Family Values

Negotiating your personal worth as a caregiver

Back Article Sep 1, 2012 By Karen Everett Watson

When Shelley Tabar’s father fell off her roof, she became his primary caregiver and subsequently lost nearly half her income.

The West Sacramento resident is a classic example of the 25 percent of adults in the U.S. who juggle life while caring for an aging parent. The financial cost to these caregivers is estimated at a cumulative $3 trillion in lost wages, pension funds and Social Security benefits, the MetLife Mature Market Institute reports. But with early planning, these and other losses can be mitigated.

Tabar’s 85-year-old father fell off the roof picking oranges and broke his arm, shoulder and foot, requiring constant care for six months. It was a full two years before he recovered completely.

“By being my father’s primary caregiver, I got a whole different perspective,” says Tabar, an expert in the field of aging. She has more than 25 years of experience in health care management and owns Family Care Expert, a Sacramento geriatric care management firm. “My parents had no idea what I did for a living. They thought I should be able to drop everything anytime they needed me.”

One in four of all adult Americans provide care for an aging parent, and nearly all experience lost hours on the job, lost pay and/or decreased job security, MetLife says.

“It’s best if a primary caregiver is compensated, if the family can afford it,” Tabar says. “It’s their time taken away from family and work. It makes sense for them to be compensated, and they can be more focused to do a better job caring for their parent.”

The toll of caregiving goes beyond the financial burden.

“It’s emotionally and physically draining,” Tabar says. “I had to use all my education and my skills to deal with it.”

Tabar exercised regularly to reduce the stress, and she also attended counseling regularly while caring for her father, who died in April. She said many primary caregivers over age 50 are known to experience more health problems than their non-care-providing counterparts.

Dealing with family and money can put a strain on relationships, too, says Cecilia Tsang, an attorney at FamilyWealth Law Group of Sacramento. “The biggest conflicts happen when we don’t have the opportunity to sit down with the elder,” Tsang says. “The most important issue to me is, ‘What does the elder want?’ Once they lose their ability to make decisions, everything becomes more difficult. It’s critical to address these issues before the elder loses capacity.”

Having a medical directive, a financial power of attorney and a family trust is essential to good planning, according to Tsang. “Without the right documents in place, the case often winds up in court,” she says. “A conservatorship has to be established, and that’s when the family disputes come in. We have to prove the elder is no longer able to take care of themself and make their own decisions. Family members often fight for control; the elder fights it — after all, we’re taking their freedoms away. Conservatorships are the most likely cases to be contested.”

More conflict can be expected when a family caregiver asks for financial compensation, and according to Tsang, “That’s when it really gets messy.

“Other family members often think the care should be given just out of love,” she says. “Then there are formal procedures before a caregiver can be compensated. There must be documentation … something physical that we can analyze. Someone has to have formal power to take care of finances. These are issues that could have been avoided had there been proper planning.”

Tsang says the rate of compensation must comply with hourly industry standards.

Parents of a woman named Danielle failed to have any legal planning in place before her father died. “My brother moved in with them,” says Danielle, who wishes to remain anonymous because of ongoing family conflicts. “While my dad was alive, he was able to handle the situation.”

But it wasn’t long after her father’s passing that the circumstances became critical.

“I love my brother,” she says. “But he was taking my mother’s prescriptions and took control over her money. The bills didn’t get paid, and he was using drugs. Mom just wouldn’t do anything about it.”

Nine months after her father’s death, Danielle’s mother, who lives a few hours away, faced a health crisis and a long hospitalization.

“Mom called before she was expected to be released. She said she was afraid to go home and wanted to stay with me,” Danielle says. “I’m a single mom raising five kids in an apartment. She would have had to sleep on the couch.”

But all of her mother’s assets are tied up in her Fresno-area home; she needs those assets but refuses to take action against her son.

“It’s best if a primary caregiver is compensated, if the family can afford it. It’s their time taken away from family and work. It makes sense for them to be compensated, and they can be more focused to do a better job caring for their parent.

Shelley Tabar, owner, Family Care Expert

Getting the necessary care for her mother was nearly impossible for Danielle. A friend was able to place her mother in an assisted-living facility that was willing to wait to be compensated.

“If she had been willing to sell the house, we may have been able to purchase something jointly,” Danielle says. “She may have been able to pay me to provide some care for her, which would have allowed me to work a little less and have more quality time with her.”

Nancy Milton, a counselor at Progress Mediation in Elk Grove, says many family caregivers need financial help; others simply feel entitled.

“They think they’re doing so much for Mom or Dad that they should be compensated,” she says.

Milton says mediation can often be the answer to problems that arise between family members. “The biggest issues concerning elder care are money, control, independence and cultural issues,” she says.

Milton’s mediation partner, Deborah Brusco of Mediation for Elders, says getting past the “blame mode” is crucial for reaching agreement.

“If we can get the parties to hear each other, really listen, that’s when we make progress,” Brusco says. “We provide a safe place for them to talk. All conversations that take place in mediation are confidential. The courts have upheld that.”

