This story below appeared in The Huffington Post back in June 2016. I have since completed a book of my mother's battle with Alzheimer's, Rusty's War: A Battle of the Mind. It's the painful story of my mother's battle with Alzheimer's and how she came to depend on her dog, Rusty, to cope during the early and moderate stages of this dreadful disease. Trust me when I tell you, a lot has changed since this story originally appeared, much of it so painful to share, I was somewhat reluctant to have it printed. Only after much deep thought and reflection, did I decide the details of our private lives could help others dealing with the devastation of this nasty degenerative brain disease.
The imagery that lie before me seared into my subconscious tormenting me for weeks — that gray, rotted look of cauliflower representing parts of my mother’s dead brain cells. The reduction in brain size rendered me speechless. Even a faux neurologist like myself could tell those neurons no longer fired. On the wall, next to the lighted board that held Mom’s MRI results, were several photos of a healthy brain. The contrast played like a cruel joke.
I sat silently as the doctor tried to soften the blow. Mom on the other hand looked befuddled and confused, unsure what all this meant. The doctor continually grabbed her hands, stroking them ever so gently in a calm, reassuring voice. Mom had not grasped the gravity of the situation and wondered why the doctor spoke to her so lovingly, like maybe they were going on a date. She was never one to truly comprehend even basic scientific knowledge, trusting the medical expert to tell her what to do in layman’s terms.
I thought Mom still had a little bit of time before she lost what was left of her memory; after all, she still had decent cognitive function. What led us to the Cleveland Clinic in the first place was her dogged determination to find out why she couldn’t remember certain aspects of her life. It took three years of fighting with multiple primary care physicians before we got a referral to the clinic. The primary care physicians thought mom’s memory loss was nothing more than the rants of an old woman — 72 at the time — but mom knew better.
It fell to me on the drive home to explain Alzheimer’s in terms Mom could easily comprehend. She didn’t understand things like degenerative disease, and clinical explanations like plaques, tangles and neurons. I distilled all this medical jargon into easy to understand terms, leaving out some of the gory details. Once I finished my simplistic explanation, a river of tears cascaded down her face. After arriving at her home, we both sat in silence looking at the television, me afraid to speak for fear of upsetting her further.
I left for home well after dark, my mind racing from sadness to the monumental task that lie ahead. I’d seen the devil’s disease at work from a distance. My grandmother suffered from Alzheimer's dementia, and later my grandfather.
How long would it be before mom would start losing the ability to care for herself? The answer came just ten days after that early April 2013 diagnosis. The panic was real as she sat in her parked car unable to figure out which key cranked the ignition. She called the only number she could remember without looking in her phone book — mine. I removed the car from her home within an hour. She never drove again.
From there, the deterioration in cognitive function proceeded gradually. To an outsider looking in, it might have been imperceptible, but now I was on alert. The slightest hiccup in her normal routine became a cause for concern.
Nearly four years later, Mom now lives with me and to say it hasn't turned my life upside down would be a gross understatement. No matter my individual circumstances, Mom has deteriorated so quickly, I'm getting close to the point where a memory care facility, a group home, or a full time nurse is required---none of which I can afford.
Please get a copy of Rusty's War here on my website, or at your favorite retailer. It's an eye-opener you won't want to miss. I don't want this ravaging disease to sneak up on your family like it did mine.
A portion of the proceeds from my book, along with my speaking engagements are donated to Alzheimer's care and research.