The Family Caregiver: A Survival Guide to Navigating the Healthcare System, Advocating for Your Loved One, and Remembering to Breathe

By Stephanie A. Kennan

An award-winning authority on the healthcare system in the United States, and a daughter who managed her mother's care for years, Stephanie A. Kennan is uniquely positioned to present this book. Combining anecdotes from her own experiences with the policy overviews and hard-to-find details that can be crucial, Kennan weaves together a guide to fulfilling the role of family caregiver.

With empathy as well as an expert's grasp of the facts, Kennan's book will help family caregivers when they need support the most.
The term "family caregiver" describes a person who, like the author, volunteers to help care for a family member, partner, or other loved one as they age and approach death. This book assists the family caregiver to get organized and to navigate the system and advocate for the loved one regardless of the healthcare setting and circumstances. With this book the family caregiver won't have to learn the hard way.

Kennan explains the essential role of patient advocate that the family caregiver takes on: "Not everyone listens and understands the position of the family caregiver—and every healthcare system seems to have a different way of communicating with families and patients. No one stops to explain unless you make them slow down and spell things out."

The author advises readers to "use the book to get help feeling more in control at times when it can feel as if very little can be controlled at all. The Family Caregiver is not meant to be a dictionary, nor is it a simple narrative, or a how-to book. Instead, it's a curated collection of the things no one tells you. If you keep it handy, you'll be able to return to this book throughout your journey as a family caregiver."

• Language: English
• Publisher: Morrowdale Press
• Release date: Oct 12, 2021
• ISBN: 9781736707814

Book preview

Introduction

Use this book to organize yourself so you can navigate the system and advocate for your parent or other loved one regardless of the healthcare setting and circumstances. With this book you won’t have to learn the hard way. Use the book to get help feeling more in control at times when it can feel as if very little can be controlled at all.

The Family Caregiver Companion is not meant to be a dictionary, nor is it a simple narrative, or a how-to book. Instead, it’s a curated collection of the things no one tells you, such as— in addition to the big things—what a POLST is. If you keep it handy, you’ll be able to return to this book throughout your journey as a family caregiver.

Here’s an overview of what you can expect and where you can find it. Look for the materials that apply to you and your needs. You can come back later when your needs have changed, when it’s time to revisit the information, or to get new questions answered.

We first look at the role and place in American society of the family caregiver. That’s the term I use to describe a person who volunteers to help care for a family member, partner, or other loved one as they age and approach death.

Then we get into details about the paperwork the family caregiver may need in order to manage the healthcare and financial dealings of the patient. It’s important to gather the specific information required, so that ongoing administrative tasks can be done as smoothly as possible. Family caregivers have so many responsibilities and concerns—it makes sense to have the paperwork in place so that it doesn’t become another thing to worry about.

The realm of legal paperwork comes next. It’s more complex than just wills and living wills. Learn about the various kinds of advance directives your loved one may want or need, the meaning and use of DNR and POLST orders, and the types of powers of attorney. Then determine which of these you have now, and those you may need to obtain, for the present and in the future.

From there, we address the well-being of the family caregiver. The role is challenging in many ways that can result in anxiety, depression, anticipatory grief, and guilt. We face those issues and consider how to manage expectations and promote self-care.

The crucial relationships between the family caregiver and the loved one’s physicians are explored in the next chapter. Here, we share stories, pointers, and advice for the best ways not only to keep communication lines open, but also to advocate for the patient while maintaining these key relationships.

Wherever your loved one is living, it’s likely they’ll encounter hospitals. We present the family caregiver’s guide to visiting hospitals, working with them, keeping them accountable, protecting the patient’s interests, and more.

We then look into all the kinds of care that may be available for an aging loved one. Collectively known as long-term care, these range from home health care to CCRCs, and can be dizzyingly complex to consider. First, we explore the forms of long-term care available to a loved one in the home or neighborhood. The following chapter investigates the various facilities to which a person can move, when staying at home is no longer possible or desirable.

When the end of life is nearing, hospice care and palliative care are often welcome and very helpful options, for both the loved one and the family caregiver. Palliative care can also be used at other times before the end of life. Note that hospice care can take place in the patient’s home; in a hospital, nursing, or other facility; or in a dedicated hospice facility. We look at the pros and cons of hospice care and the advantages to starting it sooner than later.

