Some clans support an ill family member by rallying
together and splitting duties.
Saturday, November 30, 2002
By Pamela Stone — Special Contributor
Joan McMann remembers awakening in the middle of the night to her
16-month-old daughter's frightened cry. By the time she reached
her, the child was almost unconscious. It was the beginning of a
series of epileptic seizures that caused brain damage and a neurological
Today, through surgery and medication, Jodi’s seizures have been minimized. She works and lives independently. By Jodi, now 39, is developmentally disabled and still depends on her family for care.
Joan McMann, 69, is not alone. In 1998, a national survey of families and households by the U.S. Department of Health and Human Services in Washington, D.C., reported that 52 million Americans are caregivers for someone age 20 or older who is ill or disabled. As our population ages, that figure is expected to increase.
And as more families face caring for loved ones, they learn the value of a team approach.
“"The key is open communication,"” says Kathy
Kelly, executive director of The Family Caregiver Alliance, a nonprofit
advocacy and consulting group in San Francisco. “"If
families come together and are willing to change roles and make
accommodations in their lives, they can become resilient caretakers."”
The McMann family is one example. In 2000, the Dallas family established
a trust and guardianship, allowing a family member to make decisions
regarding Jodi's future.
“"If something happens to my husband or me,"”
explains Ms. McMann, “"I don't want to leave Jodi dangling."”
Periodically, the family meets to discuss Jodi's future. Over a
glass of wine one evening, the older sisters, Erin Fincher, 42,
and Lynn Schoenthal, 46, agree, agreed to begin to take charge of
Jodi's care. Erin balances Jodi's checkbook, managing her sister's
finances. Lynn handles Jodi's medical needs, taking her to frequent
doctor appointments, where she meets with the medical staff and
discusses Jodi's progress. She also takes Jodi to the grocery store.
To make this transition easier, Ms. McMann shares Jodi's medical
journal with her daughters. The journal lists surgeries, medications
(More information and the remainder of this article can be obtained by contacting Pamela Stone at firstname.lastname@example.org).