Caregivers could use some help

RALEIGH -- A recent report called "Caregiving in America" tells us that 12 million people in this country need long-term care. Mercifully, 21 percent of American adults give of themselves to provide free caregiving for loved ones.

As these figures suggest, there is a fundamental realignment going on in our culture as Baby Boomers deal with the day-to-day life-management problems of their parents.

The "Me Generation" and Gen X-ers, who were popularly viewed as myopic self-satisfiers, have assumed responsibilities to their parents in a caring, compassionate and loving manner. Such a responsibility is consequential to the caregiver's personal and professional life, but this care is filling a void that has developed as medical science extends longevity but society fails to address the realities of elders' quality of life.

Thousands of North Carolinians spend every weekend at a parent's home, giving care. They are consumed with trying to make private elder care the best it can be, and pay thousands of out-of-pocket dollars for aides, so that they can hold down a job.

These private caregivers are satisfying a critical health care and community need but they are laboring alone. Most ask for nothing, because they know they can get nothing.

A support group is of no value if you can't leave your house to attend.

Medicare prescription drug coverage is no help when the "doughnut hole" of coverage and a monthly insurance premium makes no real difference to a chronically ill patient whose drugs don't appear on but a few companies' coverage lists.

It is no help when drug companies suspend patient assistance programs because they are now served by a dysfunctional prescription drug program.

It is insulting to caregivers to hear radio and television ads from firms that offer to provide services to divert elder's financial assets so that they can be easily admitted to Medicaid-funded institutions.

Anemic regulation of care facilities gives families no comfort if they are forced to admit a loved one for rehabilitation or skilled nursing care, and cuts in Medicare have effectively removed the hope of medically prescribed minimal in-home aide service.

North Carolina's NCRx program to offer $18 per month of assistance for prescription drug premiums is warmly welcomed and greatly appreciated, but is designed only for low-income patients. An elder cannot qualify if his or her household income is more than $17,150 per year, while private-pay in-home nursing care in North Carolina averages $55,000 a year.

As a society we must recognize that a failure to give meaningful assistance to middle-class families is only going to create more low-income patients.

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What must happen to address this crisis of out-of-control health care costs and a lack of support services?

On the federal level, the prescription drug plan must be re-engineered to remove the "doughnut hole."

The Medicare system must be revamped so it is designed not to help a patient die, but to live in dignity.

Federal tax laws must be amended to recognize the valid medical deductions of family members who privately pay for services that otherwise would become public liabilities.

Medicaid administration must be tightened so that solvent families cannot gerrymander their finances to unfairly qualify for the program.

The state must provide meaningful regulation of facilities for elder care to create confidence in the families that must entrust loved ones to their care. The state must also continue its focus on education of professionals dedicated to geriatric nursing and nursing assistance through high schools, community colleges and universities.

Local agencies must understand that families who are consumed with the daily challenge of learning how to turn frail parents in bed, bathe them safely and cope with the heartbreak of sometimes violent dementia have needs that transcend meal sites and centers that cater to ambulatory, vital seniors

It's been estimated that the value of free services given by caregivers totals $306 billion a year. These services are provided by family members without regard to cost because of love and respect for their elders. If as a society we applaud family values, we have to accept that the nuclear family of 2007 includes not only parents and children. It includes parents of parents; elderly family members with rights to a quality of life that befits their immeasurable contributions to our world.

(David L. Clegg is an attorney who lives in Raleigh.)