Meryl Comer wrote her personal 20-year experience of caring
for her husband in her book “Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s” (2014). Her husband Harvey had early onset Alzheimer’s at the age of 58. For 20 years,
and still as the book concluded, she cared for her husband, and in the latter
years she was also caring for her own mother, another victim of
Alzheimer’s. How she held up and endured is beyond me. She states time and
again, “The man I live with is not the man I fell in love with and married.”
The book is a dedication to what stay-at-home care entails.
She would know. She lived it. And in the latter years when she juggled care for
two Alzheimer’s loved ones, she also juggled the demanding new position of
President and CEO of the Geoffrey Beene Foundation Alzheimer’s Initiative, a
position that she was qualified to hold after her years of dedicating her own
life for the round-the-clock care of a high-demand husband-patient (and also mother) who could no longer
return her love, affection or, even in the latter seven years, words.
Her husband was slowly robbed of something we all take for
granted: the ability to navigate the mundane activities of daily
living—bathing, shaving, dressing, feeding, and using the bathroom. His inner
clock was confused and couldn’t be reset. His eyes were vacant and unaware—as if
an internal window shade veiled access.
Neither a scientist nor a neurologist, Meryl spent close to
two decades trying to decipher what was going on in her husband’s head and to
grasp how hard and unfair it was for such a highly educated and acclaimed
scientist to lose pieces of his intellect and independence as the circuitry of
his brain misfired and corroded. No new short-term memories stuck: his internal
navigational compass shut down. His disease became Meryl’s crossword puzzle.
Meryl was long forgotten by Harvey, yet she
became his constant companion, his copilot, his guardian. She bore all the
burdens for his care, made all the decisions for them both, the demons and
terror of Harvey’s world became hers. As a caregiver, she took the brunt of the
disease. She became the knowing victim, the mental survivor of the disease, and
the one who struggled to find hope amid the black shadows of the disease.
To find hope and search for answers, Meryl lined her
bookshelf with tomes on dementia care. She came to know that the disease
affects a reported 5.4 million people in the United States and 44 million
worldwide. Like a stealth invader, it quietly dements aging populations
globally while quickly pushing past cancer and HIV/AIDS as the most critical
public health problem of our time. Yet, an estimated fifty percent of those with dementia
never get diagnosed.
These are horrendously high numbers, and they are rocketing more and more rapidly. What is not typically figured in the statistics is the vast
number of Alzheimer caregivers, like Meryl. More that 15 million caregivers are
the unintended victims of Alzheimer’s, and add that number to legions caring
for loved one—young and old—with diseases of the brain, traumatic brain
injuries, and other chronic diseases complicated by a memory disorder. Caregivers
like those and Meryl speak the same language, and so she became the president
and CEO of the organization that reaches out to Alzheimer caregivers. She with
her experience and her 20-years of continuous devotion and dedication gives insight
and understanding to the legitimacy of life behind the devastation of
Alzheimer’s she has experienced firsthand. So with Harvey's slow decline—both mental
and physical—Meryl realized that she knew Harvey better as a non-reciprocating
individual, better as an individual who became personality-less and virtually
unresponsive. Indeed, her life with 24/7 care became a slow dance and her husband
became a stranger. They both were robbed of their relationship, their emotions
and their shared joys, and even after 20 years the dance is still continuing.
