by James T. Ingram For The St. Louis American
“Do not ask me to remember. Don’t try to make me understand. Let me rest and know you’re with me. Kiss my cheek and hold my hand. I’m confused beyond your concept. I am sad and sick and lost. All I know is that I need you to be with me at all cost.”
So begins the “Alzheimer’s poem” by Owen Darnell which so aptly and powerfully describes the gradual decline and loss of a loved one to the ravages of this dreaded disease.
I recently lost my dear mother following over a decade of the challenges associated with juggling the awesome task of managing her gradual decline, related caregiving and decisions pertaining to the long goodbye or longest day that is Alzheimer’s disease.
Admittedly, it was difficult watching the very person who loved me unconditionally, was my first teacher, who managed our household, who raised my siblings and me, to begin to gradually slip away, forgetting basic things and finally even her own husband and children.
At first, I attributed her forgetfulness to simply growing older and occasionally having a senior moment. But then, following a routine drive in her car which she’d done for 50 years, she was missing … for nearly 18 hours, only to be found by the Hillsboro, MO police, in a community which my mother had never visited and over an hour away from East St. Louis. That’s when I knew we had a problem.
As in my eulogy for my mother, I reflected, my mother loved driving to and attending church every Sunday. She was a devout Christian and modeled that lifestyle in her care for the least of these, be it hungry children, senior citizens or providing a drug addicted former classmate with a massive turkey sandwich on Thanksgiving.
Yet, when I was forced to take my mother’s car keys and her dementia began to set in, I began to be awakened daily with sometimes threatening and profanity-laced phone calls regarding her car keys.
Literally, within months, my mother went from being Mother Teresa to Millie Jackson, using language that I never knew was even in her vocabulary. I’d sometimes laugh to keep from crying because I realized that it wasn’t my mother lashing out; it was the disease. Eventually, she forgot that she even had a car.
Then, as my mother began misplacing bills, money and frustrating my poor father, who preceded her in death because of the sheer stress of being a caregiver and watching his wife of over 50 years deteriorate before his eyes, I had to quickly research the disease, locate resources and prepare estate, contingency and end of life plans for my parents.
And it was a difficult process, discussing such things as wills and burials with a father who, at the time, was in relatively good health.
I also found that, particularly in the African-American community, there still exists a sense of denial and shame when it comes to dealing with a loved one who suffers with Alzheimer’s, especially discussing adult day care, nursing homes, respite care and other options which are shunned because of the negative stigma associated with involving those outside of the family. We must overcome those apprehensions.
Furthermore, I encourage the Black community to research the many available resources by simply going to the Alzheimer’s Association’s website at www.alz.org or call them at 1-800-272-3900. You are not alone, and the information is invaluable and lifesaving, especially if you happen to be the caregiver.
Email: firstname.lastname@example.org; Twitter@JamesTIngram.