Dec. 3, 2001 -- Grace Pipkin says she was trained in the Firefighter School of Mothering -- "ready, willing, always there." While her three daughters were young, that philosophy served the family well. But once they were grown, with careers of their own, Grace expected to refocus her energies on something other than parenting.
Then Sophie, 26, the youngest daughter of Grace and her husband, Daniel Pipkin (not their real names), had a medical emergency. A year out of Harvard Law School, working as a litigator on behalf of undocumented aliens, Sophie began suffering from a series of debilitating symptoms. She had memory and concentration trouble, fatigue, and painful joints and muscles -- so much so that she was unable to live on her own.
Almost as disturbing, physicians had little luck diagnosing her problem. One doctor told Sophie to "get a life," convinced that she had only psychological problems. Another told her she probably had chronic fatigue syndrome. A third doctor blamed lupus, an autoimmune disorder.
Whatever the correct diagnosis, the bottom line was that Sophie couldn't work. "Sophie came to stay with us at home. She needed to know we were at hand when she felt her weakest -- that should she awaken in the middle of the night, we were here," her mother says. So for 14 years, Grace and Daniel Pipkin have in many ways assumed their old parenting roles.
(Ultimately, Sophie tested positive for Lyme disease, a tick-borne illness that sometimes leaves people severely debilitated with swelling of the joints, mental fogginess, and other problems. The diagnosis became possible when a definitive blood test for the disease became available. She took tetracycline, often prescribed to treat Lyme disease, for six months, but the antibiotic made her symptoms worse, forcing her to quit.)
Taking Up Old Roles
No one knows how many seniors like the Pipkins care for their adult children -- either due to unexpected life-threatening illnesses or to serious accidents. About 15% of U.S. adults care for a seriously ill adult, according to the Family Caregiver Alliance.
Donna Wagoner, professor of gerontology at Towson University near Baltimore says that 40% of Americans who need long-term care are under 65, based on U.S. Census Bureau data. Some of these are adult children like Sophie Pipkin.
Mother of 13 -- and Still Not Off Duty
Like Grace Pipkin, Annie Snow (not her real name) thought she was done with her parenting duties. Snow had raised 13 children. The first was born in the 1940s, the youngest in the 70s.
Then came the startling diagnosis: Mary Ellen, her eldest child, now 53, had invasive breast cancer and required a modified radical mastectomy of her left breast, including removal of nearby lymph nodes.
Annie moved in with Mary Ellen prior to the mastectomy and ended up staying for three months after a nurse trying to install a catheter to administer chemotherapy inadvertently punctured Mary Ellen's lung. Annie coached Mary Ellen in deep breathing exercises as directed by the doctor and helped in many other ways, large and small.
For each chemotherapy treatment, Annie made the drive from her home in Augusta, Ga., to Atlanta and stayed with Mary Ellen a week at a time. One of her other daughters, Margaret, accompanied her on the majority of these trips. But it was Annie who set the schedule and tone of the day, keeping everybody moving like clockwork, assigning tasks and duties.
Mary Ellen's illness hit Annie hard, and she rearranged her entire life to care for her. Still, she will say little about how much she has contributed. "I'm not cleaning up Mary Ellen's vomit to be a hero," she says.
Dealing With the Stress
Psychotherapist Marianne Hunt, who works with seniors in her Los Angeles practice, says, "It's critical to acknowledge the illness and not to minimize the incredible amount of stress, on a practical and emotional level, for both the parent and the adult child. The parent must also walk a fine line to honor the child's way of coping."
"But don't be afraid to ask for help," she says. "Make sure you get enough support."
When Sophie Pipkin was further wiped out by the six months of tetracycline treatment, she needed meals, laundry, transportation, snacks at odd hours, and help to accomplish even the smallest of tasks. Since, she has slowly regained some of her energy.
Getting on With Life
Grace says that when Sophie was beginning to recover enough to consider the future, it became evident that she would not be able to return to the demanding schedule and long hours of law practice. Instead, she started keeping a journal at Grace's suggestion and began to find the energy to write for a short time in the mornings. A few of her literary essays have won awards, and she is now beginning to work seriously as a writer, as her health allows.
"We talk about writing a lot," Grace, a fiction writer herself, says. "We share ideas and books. Sophie goes to any readings that are during her few hours of energy. Twice, our work has been anthologized in the same volumes, and because she couldn't stretch her energy enough to perform at readings, I read her work.
"There are still those moments without hope -- but never self-pity," says Grace. To cope, Grace writes her fiction and focuses on her three grandchildren. In turn, the grandchildren adore their Aunt Sophie, who creates art projects for them. Grace adds that Sophie has never demanded so much of her attention that she could not find some time for herself.
"There are times when she meets former classmates and their babies, moments when the Harvard alumni magazine arrives and she reads about the professional successes of her classmates -- when she's certain she will never fight her way out of this," Grace says. "We listen, we tell her, yes, she's gotten a lousy deal, and then we try to be upbeat, to make lemonade out of her lemons and then to sweeten it. Sometimes we feel choked by the aftertaste."
The Greatest Gifts
Perhaps the most valuable contribution parents make to adult children like Sophie is to provide optimistic reassurance. "I continue to say that one day she will be well enough to meet men," Grace says. "She's very attractive. I say one day she will meet a man with children who is in search of a loving partner and loving mother for those children. She says I am dreaming."
"But I tell her, 'We need dreams.'"