The next chapters delve into insurance in all its forms: Medicare, Medigap, Medicaid, and long-term care coverages. You’ll learn details about each type of insurance, including what they do and do not cover, which parts are regulated by the federal and state governments, and much more.

We close the book with an important chapter on the business of taking care of the affairs of someone who has died. These duties may well fall to you as the family caregiver, and you can prepare yourself here, so that you’re able to do the work that needs doing at the same time that you are grieving your loss.

In her Afterword, the author looks back on being a family caregiver during the COVID-19 pandemic, and reflects on impacts this collective experience will have on caregivers as well as on long-term care planning and policy.

At the back of the book you’ll also find information about the author and her website, a glossary of terms, extensive resources for further reference, and an index to give you quick access to topics you need to investigate.

1

Aging and Family Caregiving: Women, Economics, and Options

The Family Caregiver

You can fall into the role of caregiver to a family member slowly or quickly. It came quickly for me, when my mother had a stroke and it was clear she could no longer live alone. I took over her finances and made decisions about what would be the ideal living situation. As she declined, including a fall that ended any pretense of independence, I also made sure her wishes about how she was cared for were followed. I became another of the one in five Americans who are responsible for ensuring the care of a family member.

For the last three years of her life, my mother was in a nursing home where professionals provided the hands-on care. I was still in the caregiver role, because I managed her finances, showed up for regular visits, ensured she had what she wanted, attended care plan meetings, and was on call 24 hours a day 7 days a week when she needed to be calmed down—or to be told to take her medicine when she refused. Sometimes that meant driving over to see her for a second time in the day, and at other inconvenient times, to look her in the eye and say, Take your meds, Mom, and answer her when she asked me why she had to take her meds because she felt just fine.

I made sure her toenails were cut, her hair was done, and that she had her newspaper every day. I asked questions, talked to her physicians, knew her aides, participated in discussions about what drugs my mother could forgo at her age. I advocated for her when things were not going well and when all seemed to be going smoothly.

What Is Doable?

Family caregiving often is the art of determining what is doable—and when. To solve problems, I had to figure out what was possible, and sometimes what my mother wanted or what I wanted was out of reach. I made decisions about getting insurance for her hearing aids, sold her car, and watched cooking videos with her on Saturdays. When another patient was bullying my mother, I flagged it for the facility’s leadership and worked with the nursing home to resolve the problem.

The Family Caregiver’s Role

No one’s journey through caregiving is the same as the next person’s, but there are common elements. I once asked a friend how he ended up being responsible for his mother. His response was that of the four boys, he had the least emotional baggage with his mother. (He also did not think it was his wife’s job to do it.)

Another friend, whose mother was in an expensive assisted living facility that did not accept Medicaid, said he had not had time to think about the choices, so he went with what was close and available. He hadn’t considered whether she would outlive her funds. Then he started to worry about how long his mother was going to live and whether he would have to move her to a place that accepted Medicaid.

Another friend found that her mother did not want to leave where she lived, so my friend began to figure out how to structure something around keeping her mother at home. Six months later, she suddenly realized she was a family caregiver, 500 miles away from her mother. Her next step was to spend several months wondering whether she should move to be closer to her mother.

One friend thought her mother was fine, but after her father died she began to slowly take over her mother’s finances so her mother wouldn’t write small checks to the many charities that were filling her mother’s mailbox with requests. Yes, that is caregiving, too. Her mother still frequently asks whether she can contribute to the many mailings she receives. My friend travels to California from Washington, DC, two times a year to make sure her mother’s house is being maintained and, as she says, to just check outside of holidays and other times when I might miss something that means I need to do something else.

One friend’s father needed rehab after falling down the stairs. Her brother, who was in charge of their father’s care because he lived closer, said they could not afford rehab. My friend had to let her brother know that Medicare would pay for rehab services.

All these people, in different ways, are filling the role of family caregiver. We’ll use the term family caregiver throughout the book to describe these people—whether related by blood or by choice—who serve in a wide variety of capacities to support the health and well-being of an elderly or disabled person.

The American Healthcare System

There are two overarching parts to our healthcare system: (1) acute care and (2) post–acute care. Acute care is provided in primary care settings and in hospitals. Post–acute care can be a wide variety of services, from rehabilitative services and home health to facilities like assisted living and skilled nursing facilities (SNFs). Our healthcare system is often described as fractured because there are so many pieces to it, often without coordination. How to both save costs and coordinate the care are the subject of many policy debates. I can attest that many times the healthcare system does not behave in a consumer-friendly manner.

