care to ensure their loved ones receive the services they have a right to receive and their dignity and well-being are maintained. Those same unpaid family caregivers need to build new skills and acquire knowledge to effectively work within the bureaucracy that is the long-term care facility system.
Make no mistake: No matter the setting, well into the twenty-first century the backbone and front line of patient care and advocacy will be unpaid family caregivers. Without them, the entire American healthcare system will collapse.
Unpaid family caregiving is constantly morphing. As longevity increases, demographics and family structure change, and cultural and societal adaptations play out, new problems are created even as some problems are solved. Care needs for people of all ages created by chronic illnesses, disabilities, and accidents will not decrease. As the Baby Boomers age, their children, spouses, and significant others will begin to assume the role of family caregiver. Thus, the next few decades will find the United States with upwards of 70 to 80 million unpaid family caregivers.
Well into the twenty-first century the backbone and front line of patient care and advocacy will be unpaid family caregivers.
Typically, the role of unpaid family caregiver is “bestowed” without any formal training, awareness, or support from traditional resources (e.g., doctors, lawyers, financial advisers). New family caregivers who are lucky enough to find available community resources are also likely to find those resources overwhelmed, underfunded, and short of space. This reality will continue to be the norm rather than the exception.
The bulk of America is rural in nature, and local, hands-on family caregiving expertise and resources are limited. Moreover, in reality, because of a lack of preparedness on the part of the “System,” this is also the case in urban and suburban areas. Too many family caregivers must depend on the Internet for knowledge. The Internet is an overwhelming “first response” resource but must be utilized with great caution: The bias, accuracy, age of information, and agenda of many websites should be carefully examined before being trusted. The same is true for many individual “experts” who present themselves as reliable sources of unbiased advice. It is far too easy to acquire important-sounding credentials purporting to qualify one as a knowledgeable and competent authority and self-proclaim one’s expertise on family caregiving. In particular, the geriatric “Gold Rush” has brought with it clinical and nonclinical charlatans and “snake-oil salesmen” espousing cures and techniques that science has yet to identify, quantify, and prove effective, let alone useful, in treating the diseases and conditions that afflict us most. As always, “let the buyer beware”—unpaid family caregivers should seek to educate themselves before becoming a buyer.
Considering the nature of the caregiving demands in the future, family caregiving should be an area of study in every school’s program of instruction, from grade school to post-graduate studies. Family caregivers deserve access to every opportunity to prepare themselves for the challenges they must meet. This manual is a training tool for today’s family caregivers and for the family caregivers of the future.
This undertaking could not have been possible without the hours, days, and weeks of effort by editor, colleague, and business partner, Brenda K. Bryant. Her years of professional writing and editing were the only reason my caregiver ramblings were shaped into the Manual. To her I will be eternally grateful.
Also, I am forever indebted to Sharon Rose, President of Wisdom Production, for her foresight in submitting the Manual to the FCOA for award consideration. Without her determination, the recognition of the Manual by receiving the award would not have been possible.
I would like to extend a special thanks to the staff of Central Recovery Press for their valiant efforts in editing this new edition of the Manual. Brenda and I have long needed other eyes to look, point out our errors and oversights, and help us resolve the usual problems that arise when those who are passionate about content are too close to the words to see. Valerie Killeen and Daniel Kaelin applied their considerable skills at editing, and Deb Tremper her design talents to make the Manual even better than it was.
To the thousands of family caregivers with whom I have interacted, I give my undying thanks for the wisdom and insights you have imparted to me over the past twenty-five years and offer my gratitude for your continuing to do so.
To the professionals over the years who have helped me hone my skills and focus my perspective, I must say that without all of you this undertaking never would have been completed. I hope I have contributed my share to our collective pool of knowledge.
I am unendingly thankful for the support and understanding of my wife, Suzette, who led me to my profession as a family caregiver advisor. She constantly supports and endures my laboring in the field that carves out a big portion of our lives—my long hours spent at the computer, in family caregiver support groups, away from home providing individual counseling, and in responding to the ceaseless stream of phone calls and emails from family caregivers worldwide. She is my greatest critic and my staunchest supporter.
Lastly, and equally important, without the undying devotion of Maggie (Bloodhound), Kenzie (Black and Tan Long-Haired Dachshund), Angus (Dappled Red Short-Haired Dachshund), and Mac Jagger (Teddy Bear Pomeranian and Manual mascot), this never could have happened.
Past and recent experience has taught us that the family is the primary source of all nonclinical family caregiving. It is also increasingly clear that insurance plans and government programs will never be sufficiently funded, staffed, or motivated to meet all the needs of people who are frail, disabled, or chronically ill, regardless of their ages or the nature of their care.
There is no magic bullet that can make family caregiving easy, but there are practical steps you can take that will make the burden more manageable for you and other caregivers in your family. Therefore, as you work through this manual, you will find explanations of what to do to make family caregiving easier today and going forward.
The American Society on Aging defines a family caregiver as “a person who cares for family—loved ones’ elderly or frail; anyone with a physical or mental disability.” Other sources refer to “unpaid caregivers” or “informal caregivers.” Everyone knows the broadly defined role of the family caregiver, but the role of the individual family caregiver is unique and not so easy to define.
Family: Can it be defined only as a group of people related by blood or marriage? Many people have no blood relatives, no spouse, no siblings, no child—no family in the traditional sense. However, life structures today include partners, significant others, and close friends who are included in the term “loved ones.” Many of us depend solely on friends or neighbors to be our real family. The bonds of many kinds of relationships now define what family relationships are, and these newly defined families, along with blood-related families, are today’s family caregivers.
Roles of family vary. Caregiving is both a tool
