The Caregiver's Companion

By Carolyn A. Brent

Everything you need to know to ensure that your elderly loved one is being properly cared for.

People today are not only living longer, they are also living sicker–making aging and caring for elderly loved ones more complicated than ever before. In this extensive guide, caregiver advocate Carolyn Brent outlines a step–by–step process so caregivers know what to do and what to ask in every situation that may arise, including:

 Signs that your loved one needs more assistance:

– What to look for in a retirement home
– Caretaking in your own home
– How to ensure wills are in order
– How to manage difficult family relationships
– Ensuring  you are getting the help and care you need

Brent leaves no stone unturned, provides personal stories and scenarios for context, and includes other references and resources in this complete guide to caregiving.

Carolyn Brent is a nationally acclaimed author, speaker, and caregiver advocate who has dedicated her life to preparing the elderly and their caregivers to face end–of–life issues. She is the founder of Caregiver Story, a non–profit organization that provides free medical and legal resources to the public, and founder of Grandpa's Dream, a program that provides vital information for the care and welfare of sick and disabled people and supports the mental, physical, and emotional well–being of caregivers. She lives in Florida.

• Language: English
• Publisher: HarperCollins Publishers Australia
• Release date: Feb 1, 2015
• ISBN: 9780857996367

Carolyn A. Brent

CAROLYN A. BRENT, M.B.A.   “AMERICA’S CAREGIVER EMPOWERMENT STRATEGIST” has been featured on ABC, NBC, and CBS. A frequent media guest and expert advisor on the subject of caregiving and its related issues, Brent is featured in all forms of media, from print to radio and TV.  Brent is a nationally acclaimed author, speaker, and caregiver advocate.          

Book preview

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THE CAREGIVER’S COMPANION

Carolyn A. Brent

www.harlequinbooks.com.au

Dedication

To my dad, Pastor William L. Brent, Th.D.

I will be forever grateful to have been blessed with him,

the most wonderful and amazing parent I could have

ever hoped or asked for. And a special dedication and

thanks to the unsung caregivers throughout the world.

Contents

Preface

Introduction: Talk Early, Talk Often: My Caregiver Story

Chapter 1: When Should You Step In?

Chapter 2: Caring for Your Loved One at Home

Chapter 3: Moving Your Aging Loved One into an Assisted-Living Facility or a Nursing Home

Chapter 4: Emergencies and Life-or-Death Decisions

Chapter 5: Hospice Care for the End of Life

Chapter 6: Crucial Emotional Conversations

Chapter 7: Crucial Financial Conversations

Chapter 8: How to Have Crucial Conversations When Your Aging Loved One Is Resistant

Chapter 9: Crucial Legal Conversations

Chapter 10: Taking Care of Yourself When You Are a Caregiver

Chapter 11: The Caregiver’s Cheat Sheet

Acknowledgments

The Caregiver’s Empowerment Strategy Resources: Programs and Services to Help Caregivers

About the Author

Preface

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My dad and I were very close. As a single parent, he raised me from the time I was twelve until I was nineteen, the age at which I left home. That year I moved from Denver to Los Angeles to explore the world. Dad remarried and we remained close. Over the years, I’d look forward to his visits to Los Angeles each March to celebrate his birthday and catch up. Because Dad was a church pastor, he used our special time together to share the word of God with me.

There was one birthday visit I’ll never forget. I decided to take Dad to Redondo Beach on a Wednesday afternoon. Hardly any people were around, and it was a beautiful day. The ocean was misty, and the moon had risen and was hanging above us in the sky. Dad and I walked along the beach for a while, until we found a comfortable spot to sit in the sand. Then, as we sat gazing at the water and listening to the calls of the seagulls and pelicans that were gracefully flying by, he began to talk to me about God’s love for humanity.

Pointing to one pelican slowly soaring high in the sky, silhouetted against the moon, Dad said, Carolyn, do you see that pelican? Imagine if that beautiful bird had only one responsibility in life. What if it had to fly to the moon and drop off a single grain of sand that it was carrying in its pouch, and then it had to repeat this task until all the sand was removed from the face of the earth? Looking directly at me, he asked, How long do you think it would take?

It would take forever, I answered.

The love of God and my love for you are eternal, he said. Even after I’ve gone to glory, for as long as it would take a pelican to remove the sand from the earth a grain at a time, that’s how long my love will be with you.

That was the first time I can recall Dad speaking with me about the prospect of his death. Of course, I didn’t really want to discuss it, and, in fact, I think I changed the subject. Being in my twenties then, death seemed far off. On some level, I felt that Dad would live forever and nothing bad could ever happen to him. But I also made a vow to God on that day that I’d always be there to take care of Dad if he needed me. Later on, I did my best to honor this promise.

