The National Family Caregivers Association (NFCA) cites Rosalyn Carter when identifying family caregivers: "There are only four kinds of people in the world -- those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers."
As true as this statement may be, and despite how important it is, this reality of modern life gets relatively little attention. Literally millions of Americans rely upon a safety net, day to day, week to week. And as the former First Lady presciently stated, a safety net is something that all of us can expect to turn to, sooner or later.
With the above in mind, the NFCA seeks to provide family members appropriate and accurate information and support to enable them to be more effective caregivers. The network of caregivers that we rely on can include, of course, immediate family. But in this era of the far-flung family, many others can play a role, including friends, neighbors, clergy and altruistic volunteers. An attorney I know -- a cancer survivor from a family vulnerable to cancer -- devotes several hours every other Friday afternoon to transporting people in need to radiation and chemotherapy treatments. She waits for the treatment to be done and then drives them home. My friend does this for free, without fanfare. It is simply her way of being part of a caregiving community. She represents a good example of what we could call the silent safety net.
It is not only the fact that we live in the era of the far-flung family, or the fact that most families today find themselves overextended even without the added burden of having to care for an ill or disabled family member, that points to the need for an extended community of caregivers. It is also the fact that ongoing medical advances have become more and more effective at arresting or slowing terminal illnesses. This medical reality has progressively transformed death from a sudden event into a more or less prolonged process. In this scenario families increasingly find themselves caught up in an extended crisis that only begins when a loved one receives a terminal diagnosis.
Toward the end of supporting caregivers the NFCA offers an online library of authoritative educational materials that family members may avail themselves for free of charge. It includes "Tips and Tools" for family members who find themselves confronted with a particular medical problem, or a particular need. For example, individuals who are providing care for someone who is on Medicare, the NFCA offers a guide to accessing preventive care services as well as home based services.
Crisis and Family Upheaval
Equally important, the NFCA offers much useful advice on how caregivers can take care of themselves while also caring for others. In our forthcoming book, "Saying Goodbye: How Families Can Find Renewal through Loss," Dr. Barbara Okun and I detail the crisis that families increasingly find themselves faced with, and the resulting process they will find themselves going through, after a loved one receives a terminal diagnosis. One stage in this process is what we call "upheaval." It refers to the way the prolonged crisis of terminal illness alters family roles, responsibilities, routines and so on as the crisis continues. Despite their genuine concern, their best intentions and their efforts to rally together to the aid of a sick loved one, families today cannot escape the upheaval that this also creates, sooner or later.
As lifestyles become progressively more squeezed by the need to shoulder added responsibilities, families can begin to fray around the edges. Anxiety, depression, family and marital conflict, and even physical illness can be the unintended side effects of prolonged caregiving. This is especially true if that caregiving falls extensively on one or two family members and is not augmented by external support. To make matters worse, without support, family members may find themselves feeling guilty about any discomfort or resentment they may feel -- as natural as these feelings may be. In our book we offer suggestions for how families can successfully navigate their way through this difficult stage of what we call "the new grief." One of those suggestions, to be sure, is to turn to resources in the community so as to make caregiving the kind of community responsibility it rightfully should be.
For those who wish to join the large and growing community of caregivers, the NFCA also offers visitors the option of joining the Caregiver Community Action Network (CCAN). There, volunteers can describe their own caregiving experiences, share valuable lessons they have learned, and point others to useful resources and information. CCAN members also attend conferences and workshops and report back to the network on any new and useful information and resources they discover.
The NFCA represents a very promising and vital development in our society. Like other such web sites, such as LotsaHelpingHands, it offers families in need much needed support, advice and even concrete help such my attorney friend has to offer. In recognition of the estimated 65 million family caregivers in this country, November is designated National Family Caregivers Month. Bill Clinton was the first President to make that designation, as has every President has since then.
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