Wednesday October 3, 2012

One of the most profound and unhappy transformations of a social institution has been that of the family. There was a time when generations lived together in one house or lived close enough to be of constant support.

Daughters learned some of the art of midwifery and they became experts at raising younger siblings, learning skills that would set them in good stead for the rest of their lives. They learned how to be household managers and how to tend to the competing interests of a variety of family members

Sons learned the skills of maintaining and repairing a house, providing fuel for winter heat and raising some of the food that the family would need to lead a healthy life.

But that was many years ago and the family is nothing more than a vague concept to too many people. Sure, many of us feel connection and degrees of love for those close to us, but we rarely work together in an earthy survival mode to make sure that the family stays healthy, warm and prosperous.

Instead, we run around doing things that are supposed to make our lives easier when, in fact, too many of us never seem to have time for the simple things that would really make our lives better. We are caught up making money in the service of the perverse 21st century concepts of prosperity and health.

This is all by way of introduction to the way that end of life care has changed. It is one of the saddest evolutions of modern society. In the extended household of many years ago three or four generations might have lived in the same household. As grandma or grandpa got older and less able to be productive, other members of the family would take over.

Sure, the oldest generation would still start to feel useless as their bodies betrayed them and they could no longer cut wood or clean the floors, but they knew that their family would make sure they were taken care of as they approached the end of their life.

The oldest generation could have the chance to sit back and impart some of their learned wisdom to the youngest generation. They could see usefulness in molding character and in instilling values.

As the oldest generation moved closer to death they knew that they would be cared for in their own bed, in their own home and that they would be able to die surrounded by their family. After death they would be laid out in the parlor so that family and friends could say goodbye.

Today, too many of us live in fear of reaching the end of our lives because we have no one to care for us at home. Fear of dying among strangers and fear of going broke have become the first reactions of people who begin to face the end of their lives.

These are real fears because most families are just not equipped to take care of a dying mother or father during the last years, months or weeks of their life. The declining elderly often bounce between hospitals and a variety of care facilities as they move closer to the end.

Instead of concentrating on comfort and a peaceful final passage, families of the dying elderly have to figure out if their insurance covers the care that is needed, if there is enough money to pay for a nursing home or private duty help around the clock.

They have to spend time talking to insurance companies, social workers and a host of people in the health care industry to be able to manage the final passage of a family member. The very poor in most states, do not have to worry about the financial piece but that is their only comfort because they can almost be guaranteed that they will die among strangers. Very poor means assets of $2000 or less in Vermont.

Everyone else struggles to find a way to pay the minimum of $100,000 a year for nursing home care because they can't give up their job and care for a parent at home and they certainly can't afford the $20 to $30 an hour that most caregivers are paid.

We will never return to the days of the subsistence, multi-generational household, but there must be a better way for us to care for people as they move closer to death. The modern day hospice movement has helped enormously, but it is only one piece of the puzzle.

Our society needs to talk about this problem openly and for a long time, so that fear will not be the only emotion that shrouds us in our final years.

Richard Davis is a registered nurse and executive director of Vermont Citizens Campaign for Health. He writes from Guilford and welcomes comments at rbdav@comcast.net.