My dad was my best friend, my hero and my adviser, and I hoped and prayed he’d be with me forever. The good times I had with him continued for the next thirty-three years, and there were many opportunities for us to discuss his end-of-life wishes. We did the best we could to prepare.

But when I became his caregiver, I discovered that knowing someone’s wishes is not enough. Even doing the necessary paperwork to ensure that end-of-life wishes will be fulfilled does not always protect an elderly parent or a loved one, particularly if other family members disagree with the arrangements that have been made. Even if you try to do the right things and do your best to prepare for every possible scenario that might arise, like the chronic illness of a parent and the costs associated with it, you can never be too prepared.

Talk Early, Talk Often:

My Caregiver Story

In 2008 I became an accidental expert on end-of-life plans and caregiving due to the circumstances that surrounded my father’s failing health. For years I had tried, unsuccessfully, to talk with my siblings about the medical and financial needs of our aging father. He was in his seventies at the time and was suffering from the early stages of dementia and a variety of other health problems.

I felt I should initiate the conversation about my father’s needs because of my close relationship with Dad. I had lived with him when I was growing up, but not all my siblings had. My family is quite large. My twin sister and I were the fourth and fifth born of eight siblings, seven of whom were from the same mother. When I was twelve years old, my parents divorced. I followed my father to his new home and lived with him until I graduated from high school. I was the firstborn twin. My twin sister and two younger siblings were raised by my mother, and my three older brothers were raised by my father. When I was nineteen and had already left home, our father remarried and my youngest sibling—the eighth child—was born.

There were many reasons why I decided to live with my father when I was a preteen. I truly believe he saved my life by helping me escape my mom’s dysfunctional household. I was fortunate in doing so, as he became my greatest ally, my dearest friend and my spiritual role model. My siblings did not have the same experience with my dad as I did, and as adults, before Dad got sick, we lived in different parts of the country, remaining in contact with each other but not forging particularly close bonds. This meant that, unfortunately, the turbulent history of our family would prove to be an immense obstacle to communication when it mattered most.

Sometime in 1998, when our widowed father was living alone in Colorado, I discovered that he was not eating properly and seemed confused. Upon examination by a doctor, he was diagnosed as being in the early stages of dementia. After I flew back and forth from California to Colorado on a regular basis for a couple of years in order to help him manage his affairs, he agreed to move into my home in the Bay Area. I was relieved, as this would allow me to care for him more attentively and contribute to his well-being on a daily basis.

I wanted to share the details of our father’s medical condition with my siblings, as well as his financial resources. So I decided to put together a binder containing several years of his medical and financial records, which would make it possible for us to track mutually our father’s history. I sent each of my brothers and sisters a copy of the binder for their review. All of them asked me just to handle it, saying they did not want to get involved.

As the only sibling among us who had no children, I guess they must have assumed I had extra time and the monetary resources necessary to care for Dad. True, I did have some resources. I was doing well in my career and was prospering financially. I owned a nice house with enough space for Dad. Whatever their reasons, my siblings did not have the crucial conversations with me, each other, and our father that adult children need to have regarding an aging and ailing parent’s health and affairs. As it turned out, we would never have those conversations.

My dad was a decorated war veteran who had earned a Purple Heart in Korea. As a veteran, he was entitled to receive disability benefits from the federal government. Once his medical needs increased beyond the scope of my ability to care for him physically, I placed him in a private care facility. There his monthly expenses continued to rise as his medical needs increased. Only through a combination of Social Security benefits, Veterans Administration (VA) benefits, and cash out of my pocket did we manage to pay for his care.

Then, in 2007, my father had an unexpected life-threatening emergency, and suddenly my siblings wanted to get involved with his care. Given the level of health services my father was receiving, my siblings mistakenly concluded that he had substantial savings, when the truth was that I was working extremely hard to pay his expenses. My siblings used the emergency as a means to take over my father’s care and thus his bank accounts, and filed bogus restraining orders against me in three separate jurisdictions simultaneously, claiming I was neglecting and abusing him. Throughout the time I was waiting on court dates regarding the restraining orders, I could not see my father for any reason. If I had made any attempt to see him, I’d risk going to jail. During this time, I was totally relieved of my role as caregiver and was left completely in the dark regarding my father’s care and well-being. My siblings were put in charge of his affairs, and he was eventually placed on welfare to cover his mounting medical expenses.

I was totally devastated and could not believe how I was ousted overnight from being my father’s sole caregiver after twelve years. In fact, I was left out of the loop entirely, to the degree that my siblings didn’t inform me of my father’s death when he passed in August 2012. I heard about it from a distant relative days after his funeral. I was emotionally, physically and financially traumatized by this whole sad affair. But I’m not one to stay down. I resolved to help other caregivers and their ailing loved ones avoid such a situation. In particular, I wanted to help my baby-boomer generation, all seventy-nine million strong of us. About thirteen million parents of boomers are being cared for by their adult children, and about a quarter of those are in assisted-living facilities.

