More. Good. Days™ – Honoring and Supporting Individuals with Dementia
by Fatima Sakarya
While the City of Charleston wears its history proudly with its stunning architecture and documented lineage, much of the past of the Lowcountry is an unspoken one, embedded in its soil and often unknowable. Nearly all of the plantation homes that marked the island have disappeared, and even though the descendants of planters and their enslaved laborers still populate the island, like the magnificent but silent Angel Oak, one needs to actively conjure up the past in one’s imagination or engage in probing research before you can gain any sense of the events that have left their imprint in the land. Human beings are no different.
An oak that others leaned on
Emily Elizabeth Smalls was born on James Island over 75 years ago and delivered at home by her midwife grandmother, Mary Roper who was known by all as “Miss Feedie” because she would generously distribute bread and baked goods around to families. Emily’s family of six girls was split, early on, when her mother Janie, a hair dresser, decided like millions of others who participated in the ‘great migration’ to the North, that life in the Big Apple offered a brighter future than the indignities and hardship of Jim Crow South. For Emily however, the fast pace and tall buildings of New York City held no charm and could not replace the warmth, familiarity, and freedom of her childhood in the Lowcountry. So as soon as the opportunity arose, she returned back, to be raised on James Island alone by Miss Feedie while the rest of her family remained in New York.
Emily grew into adulthood accustomed to working the land for the food you ate, surrounded by the embrace of a large extended family and the churchgoers of St. James Presbyterian Church. By age 19, she had married Nathanial Smalls, a brickmason, and together they made a life for themselves on James Island, raising two children in the Westchester subdivision.
She never stopped working outside her home, a reflection of both the opportunities that were available to her, and the work ethic she modeled from her upbringing. She was employed her entire adult life, first in the Cigar Factory in Charleston, later at MUSC, and even later at the James Island Charter High School cafeteria, working well into her 70s. Her daughter Cynthia, a trained nurse and health care professional, describes her mother as the one everyone turned to for advice and help, not unlike her great grandmother; a family matriarch who was strong in spirit and character, an ‘oak’ that others leaned into and depended on throughout their own lives whenever they needed advice or help. The home in Westchester was a hub which hosted a stream of cousins, nieces, nephews, and grandchildren who all knew they were welcome there.
A traumatic event
When Nathanial Smalls, Emily’s husband, passed away suddenly in 2014, the subsequent changes in Emily’s behavior were easily attributable to the grieving process. Depression is an expected outcome when a 52-year marriage ends so suddenly. What was not natural however, at least to Cynthia, was the sense of confusion she observed in her mother afterwards and the way she seemed to have difficulty retrieving certain words while speaking, organizing her daily life and remembering simple things. Cynthia’s professional training helped her see, what others in the family were missing: that her mother’s behavior was more than just depression.
She arranged for her mother to get a neurological consultation which resulted in a diagnosis that is hard for anyone to hear: dementia, probably Alzheimer’s disease. What Cynthia knows is that, as hard as that diagnosis is to accept, it can be a relief to finally have a name for what is happening which is often confusing and even frightening. It does nothing to change the reality of the cognitive losses in the individual’s life, but it can be the first step in making significant and necessary life decisions, which the family did.
A support network
Today, Emily Elizabeth Smalls, a daughter of the South, a woman who can trace her lineage back in James Island for several generations, who is an elder parishioner of her church, and who chose to live here instead of the bright lights of a big city in the North, lives with her daughter Cynthia and grandson Michael in the same home she bought with her husband over 45 years ago. She is cared for by a support network that is anchored by her daughter but strengthened by family, friends, home care givers and Respite Care Charleston (RCC), a local nonprofit organization that was specifically formed to help families who are caring for loved ones with dementia and whose mission is to create “more good days” for those families.
RCC was formed in in 1996 when St. Matthews Lutheran Church saw how much caregivers of family members with dementia desperately needed support. There is mounting evidence of both the monetary cost and the physical and emotional impact of caring for someone with dementia. The effect it can have on a family is profound; someone, often a spouse or child, steps forward as the main caregiver, changing their life around to adjust to the new demands brought about by their loved one’s care needs. This is turn can trigger stress within the family if there is conflict over the burden of care.
Dementia care is fueled by love
Even a small change in the care program, allowing the main caregiver regular and dependable time away to recharge and meet their own needs, can prevent ‘burnout’ and allow the individual with dementia to remain at home. Dementia care at home is fueled, first and foremost by love. Nothing can replace the familiarity and dedication that family brings, but in recognition of the limits of one person’s energy, patience and time, Respite Care Charleston provides regular local day programs of several hours a session, giving caregivers a much-needed break each week.
The programs, which are available in six different locations throughout Charleston county, are designed to engage dementia sufferers in a bright, friendly environment where their weaknesses in speech and memory are overlooked in place of activities where they can participate with others and find joy: creating art, playing or listening to music, dancing and physical exercise, baking cookies, or petting a therapy animal. The socialization provided by the program reduces the isolation and loneliness that is so regrettably common for both caregivers and those with dementia when friends and family often fall away over the years, unable to understand how to engage with their former friend, grandfather, aunt, etc. RCC staff have the professional training to understand the behaviors and needs of those with dementia. The program is non-denominational, affordable and available, regardless of ability to pay.
Cynthia says the program has been a truly positive experience for both her and her mother, who took to the program immediately and who now has many friends and staff who greet her presence there with joy. In 2017, when the Charleston River Dogs offered to let one of the RCC participants throw out the first pitch of a game, it was Emily who stepped up to that honor, showing the world that dementia can be a journey into a different stage of life that retains its own beauty and joy.
Fatima Sakarya is an attorney (licensed in New Jersey) who works in the field of real estate law and is employed in the legal department of Healthcare Trust of America in downtown Charleston. After living a peripatetic life for the past decade or so, she happily now considers James Island home where she lives with her husband Ron and two beloved corgis, Ellie and Guinness. Fatima serves on the board of Respite Care Charleston. She lost her father, the late Dr. Ismet Sakarya, to dementia in 2012.
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