I was lucky: my mother had assets to draw upon to pay for the best situation possible at once, before her long-term care insurance would kick in. My mother had organized her investments in a trust, had multiple documents instructing how she wanted to be cared for, and did not try to second-guess my decisions for her (most of the time). I did not do hands-on care unless I was visiting her, and even then, I could ask for help. Yet, the emotional drain was every day.

In fact, on many days in the last three years of her life, I had no bandwidth for issues in my own life. Her care and needs were at the forefront at all times. A social worker once said to me in passing that just the thinking ahead for my mother could become a real drain on my energy. That was true. Another source of stress was seeing the signs of her decline, which I could do nothing to stop. Studies have shown that even after the death of the patient, family caregivers can show exaggerated cardiovascular responses to stressful conditions, which put them at greater risk than non-caregivers for the development of health concerns like high blood pressure or heart disease. Women providing care are more likely to report a personal history of high blood pressure, diabetes, and higher levels of cholesterol. These issues can continue after caregiving ends.¹

I also was lucky because for some aspects of my job, I did not need to be in the office. I could often get some of my work done after hours. I could do conference calls in parking lots, while driving my mother to doctor’s appointments, and in lobbies of buildings. I could arrange my travel schedule so that if I had to be away, I could participate in care plan meetings via phone while I was waiting at the airport for my next flight. Not everyone has the work flexibility that I had, and not everyone has a car.

Initially, I looked at my mother’s immediate health issues as something short term. That lasted about 30 days. Then, too many professionals to be ignored pointed out reasons why she should not be living alone. However, her longtime personal physician told me that things were fine. How do you evaluate conflicting information? This is all part of the family caregiver’s journey.

According to the National Alliance for Caregiving, today 21.3 percent of Americans (one in five adults) are caregivers, providing care to an adult or special-needs child at some time in the past 12 months. This is an increase from about 18 percent in 2015.² One in six Americans who are non-caregivers expect to become family caregivers within two years. In the United States, it is a bleak picture for women. Although men do provide care, women provide more hours and often do the difficult tasks of assisting with toileting and bathing while men tend to handle finances. Nearly two-thirds of family caregivers are employed fullor part-time. Of current caregivers,

•30 percent have provided care for at least 20 hours per week,

•over half assist with personal care,

•58 percent are women and 20 percent are 65 years old or older,

•37 percent are caring for a parent or parent-in-law, and

•nearly 10 percent are providing care to someone with dementia. ³

Access to services and how they are paid for also demonstrate a wide disparity based on income. For example, long-term care insurance is expensive—and some debate the need for it, as its real purpose is to protect a person’s assets, rather than to provide care.

•Unpaid family members and friends provide 83 percent of all long-term care in the United States, and two-thirds of older adults rely exclusively on free care. The estimated economic value of this unpaid care is $470 billion a year.

•Medicaid, a public program paid for by both the federal government and state governments, pays for 62 percent of long-term care for nursing home residents, which covers 51 percent of all long-term care costs. This means that Medicaid is the default long-term care system in the United States. ⁴

Caregiving can have an economic impact on the family caregiver in multiple ways. The family caregiver can lose wages and work time, and their work performance can suffer because of exhaustion from taking care of the patient.

Demands for eldercare are growing with the aging of the baby boomer generation, and with the increasing number of Americans living with Alzheimer’s disease and other forms of dementia. Shortages of home health aides and aides for other settings mean that family caregivers are going to be even more important in the future. Some studies have shown that in the economic downturn that started in 2008, many caregivers had to move in with their family member—or vice versa—to reduce expenses.⁵

During the COVID-19 quarantine, news reports detailed the complexity of caring for a dementia patient at home. News reports also documented the quandary of home health agencies during the pandemic and quarantine period. Going from home to home put health aides at risk for the virus, and then their patients became vulnerable as well. The rise of telehealth in home health was one way to continue care, and protect everyone involved. Yet, it was still the family caregiver who was there 24 hours a day, every day, because of the nature of the quarantine.

Studies also show that most Americans are not prepared economically for retirement. That means they are not prepared for the economic storm that being chronically ill, or needing long-term care, causes.

In short, caregiving options often are determined by