My wife and I just returned from a pilgrimage to the Holy Land of Israel. While there, one of the group of forty-two we joined for a bus tour, asked: “So what does this trip have to do with Elder Care and Elder Law?” Partly because I was hoping to escape thinking about long-term care needs while vacationing 5,800 miles away from home, I answered “I don’t know. Does it need to?”
Long term care issues transcend borders and cultures. How families, cultures and governments respond to care needs of older adults varies. At least for me, there’s no getting away from feeling the importance of the issue.
A supervisory nurse from a Michigan long-term care facility was relaxing after a tiring day of site-seeing and looked out from the 15th floor of our Jerusalem hotel to observe the neighborhood below. She observed one older person, then another, being assisted by a younger person to take a brief walk on a nearby rooftop, presumably for fresh air and exercise. She suspected that the aides were staff of a care facility, perhaps like the one she works at in Michigan. We chatted for a while, comparing our experiences in Pennsylvania and Michigan, only briefly speculating about how long-term care protocol might differ more in Israel.
Married baby boomers from Texas were enjoying a sense of freedom that had not been possible when they were full-time caregivers of the husband’s mother, who lived with them and suffered from Alzheimer’s disease until her recent death. The wife is a hospital nurse and managed to schedule her shifts to be home when her husband could not be. Their adult son scheduled his work so that he could stay with his grandmother every Wednesday. The Texans admitted that constant home-based caregiving was a grind they did not miss.
The wife recalled that, as the Alzheimer’s disease progressed, her mother-in-law developed an appetite for fast food, and particularly tacos. Fortunately, a round-trip could be made to a nearby Taco Bell in five minutes, which was about as long as it felt safe to leave her mother-in-law alone. The mother-in-law was in the habit of calling out “taco, taco” every time the front door bell rang, which provided an oddly comical relief, and in hindsight perhaps could be explained because the family at one time shared their home with a chihuahua who was similar to the star of Taco Bell’s TV commercials.
Alzheimer’s caregivers must have a sense of humor. It helps to know that, if conditions become impossible to manage at home, at least in the United States there presently are care options available outside the home which can be paid for by Medicaid if funds are otherwise exhausted. But these options do not exist in all cultures.
Our guide in Bethlehem noted that the day of our tour was the Palestinians’ Mother’s Day. This fact became a springboard for him to explain the importance of close family ties in the Palestinian culture, where there are no public pensions or government programs to care for older persons, such as Americans have with Social Security, Medicare and Medicaid. Palestinians work as long as they can before relying on their children for a means of ongoing financial support and care.
A wide spectrum of long-term caregiving options is illustrated by the three vignettes of the experience and observations of the nurse from Michigan, the Texans’ care of their mother with Alzheimer’s in their home, and the apparent lack of options for most families in Palestine. During the thirty-one hours it took to return from the last tourist attraction in Jerusalem to Cumberland County, my idle mind reflected.
What can be done to improve the American long-term care system to make it efficient and sustainable? Should the options in Pennsylvania vary from those in Michigan and Texas? If care options differ from state-to-state, should families be permitted to relocate their frail older members to a different state in order to maximize the amount of government assistance available for them? Should families, such as the Texans, be rewarded with tax incentives for their caregiving, or should their heartfelt memories be adequate compensation?
The reality of present public policy is that families which chose the least restrictive environment, such as home care or a licensed personal care home, have less potential to receive financial help from the government than if their loved one is placed in a skilled nursing facility. Since licensed nursing facilities are not adequately compensated by Pennsylvania’s Department of Public Welfare for the care they provide to the indigent, they must increase their fees to those who pay privately. This motivates families to accelerate their loved one’s depletion of funds so they can qualify for governmental financial assistance.
The distinction between a Pennsylvanian being qualified to receive care in a licensed skilled nursing facility instead of a licensed personal care home is blurred. This is especially true for a patient with Alzheimer’s disease. Pennsylvania has failed to provide any incentives to encourage facilities to become licensed as an “assisted living residence,” which could address the gray area between licensed personal and skilled care options.
Our long-term care system is illogical and dysfunctional, at least from an economic point of view. Why is it that the United States Congress has provided no leadership or vision for long-term care in America? Congress did increase the federal estate tax exemption from $600,000 per individual in 1997 to $5,340,000 in 2014. That windfall was granted to heirs without any apparent consideration as to whether they assisted with the long-term care of their benefactors.
I don’t claim to have all of the answers. But, without any doubt, I know that the long-term care system in Pennsylvania, and probably across America, is not economically sustainable without change. Could it be that the 1% of the elite rich of America, which include most members of Congress, has little personal understanding of the long-term care issues which challenge most middle class American families?
by Dave Nesbit, Attorney