LOS ANGELES, 17 September 2003 — Louis Buckley wanted only the best for Mary, his frail 90-year-old mom. Yet trying to be a good son put Buckley, a minister and counselor, under gut-churning stress that proved deadly.
“It was hard,” said his widow, Alexandra Joseph, in a phone interview. “It was a nightmare.”
In January, Mary was hospitalized with kidney failure after living for several years in the couple’s home.
Joseph said her husband had been negotiating with a caseworker not to discharge his mother to a nursing home in Corona, Calif. He wanted to find a care facility near his Temecula, Calif., home.
“Mary was an integral part of our lives ... who deserved to have her family nearby so we could see her every day,” Joseph said. Minutes after a phone conversation about his mom’s transfer, Buckley, a previously healthy 66-year-old, had a fatal heart attack. Then his mother died in April.
“This extreme case illustrates what can go wrong and how stressful family caregiving can be,” said Terri Abelar, chief executive officer of the Temecula-based Aging Solutions Inc., which helps families care for the elderly.
A caregiver is any unpaid person who assists a physically and/or mentally incapacitated parent, spouse, friend or neighbor with activities of daily living.
Caregivers also may handle financial and legal affairs, arrange for health care and make medical decisions when the elderly or ailing person cannot, said George Dickerman, an elder-law attorney in Riverside, Calif.
A burgeoning number of baby boomers between 40 and 57, along with people several years older, find themselves “sandwiched” between caring for their children and an aging or ailing parent or relative, according to Work/Family Directions Inc., a Boston-based consulting firm.
Currently, 22.4 million households have elder-care responsibilities. But the figure could reach 39 million by 2007, according to the Family Caregiver Alliance in San Francisco. About 7 of every 10 caregivers are female.
Many adult children don’t think they will be drawn into caregiving with little or no warning. It may begin with a midnight call from an ER nurse. Or your parents call to complain that they’ve just been cheated by a contractor.
“A great majority of people first contact us in the middle of a crisis,” said Carl Rowe, founder of Integrated Care Communities in Moreno Valley, Calif., and a nationally recognized expert in long-term care. “No one wants to admit a parent is dying or needs help.”
But then the children realize, “Oh, my God, this is more than I can handle,” Rowe said. At first, Angie O’Brien of Moreno Valley couldn’t accept that her mother, Elvira DeLaRee, had Alzheimer’s disease.
“She was a very independent person,” said O’Brien, 65. Her mother had lived down the street in a mobile home. “But finally, I realized she needed 24-hour care.”
O’Brien moved the 87-year-old widow into the Alzheimer’s unit at Integrated Care Communities, where she received hospice care until her death last December.
Beyond denial, some caregivers feel a false sense of security, assuming that government or private health insurance “will cover all their parents’ needs,” Abelar said.
Then, suddenly, caregivers may find themselves in a role reversal — being expected to parent their own parents. They may have no clue of how to cope with the complex financial, legal and emotional issues of aging.
Often, caregivers find much joy in their roles as nurturers and advocates. But some have “a very hard time letting go” of all their responsibilities and asking for help, said David Fraser, executive director of the Inland Caregiver Resource Center in San Bernardino, Calif. “They don’t go to doctors. They are so focused on the care recipient, they neglect themselves.”
C. Van Tune, a TV and radio host and producer, remembers that the strain of finding an assisted-living residence for his 82-year-old father began affecting his sleep and concentration.
“Here I am, a high-stress TV producer from Hollywood. I could handle business stress but not family stress that well,” said Tune, a Temecula resident. “Getting one call from ... a nursing home can upset your day. But you have to handle it.”