The Unseen Challenges of Dementia Caregiving
Navigating the Labyrinth of Love and Loss in Dementia Care
The Journey Begins: A Daughter's Unfolding Realities
This personal account is drawn from a conversation with Angela Davis, a 65-year-old resident of New Orleans, who is devotedly looking after her 87-year-old mother afflicted with dementia. She reveals that the monthly cost for her mother's in-home care exceeds $7,000. This interview has been adapted for conciseness and clarity.
Born and raised in New Orleans, I attended an all-girls Catholic high school. My mother, a school teacher, acquired a house in her thirties, which I've since passed on to my son. My father, a math teacher, eventually left teaching to assist his father in a furniture transport enterprise. My parents never formalized their union.
After completing my studies at Fisk University, I relocated to Texas and later to Connecticut. My clinical fellowship at Yale University culminated in the birth of my son. I returned to New Orleans, desiring for my son to have a close relationship with his grandparents. Before my retirement, I practiced as a licensed clinical social worker in educational settings. Additionally, I've generated income from real estate, possessing a portfolio of over a dozen rental properties.
When the Mind Fades: Recognizing the Signs of Cognitive Decline
Being an only child has significantly intensified the challenges of recent years. My parents lived independently for a considerable period. Approximately eight or nine years ago, I began to observe alterations in my mother's conduct. On one occasion, while driving behind her, she missed the turn-off for her residence. Another time, she contacted law enforcement, claiming her dog had been stolen from her car, despite the animal being safely at home.
Subsequently, her condition deteriorated rapidly. She started accusing me of attempting to seize her home and finances. She altered the locks, a fact I discovered only after three days of no contact. I gained entry to her house to find her collapsed on the floor. She remained hospitalized for roughly two weeks, with limited access to services due to her failure to maintain Medicare premium payments. This occurred about two and a half years ago. Her dementia diagnosis was confirmed in February 2024.
The Unwilling Recipient: Resistance to Professional Care
I briefly placed her in a care facility, but it proved unsuitable. The facility asserted that my mother required services beyond what was initially agreed upon, demanding an additional $2,000 for expanded care. Consequently, I brought her back home, where she has resided since. I have endeavored to ensure her comfort to the best of my ability.
I engaged a few caregivers. The most recent one was exceptional, but my mother eventually expressed a desire for her departure. In the past three months, she resorted to rolling up paper and igniting it, driven by a profound craving for nicotine. I was compelled to remove the control knobs from our gas stove. My mother's godchild generously offered to care for her without charge, though I intend to compensate her $500 weekly. This situation remains arduous, as I've also assumed guardianship of my mother's dog, leading to a household with two dogs, two jobs, and a perpetually depressed mother with dementia. Her tendency to wander also poses a constant concern; she once walked a block from home, fell, and a neighbor's call for an ambulance resulted in a $4,000 expense.
Financial Burdens and Personal Sacrifices: The Cost of Compassion
Her health continues to decline, and she consumes very little food. She often refuses to leave her bed, spending much of her time on the sofa and remaining awake through the night. Since her hospital discharge, I've been sleeping on a loveseat downstairs. This arrangement is detrimental to my own well-being at 65, but it is a necessity.
Remarkably, she can recall my name, my son's name, her goddaughter's name, and her Social Security number. Yet, her memory regarding current events is inconsistent; she might name Barack Obama as her favorite president one day and claim ignorance the next. She acknowledges her condition but remains in denial about the dementia diagnosis. Her own mother suffered from dementia, and she and her sister shared caregiving responsibilities until it became unmanageable, leading to her mother's brief placement in a facility before her passing.
Finding Solace in Routine: Work as a Mental Oasis
While her income is $3,200 monthly, her care expenses alone total approximately $2,000, and household maintenance, including electricity, taxes, insurance, alarms, and her car, amounts to around $5,000 monthly. Her income falls short, necessitating my financial assistance. These figures do not encompass food, clothing, or other daily necessities. Ultimately, she contributes 60%, and I cover 40% of the costs.
I persist in working, partly for my own psychological stability. Financial gain is not the primary motivator, but additional income is always welcome. More importantly, work offers me a respite from the continuous demands of caregiving. I've also embarked on several personal journeys, visiting Jordan, Lebanon, and Tunisia, and traveling to Rome with my son.
My son has periodically visited from New York to assist, even with tasks as simple as lawn care. He was instrumental in relocating her belongings from the facility, demonstrating significant support. I view my actions as a model for my child, hoping he will similarly strive to care for me in the future. However, my philosophy has always been to live fully before a diagnosis dictates otherwise.
The Unspoken Toll: A Caregiver's Exhaustion and Honesty
The other day, I was utterly drained. Though I've never been one for naps, I succumbed to sleep on the loveseat. Upon checking my phone, it indicated 7:05 AM the following day. I hastily prepared for work, observed by my dogs. Even my mother inquired, "What's wrong with you?"
Typically, I rise no later than 4:30 AM to commute 40 miles. I attend to the dogs, and then it takes 30 to 40 minutes to rouse my mother and assist her with dressing. I am fortunate to have a flexible work environment that doesn't require strict clock-punching, or I would likely be jobless. I conclude work at 2:30 PM and arrive home by 3:30 PM, though occasionally I must show an apartment. I ensure my mother takes her medications. She struggles with eating and may forget she's eaten fifteen minutes later. I usually retire by 11 PM, with weekends offering a slightly more relaxed pace.
Despite my background as a social worker, I acknowledge that I am not the type of caregiver who delights in personal care tasks. While I will dutifully perform these duties, I do not find enjoyment in them. I've clearly articulated my own wishes: I do not desire to experience a similar decline. I wouldn't wish this burden upon many. Of course, the ordeal is undoubtedly more challenging for my mother than for me.
A Thousand Tiny Cuts: The Daily Battle Against Cognitive Decline
It feels like a slow, agonizing process, akin to a thousand tiny cuts, or in this context, the erosion of a thousand memories each day.