistakes. My naïve errors in judgement could have had catastrophic effects. Fortunately, the concerned voices on the phone recognized what I couldn’t and kept my mother safe when I didn’t.  

Elaine C. Pereira, MA OTR/L CDP CDC is an author, speaker, certified dementia practitioner and caregiver. Contact her at elainep@iwillneverforgetbook.com.