Knocking on Heaven's Door

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By Katie Butler

Butler and Her Parents

This is an honest, sobering look at what awaits so many elderly people and their caregivers, who are often family members.  It is also the story of a Medical-Industrial Complex gone wild:  doing things to people for economic gain.  Expensive procedures that have serious unintended consequences are, unfortunately, the rule.  For a variety of reasons, many physicians perform lucrative tests and interventions that do little to improve patients’ well-being.  Death is seen as the ultimate enemy, yet we all will die.  How one dies is important, yet this is not considered often enough.

Knocking on Heaven’s Door is the story of a singular family.  All families are unique.  The narrative is memorable, but there is much more.  Butler discusses American medicine and its domination of patients and families, and suggests ways we as patients and family members can try to protect ourselves.  It is also a wake-up call for physicians to try to change our behaviors from running profit centers to being caregivers in the true sense of the word.
These notes may help some of you who are too busy to read the entire book, however, should you do so, you will find much more to interest you.  I learned a lot by a fairly careful reading of Katy Butler’s book, much that will help me as a son, a caregiver and a physician.

A Bittersweet Season (2011)

by Jane Gross

As painful as the role reversal between parent and child may be for you, assume it is worse for your mother or father, so take care not to demean or humiliate them.
Avoid hospitals and emergency rooms, as well as multiple relocations from home to assisted living facility to nursing home, since all can cause dramatic declines in physical and cognitive well-being among the aged.
Do not accept the canard that no decent child sends a parent to a nursing home. Good nursing home care, which supports the entire family, can be vastly superior to the pretty trappings but thin staffing of assisted living or the solitude of being at home, even with round-the-clock help.

Important Facts
Every state has its own laws, eligibility standards, and licensing requirements for financial, legal, residential, and other matters that affect the elderly, including qualification for Medicare. Assume anything you understand in the state where your parents once lived no longer applies if they move.
Many doctors will not accept new Medicare patients, nor are they legally required to do so, especially significant if a parent is moving a long distance to be near family in old age.
An adult child with power of attorney can use a parent’s money for legitimate expenses and thus hasten the spend-down to Medicaid eligibility. In other words, you are doing your parent no favor—assuming he or she is likely to exhaust personal financial resources—by paying rent, stocking the refrigerator, buying clothes, or taking him or her to the hairdresser or barber.

This is an important book if you have aging parents. It also will be a valuable read for cognizant elderly persons.

A Life Beyond Reason

Chris Gabbard, an associate professor of English at the University of North Florida, has published an essay on the evolution of his perspectives regarding his severely handicapped son, August. Professor Gabbard has much to teach us about the depth of parental commitment and how caring for a special needs child can enhance the outlook of the caretaker as well.

Gabbard writes: “To admit how August has changed me is not to assert that what he has given me compensates for what he, my wife, my daughter, and I have lost on account of the poor decisions made by the hospital where he was born. There is no getting back what we have lost. Compensation is just a trope, and belief in compensation is as superstitious as belief in the medieval notion of correspondences. Besides, nothing can compensate for what all of us have had to give up.

“That is not to deny that August, along with my daughter and my wife, is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being.”

Professor Gabbard’s essay can be accessed in its entirety here. It will also appear in Papa, PhD: Essays on Fatherhood by Men in the Academy, published this month by Rutgers University Press.

An Uncertain Inheritance (2007)

Writers On Caring for Family
by Nell Casey
From Publishers Weekly: Casey, a mental health journalist and editor (Unholy Ghost: Writers on Depression) has collected a remarkable array of mostly original essays by talented writers on being cared for themselves and caring for parents, children and spouses with illnesses as varied as depression and brain injuries. The writers have faced age-old dilemmas: for instance, novelist Julia Glass grapples with her own mortality and tries to raise two young children while undergoing chemotherapy for breast cancer. Other essays venture into more modern problems: Julia Alvarez and Anne Landsman both struggle to help parents who live in other countries. Many of the essays are beautiful and all are moving, but they are also relentless. The tales of cancer, multiple sclerosis and Alzheimer's start to blur together, no matter how artfully told. Sam Lipsyte's irreverent portrayal of caring for his mother as she died of breast cancer shortly after he kicked drug addiction provides welcome relief. He describes injecting his mother's medication: I tended to make a grand, nearly cinematic deal of flicking the bubbles away, as though to say, 'Now Mom, aren't you glad I was a junkie?' Other essays are less developed, and Andrew Solomon rehashes territory he covered in The Noonday Demon. Overall, the essays are well worth reading—just not all at once. (Nov. 13) Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.