Taking care of somebody with a chronic health problem is like running a marathon, a long and grueling experience.
"If you give it all your energy upfront, you exhaust yourself," warned Debra Cherry, a clinical psychologist and the assistant director of the Los Angeles Alzheimer's Assn. "You just have to pace yourself."
That is good advice for anyone--whether the caregiver is an adult child with a frail parent, a spouse grappling with the deterioration of her marriage partner, or a parent spending sleepless nights worrying about a child.
It's a burden most of us don't think about, until life slaps us in the face with responsibility.
Almost 12 million Americans need help from someone else with one of the basic activities of daily living--such things as eating, bathing, dressing and using the toilet. Fewer than 2 million of these people are in nursing homes, which means the vast majority are at home, typically being cared for by a family member. The value of this informal care-giving is a staggering $196 billion a year (assuming a price tag of $8 an hour).
Folks needing care come in all age groups, from young children to centenarians. Among those living with the aid of committed caregivers are 6 million people over age 65, another 5.4 million between ages 18 and 64, and 400,000 children under the age of 18.
Advises Cherry: "Don't try to do it all yourself, reach out for help."
Californians are relatively fortunate to live in a state with a wide range of resources. But, as often happens in our fragmented health care system, discovering the sources of help is like going on a tricky treasure hunt. Oftentimes a combination of love, sense of responsibility, pride and embarrassment prevent people from asking for help. So who are the caregivers of older Americans? Here are some statistics:
* Seventy-three percent of those who care for people over age 50 are women.
* More than half (52%) also work outside the home.
* Nearly half are caught in a care-giving squeeze between generations: (41%) have their own children under the age of 18.
"Women see this as a vital role," notes Cherry. "Many cut back hours of work to be caregivers; others give up working."
When the stresses get too great, the caregiver herself can begin to break down physically and mentally. People should seek help in sharing the care burden long before they reach the precipice of disaster.
Caregivers also have a range of needs: They want more information about the disease or medical condition of their loved one. They need support groups where they can talk, laugh, yell and cry alongside people who are going through similar situations. They want help navigating the bureaucracies of health care and the legal process. And they need time off from the sheer burden of care-giving.
These services are available, but people must know where to look.
If you have a family member with a developmental disability, you can get help through California's Regional Centers, funded by the California Department of Developmental Services (DDS). Children and adults with mental retardation, autism, epilepsy and cerebral palsy are eligible. There is also an early-start program with diagnosis and testing for children from infancy to age 3.
There are 21 regional centers in the state that provide counseling, support groups, caregiver training and respite care (giving time off for the caregiver).
There are no income restrictions or tests. All Californians with developmental problems are eligible for the full range of state services.
Information is available from DDS at (916) 654-1897, or on the agency's Web site at http://www.dds.ca.gov.
California also has a first-rate program of care and assistance for adults with chronic brain injuries, caused by such problems as stroke, Alzheimer's disease, Parkinson's disease, AIDS-related dementia and Huntington's disease. Services are offered through a network of 11 regional centers.
"When they discover us, people often say, 'I wish my doctor told me about you,' " said Bonnie Lawrence, spokeswoman for the Family Caregiver Alliance, which runs the program in the San Francisco Bay area and also collects statewide data from the 11 regional sites.
Before they find the center, "people don't know where to turn, they feel all alone," said Edna Sadinsky, family services coordinator for the Los Angeles Caregiver Resource Center, based at USC, with satellite offices in the San Gabriel and Antelope valleys.
Counseling, legal advice and respite care are included. Sometimes, the center may provide financial assistance to caregivers who need a break so they can hire a home care worker. In other cases, the center will contract with a home care agency to send a temporary worker to the house.
"A lot of our services have to do with education and emotional support and long-term care planning," said Lawrence.