Lessons from the 14-Month Learning Curve

On July 12, 2012, Dr. James Tucker referred me to Hospice, thereby setting me on an intensive learning curve about services available in New York State for people who are sick and not going to get any better, so let’s look at what I’ve learned in the last fourteen months.

Hospice is for people who are expected to die within the next six months. If the Hospice physician thinks you’ll live longer than that then you are not eligible for services. Your physician cannot order Hospice care for you; he only can do a referral.

Palliative Care

Palliative care is pretty much for people who are severely ill and on the death track but will last longer than six months. Crouse, Upstate and St. Joseph’s hospital’s all have palliative care concepts—St. Joe’s has a four-bed unit, Crouse has palliative care providers who go to patients bedded in other units, and I don’t know what Upstate has. Those three hospitals all have female physicians directing their palliative care and I think that’s significant.

I think male physicians view patients as fix-’em-and-ship-’em, whereas female physicians can hunker down and hang in for the long term. Maybe women are better at accepting death and preparing for it. Palliative care planning is not available in the community and at least one of the palliative care directors is vocal in her certainty that it should be and will be in the foreseeable future.

Other than that, palliative care units exist in skilled nursing homes, where patients may linger for several years. My only experience was on the Iroquois Nursing Home’s Palliative Care Unit, and it was a death house. No one who is cognitively competent should ever be housed there. Whether anyone should ever be housed there is another question.

Our society, through Medicare and Medicaid, is unwilling to spend sufficient money on these souls waiting to be freed of their bodies. We do not want to see or know about their travails as they shed their clay vessels. There should be an enormous amount of service to provide compassionate spiritual care.

Long-Term Care
As far as I can tell, “long-term care” does not refer to anything that is licensed or monitored by any government agency, which means that neither Medicare nor Medicaid will pay for it. It may be a phrase that is used solely by private-pay facilities and insurance salesmen. You would be well advised to go out—immediately—and buy long-term care insurance.

In the old extended family there always was one child who would end up living at home and caring for mom and dad as they aged. That is no longer operational. Grandma, or great-grandma, had seven children; you had two. They live a thousand miles away and will not be quitting their jobs and uprooting their families to come take care of you. Guilt them out and get them to help pay for the insurance. Now.

The law says: “The legislature hereby finds and declares that congregate residential housing with supportive services in a home-like setting, commonly known as assisted living, is an integral part of the continuum of long-term care.”

And the Dept. of Health says: “Long Term Care Ombudsman Program: A statewide program administered by the New York State Office for the Aging. It has local coordinators and certified ombudsmen who help resolve problems of residents in adult care facilities, assisted living residences, and skilled nursing facilities. In many cases, a New York State certified ombudsman is assigned to visit a facility on a weekly basis.” The ombudsmen work for the NYS Dept. of Health and do not do anything you can’t do for yourself.

(To be continued, God willing and the creeks don’t rise.)

About annecwoodlen

I am a tenth generation American, descended from a family that has been working a farm that was deeded to us by William Penn. The country has changed around us but we have held true. I stand in my grandmother’s kitchen, look down the valley to her brother’s farm and see my great-great-great-great-great-grandmother Hannah standing on the porch. She is holding the baby, surrounded by four other children, and saying goodbye to her husband and oldest son who are going off to fight in the Revolutionary War. The war is twenty miles away and her husband will die fighting. We are not the Daughters of the American Revolution; we were its mothers. My father, Milton C. Woodlen, got his doctorate from Temple University in the 1940’s when—in his words—“a doctorate still meant something.” He became an education professor at West Chester State Teachers College, where my mother, Elizabeth Hope Copeland, had graduated. My mother raised four girls and one boy, of which I am the middle child. My parents are deceased and my siblings are estranged. My fiancé, Robert H. Dobrow, was a fighter pilot in the Marine Corps. In 1974, his plane crashed, his parachute did not open, and we buried him in a cemetery on Long Island. I could say a great deal about him, or nothing; there is no middle ground. I have loved other men; Bob was my soul mate. The single greatest determinate of who I am and what my life has been is that I inherited my father’s gene for bipolar disorder, type II. Associated with all bipolar disorders is executive dysfunction, a learning disability that interferes with the ability to sort and organize. Despite an I.Q. of 139, I failed twelve subjects and got expelled from high school and prep school. I attended Syracuse University and Onondaga Community College and got an associate’s degree after twenty-five years. I am nothing if not tenacious. Gifted with intelligence, constrained by disability, and compromised by depression, my employment was limited to entry level jobs. Being female in the 1960’s meant that I did office work—billing at the university library, calling out telegrams at Western Union, and filing papers at a law firm. During one decade, I worked at about a hundred different places as a temporary secretary. I worked for hospitals, banks, manufacturers and others, including the county government. I quit the District Attorney’s Office to manage a gas station; it was more honest work. After Bob’s death, I started taking antidepressants. Following doctor’s orders, I took them every day for twenty-six years. During that time, I attempted%2
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