REAL LIFE: DEATH, ILLNESS, AND HEALTH INSURANCE
've been thinking about death and dying since I was 38 years old. Till then, I had assumed that such thoughts were not supposed to intrude on one's consciousness until late in life. But during my 38th year, three close friends ranging in age from 40 - 42 died tragically. One had a brain aneurism; the second had a fatal melanoma; and the third died in a traffic accident on a highway in Switzerland when he plowed into a truck without brake lights on his way to giving a free folk music concert at a prison. So dying has been at the forefront of my mind for 30 years.
But not serious illness. Oh, I had a doozy of a time with mononucleosis when I was a freshman in college, but after six months I was pretty much recovered. And as my parents aged, they suffered the humilities of bodies that let down their souls.
Yet, it was not until this past February, when my 90-year-old brother-in-law died, leaving my 75-year-old sister to fend for herself, that I came face to face with illness, mental and physical, in all its ramifications.
My sister must have had a gene that went awry because, even as a small child, she clearly had some severe mental disease. No name was ever attached to it because my father refused to have her treated.
Seven-five-plus years ago, in some folks' eyes, there was a shame attached to mental illness, and there were pitifully few drugs available to alleviate symptoms of such diseases, anyway. So my sister grew up with no boundaries set or restrictions made to her outrageous behavior.
Thinking back (I arrived on the scene when she was seven), her upbringing reminds me of the wild child who was raised in the jungle with no societal sanctions. Interestingly enough, her behavior outside our home could seem almost normal.
And so, when she had graduated from high school and secured a job in a pharmacy, the owner, already in his mid-30's, fell in love with a beautiful young woman. And married her. Soon after, his wife, my sister, insisted on moving as far away from both their families as the country would allow. And for over forty-five years, she made no contact with our family (except when our mother died and she came to the funeral to make sure that she got her share of the estate). It seems, however, that her childhood behavior returned and ruled the household. Not wanting to ever incur his wife's rage, my brother-in-law allowed my sister's behavior to go unchecked.
Then about five years ago, my sister, seven years my senior and five years my brother's, started calling. It seemed that the health of both her and her husband was deteriorating, and she wanted me and my brother to take responsibility for 'making it all better'. But it would take more than 'a spoonful of sugar' to fix it.
And, so, this past February arrived, and my sister was left a widow. Grief was not part of the picture because her mental disease renders her incapable of empathizing or even connecting with another human being. But she was also absolutely incapable of taking care of her affairs -- financial, health or any others. She had never written a check, paid any bills, used an ATM card, or driven a car. The Twentieth Century feminist revolution passed her by.
Then, in May, my sister fell and broke her hip, and she ended up with a debilitating physical infirmity piled on top of her mental condition. Her irrational behavior antagonized the staffs at both the hospital and the rehabilitation center, and after two and a half months, she now resides in an assisted-living facility, where she is trying the patience of the staff there, too. I live in fear of her being ousted from even this place.
I am now her Power of Attorney and the primary responsible person on her Health Care Directive. And so I am receiving a liberal education in dealing with a myriad of financial and health-care agencies and institutions: 4 banks; my brother-in-law's pension agency; Medicare; AARP; the Treasury Department; insurance agencies; and the Veteran's Administration. The latter two are the ONLY two that haven't put obstacles in the way of my managing my sister's affairs.
Fortunately, I manage my family's finances, but when I try to do it for my sister, the banks, etc., won't accept my Power of Attorney. And what should take only a 'phone call, requires entire days of wrangling with officials at every single institution.
And I haven't even mentioned the health care maze I have to deal with. My sister has both Medicare and AARP gap insurance, and a Medicare drug plan (which she did NOT have until I enrolled her in it). But I have been made acutely aware that all of this is woefully inadequate to cover her medical expenses. She has had to pay thousands of dollars for costs denied by Medicare and gaps in the AARP gap insurance and drug plan. I shudder to think what the consequences of these out-of-pocket expenses would be if her husband had not left her adequately provided for. And I wonder what U.S. citizens without these assets do about their health-care costs.
Perhaps the call for universal health insurance should be heeded.
Ellen Baron is a wife, mother and grandmother who has had three distinctive careers:
1) as an editor at an educational laboratory;
2) as a businesswoman who ran a private-label group at Black & Decker, and then served as Director of Marketing for a consumer electronics start-up company; and
3) as an academic administrator who was director of a post-baccalaureate business program.
Her 'Just Jobs' (as opposed to "Careers") included piano teacher and French tutor (her undergraduate degree from Washington University in St. Louis having been in French).
Now retired from both careers and jobs, Ellen serves on the Maryland State Attorney Grievance Commission, as well as the Boards of several non-profits. She has lived in England, Switzerland and Germany, as well as St. Louis, Boston, a suburb of Washington, D.C., and, now, Baltimore, MD.