Staying out of court is more effective and less costly, Milton says. “Studies have shown that mediation agreements are more likely to be followed than court orders,” she says. “All parties are part of the process. They’re more invested in the agreements.”

If the elderly senior is able and willing, they’re involved with the mediation, too, Milton says.

“If they have cognitive issues, we’ll invite their lawyer to be present, so they are represented,” she says. “These are difficult conversations. What we first hear from the family is usually the tip of the iceberg. The elderly parent is often afraid to tell their children what they want. We try to address the smaller issues first. Once even a small agreement is reached, it makes it easier to move on to the harder issues.”

Milton says families should get their agreements in writing. “We also let them know what legal documents their parents need to insure proper care,” says Milton, who also is an attorney.

If issues persist between family members, it’s often devastating to all involved.

“The really sad part is these conflicts often end up in explosions,” Milton says. “These family members may never see one another again. Mediation can often prevent permanent rifts and preserve family relationships.”

Tabar’s mother needed round-the-clock care after her husband’s death and now resides in a small board-and-care community, enabling Tabar to visit often and monitor her care.

She says she’s glad she could be there for her parents, despite the financial considerations.

“I could have been compensated,” she says. “I chose not to be. I was compensated by the bond and intimate relationship that developed between my dad and me. It was a learning experience.”

Type of Care Available

ACUTE CARE: Acute-care facilities provide medical and surgical care and/or intensive rehabilitation treatment. Fees for service may be covered by Medicare, Medi-Cal, private pay or another form of health insurance.

ADULT DAY CARE: These centers are community-based programs that provide nonmedical care to anyone over the age of 18 who needs supervision or assistance with the activities of daily living (eating, dressing, toileting, etc.) on a less-than-24-hour basis. These programs also provide activities and opportunities for social interaction. No transportation or nursing assistance is available. Private pay only; $75 average for a full day of care and an average of $50 for a half-day.

ADULT DAY HEALTH CARE: Licensed, community-based care programs that provide a variety of health, therapeutic and social services designed to serve the specialized needs of people at risk of being placed in a nursing facility. Adult day health care centers have multidisciplinary teams of health professionals providing individualized care plans that can include physical therapy, occupational therapy, speech therapy, social services, recreation, psychological services, transportation, meals and nutritional counseling. Fees can be covered by Medi-Cal if the client has an approved diagnosis; long-term insurance or private pay at an average rate of $75 for a full day of care or $50 for a half-day.

ASSISTED LIVING: Also called board and care, residential care or group living, assisted-living facilities provide 24-hour personal care and supervision, including meals, assistance with bathing and some activities of daily living. Housekeeping services, monitoring of medications, social activities, support services and assistance in making health care appointments are also offered. Some facilities also offer memory care. Predominantly private pay, some facilities will accept Supplemental Security Income if the client’s income is less than $981 a month. Based on the level of care, costs can range from $3,000 to $5,000 a month.

HOME CARE: Provided by home health aids or nurses, basic home care is nonmedical assistance with basic daily activities like getting in and out of bed, dressing, bathing, eating and using the bathroom. Help with light housekeeping, laundry, shopping and cooking for the client is also typical. Average cost of $20 an hour payable through long-term care insurance or private pay.

HOME HEALTH CARE: Offers a wide range of health care services administered in your home by health aides. Skilled home health services can include physical therapy, wound care, injections, intravenous therapy and monitoring of illnesses. On physicians order, these services can be covered by workers’ compensation, HMO, Medicare or private pay.

HOSPICE: A program that provides palliative and supportive care for the terminally ill. An interdisciplinary team of professionals and volunteers provide coordinated services with a focus on pain management and quality-of-life in the home or institutional setting. Support is provided for both the patient and family members, including follow-up counseling for family members after the loved one’s death. Provided by Medicare, clients disenroll from their HMOs and enroll in hospice.

IN-HOME SUPPORTIVE SERVICES: Housecleaning, meal preparation, laundry, grocery shopping, personal care services (such as bathing, grooming and paramedical services), accompaniment to medical appointments and protective supervision for the mentally impaired. Provided by the county, the client’s cost share is based on monthly income and Medi-Cal participation.

INTERMEDIATE CARE: These facilities provide intermittent nursing care and 24-hour supportive care, including adherence to medication regimes, special diets, personal hygiene and some tasks associated with daily living. Few and far between, intermediate care is a private pay or SSI participant-only program.

MEMORY CARE: Sometimes used to refer specifically to dementia care, Alzheimer’s care or both, memory care provides intensive supervision and is often the best option for seniors with profound memory loss. Ranging from $4,000 to $7,000 a month, this level of care is private pay only.

RESPITE CARE: Short-term care that allows a caregiver free time from caregiving responsibilities. A higher daily rate than day care, the average expense is $175, private pay only.

SKILLED NURSING: Often referred to as a nursing home or convalescent home, skilled nursing centers provide 24-hour nursing care and general medical management. Nursing, rehabilitation services, social services and activities are available, and sometimes family education and support services are offered as well. Care is provided under the direction of the resident’s physician and payable through Medicare, HMO, private pay, Medi-cal or long-term care insurance.

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