While caring for my father, I found out that there are many things that can be done both to help the disabled elderly and to avoid family strife. I have been committed to sharing the knowledge I have gained with others. In 2009, a few years before my father’s death, I founded A Caregiver Story, a foundation that provides resources to help family caregivers, to advance understanding of family caregiving and to promote reforms. In 2011 I wrote my first book on the subject, Why Wait? The Baby Boomers’ Guide to Preparing Emotionally, Financially and Legally for a Parent’s Death. And now I have written this follow-up, which contains new and updated information and provides a road map to guide the family caregiver, whether he or she is the adult child of an aging parent or another family member who is providing care.

A key point I make in the work I do on behalf of my foundation and in my books is that aging loved ones and their family need to discuss end-of-life choices and prepare formal instructions for end-of-life care (an advance medical directive) based on the choices made before the aging loved ones start having big medical problems, since such problems could potentially render them unable to make decisions for themselves. Get it all in writing and file the documents in your state court system.

In the work I do and in my books, I also include advice about the emotional wringer you, your ailing loved one and your family members will experience even if there is no family conflict. Losing a close loved one is absolutely shattering. But it’s good to have at least a glimpse of what will happen and know how better to survive it.

The legal drama and emotional trauma I experienced at the end of my father’s life have also led me in recent times to work for legal reform, starting in California, so that the rights of caregivers and their loved ones will be better protected. Currently, vexatious litigation, baseless legal action that is pursued solely to harass or subdue an adversary, is a misdemeanor in every state. The penalty handed down by the courts is usually limited to paying for the harassed person’s court fees, which customarily range from $200 to $500. I believe this misdemeanor should be treated more seriously and the penalty should be harsher.

On February 19, 2013, I testified before the Committee on Aging and Long-Term Care in Sacramento, California, about the nefarious practice of vexatious litigation as it relates to family caregivers. The road I traveled to that day had been a long one. In fact, my trip had begun six years before, in 2007. Let me share some of that journey with you to give you a deeper appreciation for my fight and why I’ve written this book. That year, I contacted the Department of Veterans Affairs (VA) in Oakland, California. In full detail, I shared with officials there what happened to my father and me. The result: The VA took no action.

The next year, in 2008, I contacted the Federal Bureau of Investigation (FBI), located in the same building as the VA, and shared my story with two FBI agents. Weeks later, after the completion of their internal investigation, an agent called me and said, Your complaint is not within the scope of our jurisdiction. I suggest you take this matter to a family law court. Family law court? That’s not an option! I thought. What good will it serve my dad and me when our judicial system is broken? At that very moment I realized I needed to do something far more significant to help change our current laws, with the aim of protecting my father, the veteran, and people like me, the caregiver.

In 2009, I began my pursuit of justice with the sole purpose of changing the laws in California at the federal and state levels regarding the nefarious practice of vexatious litigation against a caregiver.

In 2010, I knocked on the door of my congressman’s office during the busiest time of the year—he was campaigning for a second term—and I didn’t get a meeting. I kept trying to get on his calendar though, even appearing at all of his local events with hopes of bending his ear, but I still had no luck. Finally, a year after the start of my pursuit, I obtained an appointment!

On March 18, 2011, at exactly 3:30 pm, I was given a whopping ten minutes to share my entire story with my congressman. After providing an overview of what happened in 2007, I pointed out a loophole within the federal and state agencies. I explained that I had discovered the state does not recognize a veteran’s end-of-life choices that have been filed legally at the federal level by the veteran. Therefore, if a veteran has not filed the same documents at the state level, the veteran’s wishes are not legally valid or recognized in the eyes of the state. Ultimately, this opens up the doors to the state for disgruntled family members who do not agree with the veteran’s choices, I told the congressman. This loophole, I continued, provides an opportunity for disgruntled family members to practice the act of nefarious vexatious litigation against the caregiver who was chosen by the veteran—exactly what happened to my father and me.

I told my congressman, When my father was cognitive and healthy, he filed all of the VA required legal documents appointing me as his guardian in the event of his disability. Then I paused for a moment and asked the million-dollar question. Of what benefit is it for the veteran to file legal documents at the federal level, if the federal government is not going to protect the veteran’s end-of-life choices on the backend of caregiving, when family members disagree with the choices made by the veteran at the state level and use the act of vexatious litigation against the caregiver? Surely, if my father and I had known about this ‘loophole’ we would have filed the same documents with the state of California as well, to safeguard his wishes.

My congressman then asked, What results are you looking for?

I replied, "Justice for my father’s end-of-life choices, and protection for disabled veterans and their caregivers who have been acting in ‘good faith.’ Most importantly, closing the ‘loophole’ between state and federal agencies by sharing the veterans’