5. Why Document?
Does Everyone Need Legal Documents?
Get It Organized—Make It Handy!
6. Critical Information—The Lists
The Caregiver’s List
The List for the Person Needing Care Now or in the Future
7. Thinking About “What If . . .?”
Overcoming Objections
When You Are Already Giving Care
What Can You Do?
Getting Things in Order
Starting the Discussion About Caregiving Needs
Knowing When Care Is Needed
You Are Planning, So What Else?
Planning for Financial Needs
Putting Care into Place
Crises
What You Need to Know in an Emergency
8. Practical Problem Solving
Addressing Medical and Health Needs
Questions to Ask the Doctor
Overall Housing and Care Needs
Security/Safety/Condition Check
Hiring a Paid Caregiver
Fundamentals of Hiring and Managing In-Home Care Services
Using In-Home Care from a Home Healthcare Agency
Complaints
Your Role When Someone Else Gives Care
Advocate for a Person Living Away from Home
9. Someone Else Deserves Care—You!
Rate Your Caregiver Stress
Plan for Stress Reduction
10. Understand Continuum of Care
How Much Care Is Needed?
11. Write Your Plan/Make It Work
Sample Narrative and Plan
12. Additional Resources
Appendix: The Family Caregiver Questionnaire
Development of The Family Caregiver’s Manual has been a work in progress and will continue to be even after publication of this revised edition. Receiving the recognition of the Florida Council on Aging (FCOA), which awarded the Manual the 2013 FCOA Quality Senior Living Award for Senior Vision in Media, has made this effort even more gratifying.
When my editor Brenda and I undertook the Herculean task of preparing this edition of the Manual, we knew the content had become even more relevant in the three years since the first edition was published. Those three years saw major developments in the growing need for family caregiver education and support, including new information on a wide range of disabilities and diseases and advancements in the acute care healthcare system that will have long-ranging effects. This new edition is not only an update and enhancement of what we have done previously, but it also underscores the fact that as the number of family caregivers has increased by more than 10 million since 2010, the role of unpaid family caregivers has grown ever more important.
Because of the increasing complexity of care, both clinical and nonclinical, the skill set needed for unpaid family caregiving has never been more formidable. Not in recent memory have our innate human instincts and learned skills been so misaligned with those needed to solve the practical problems encountered by unpaid family caregivers and the broad spectrum of demands placed on them.
While home care provided by paid caregivers is clinical, the tasks performed by informal caregivers are not. Understanding and providing the clinical care required is necessary (e.g., providing correct wound care, ensuring insulin injections are at the proper dosage and given at the proper time, and correctly taking blood pressure). However, as my colleagues and I have monitored the tasks performed by thousands of unpaid family caregivers and paid caregivers in the home over more than twenty-five years, we have found that clinical care comprises only 15 percent of the family caregivers’ efforts. The remaining 85 percent of their caregiving time is used for nonclinical care—to do practical problem solving for everything that is not clinical (e.g., addressing legal and insurance issues, arranging medical appointments, providing or arranging for transportation, and resolving family conflict). Moreover, the demands of meeting physical needs typically increase in complexity, as does the challenge of solving day-to-day practical problems such as accessing additional resources.
Thus, the need to prepare today’s family caregivers for the inevitable increase in practical problem solving is a given, but we also need to acknowledge that our homes will remain the de facto setting for care. Even now institutional settings are limited and often inadequate in terms of quality of care, and with rapidly increasing demand for care in all settings, finding quality care outside of the home will become increasingly difficult and expensive.
Home is where we are most comfortable and where care is most affordable. There is no “game book” for this, no standardized set of rules, guidelines, and solutions that will meet the diverse care needs of millions of families. The only option available for family caregivers is to have a Plan designed to meet their loved ones’ needs and for everyone to be flexible and realize their limitations.
It is becoming very obvious to family caregivers and, at long last, to the public at large and a broad range of decision makers in government and healthcare systems that home-based care provided by unpaid family caregivers is the only viable option for the majority of chronic care in the coming decades. The services provided by community-based organizations are at capacity. Funding from private, state, and federal sources is diminishing. Demands for qualified, paid in-home workers cannot be met. Home-based care is not just an option for care—it is a necessity and likely to be the only option for care for most families.
Today, many facilities are full or have lengthy waiting lists for admission, while fees for institutional care are rising annually. If placement in a facility is required and can be arranged, the “roof” over the head of the person needing care may change, but the importance of the role of unpaid family caregivers will be unchanged because now they must become active advocates in a non-home setting. As advocates, unpaid family caregivers
