My Great-Grandmother's No Burden

Recently, I was invited to teach a class at George Mason University's masters in public administration program. The regular faculty member is Frank Shafroth, my good neighbor and chief of staff of our Congressman Moran (D-Va.).

Frank represents the best of public service. A distinguished career in the Peace Corps, House of Representatives, U.S. Senate, National Governors Association and county government. Frank is a lawyer by training and a teacher-gardener by constitution.

Frank is intrigued by AAHSA's Long-term Care Solution, so he invited me to teach his class one evening and share the framework with his students. There were 11 students, ages 20-something to 60-something. Mixed backgrounds, employed in a variety of businesses from government intelligence to the funeral industry.

I asked the class how many had experiences in their lives as caregivers. Seven of eleven hands went up. I asked who would mind sharing their situation. One young woman had experience early in life as a kid. An older Caucasian man had been a long-distance caregiver for his mother. An African-American woman said her family tradition is that the caregiving falls to her because her mother says that caregiving is a daughter's responsibility (her two brothers agree). There were multiple ethnic backgrounds represented in this small class - and there seemed to be ethnic traditions that differ quite a bit when it comes to expectations about caregiving.

One woman's story caught my attention. She is 32, a newlywed of three months. She and her husband agreed to move her 97-year-old great-grandmother into their two-bedroom townhouse. They love her a lot. She and new hubby became the caregivers because the grandparents can no longer do the job due to health problems of their own. Her mother and aunt now have responsibility for grandparents and great aunt. I asked her about the "burdens" of caregiving. "My great-grandmother isn't a burden. It's just what you do as a family," she said. "Finding the community resources to help us see about her during the day while my husband and I work is the real burden." She's also worried about her parents, so she pays for long-term care insurance for them.

Several in the group could identify with the maze of what I call "yellow pages" assistance with confusing options and no guidance to help make good choices. Several could identify with the hospital discharge crisis of not knowing where to turn when an older person has their Medicare coverage terminated. Getting help in another state with programs that differ from state to state is a common theme. No one to help make choices, make decisions and pursue options. Transferring assets, what's covered by Medicare or Medicaid or long term care insurance - a mish-mash of financial issues.

Recently, a former member of Congress was referred to me by a Congressional staff member. Her mother almost died a few months back from an infection. The mother suffers from a neurological disease, may also be depressed, can't go home but may not need the nursing home she's in and she's bounced around the acute and long-term care system in a large city.

I asked the former Congresswoman if her mother had received a comprehensive geriatric assessment. "No," she said, "I didn't know a comprehensive assessment was even an option." So, we offered to help her set that up. The Congresswoman loves her parents very much. She just doesn't know what to do.

The class at George Mason and the former Congresswoman are among 34 million families today that need our help beyond the boundaries of our traditional services. And policy leaders offer few answers. One state seems to believe heavy fines for nursing homes should be a priority in long-term care. Others believe almost everybody can be cared for at home, so let's close down the nursing homes. Still others are slow to support home-and community-based services because people will come out of the woodwork to take advantage of government programs. Many believe we can regulate good care and services. Others believe the marketplace will sort all of this out, whatever that means. Some think tax breaks are the financial answer while others believe a universal plan is in order. Others even say that long-term care is such an overwhelming issue that we can't address it politically.

It is my belief that few policy makers really know what they are talking about because they don't connect their own families' caregiving experiences with an opportunity to change policies or a chance to win voters' hearts. I heard of one member of Congress with a "graying" district who wants to avoid the aging agenda because of appearances to his constituents. Perhaps he's denying his own aging.

I'd like to ask each and every one of you to convene a community forum that helps people understand and access community resources and brings to light why we must demand that policy makers create a better system that empowers consumers instead of burdening them. We can help you structure the forum and ask the right questions.

Real people are willing to take responsibility for their elders, but they often find the current system a nightmare to navigate. Even people who make laws don't know the options. Let's get the really good public servants like Frank Shafroth to help create the policy story that addresses the critical policy problems that make it difficult to care.

If AAHSA members don't help families make connections and don't help policy makers make connections to get the help they need, and if we don't help policy makers create policy and programs based on the needs of real people, then who will?

Caring for our loved ones and friends is our personal responsibility. Making it not a burden is ours. Hopefully, we will all live long enough to be somebody's great-grandparent, and hopefully, a great-grandchild is there to care. Let's make it easier.


William L. Minnix, Jr.
AAHSA President & CEO


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