"A timely, thought provoking page-turner that should be considered a desk reference for caregivers and those who would be caregivers of all ages."
—Rawle Andrews, Jr., Esq., Regional Vice President, AARP
Why Wait?
The Baby Boomers' Guide to Preparing Emotionally, Financially, and Legally for a Parent's Death
Carolyn A. Brent, M.B.A.
Published by Grandpa's Dream LLC on Smashwords
****
Grateful acknowledgment is made for verses of scripture taken from the Holy Bible, NEW INTERNATIONAL VERSION®. Copyright © 1973, 1978, 1984 by Biblica, Inc. All rights reserved worldwide. Used by permission.
WHY WAIT? Copyright © 2011 by Carolyn A. Brent. This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.
A print edition of this book is also available. For info contact: John@CaregiverStory.com.
The information and advice published or made available in this book is not intended to replace the services of a physician, attorney, or any professional or government organization. The author and publisher make no representations or warranties with respect to any information offered or provided in this book regarding effectiveness, action, or application of the protocols herein. The author and publisher are not liable for any loss or damage, direct or indirect, resulting from use of the information contained herein. Furthermore, readers should be aware that websites listed in this work may have changed or disappeared between when this work was written and when it is read. No warranty may be created or extended by any promotional statements for this work.
ISBN-10 0615475019
ISBN-13 9780615475011
Website: www.CaregiverStory.com
Email: Carolyn@CaregiverStory.com
1. Aging Parents 2. Family Relationships 3. Self-help 4. Home Care 5. Alzheimer's Disease 6. Financial Planning 7. Legal Planning 8. Death and Dying
Cover Design: Renee Duran
Interior Design: Shaila Abdullah
Editor: Stephanie Gunning
Photography of the white American pelican: Copyright © Ron Boily
Photography of the Sonoma Beach State Park: Copyright © Grant Kinney
****
DEDICATION
To my dad, Pastor William L. Brent, Th.D.
I thank God to have been blessed with him, as the
most wonderful parent I could have ever hoped for.
****
Introduction Talk Early, Talk Often
Chapter 1: When Your Parent Can No Longer Live Alone
Chapter 2: Moving Your Parent into an Assisted-living Facility or Nursing Home
Chapter 3: Emergencies, Life-or-Death Decisions, and Hospice Care
Chapter 4: Crucial Emotional Conversations
Chapter 5: Crucial Financial Conversations
Chapter 6: Crucial Legal Conversations
Chapter 7: Taking Care of Yourself When You Are a Caregiver
Why Wait? Resources: Programs and Services to Help Caregivers
****
My dad and I were very close. As a single parent, he raised me from the age of twelve to nineteen, the age at which I left home. That year I moved from Denver to Los Angeles to explore what the world had to offer me. Dad remarried and we remained close. Over the years, I'd look forward to his visits to Los Angeles to celebrate his birthday with me each March. We would catch up and talk about a wide range of subjects during these visits. Since Dad was a church pastor, among other things he used our special time together to share the word of God with me.
As long as I live, I'll never forget one of his birthday visits. I decided to take Dad to Redondo Beach on a Wednesday afternoon. Hardly any people were around, and the day was beautiful. 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 us, 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 of 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, 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. He was my best friend, my hero, and my adviser, and I hoped and prayed he'd be with me forever. Later on, I did my best to honor this promise.
The good times I had with my dad 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 paperwork is not always enough to protect an elderly parent and a family caregiver, 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, the chronic illness of a parent and the costs associated with it are challenging to manage.
****
Talk Early, Talk Often
When parents are raising children, they often speak with them about the great things they can accomplish in life, and help them to develop plans to achieve their dreams. Parents and children plan ahead and make decisions about graduation, where to go to college, career paths, weddings, births, family vacations, and retirement. Probably you can remember having those kinds of planning discussions with your parents. But think about the last time a discussion of end-of-life issues and death came up at your family dinner table as a future plan. Did it ever?
If you've never spoken with your parents about death and dying, you are not alone. Even when people do talk about such things, often the right documents aren't put in place to ensure people's desires are carried through. Nearly 55 percent of the American population has neither a living trust nor a will in place explaining how they'd prefer their medical, financial, and legal affairs be managed at the end of their lives. They haven't made choices about what happens if they're sick or dying, like who should pay their bills and oversee their medical treatment; they also haven't given their chosen advocates the legal authority to make decisions on their behalf.
Obviously there are big issues of denial going on in our society. Although no plans are set in place for death, death is guaranteed. Sooner or later our aging parents will die—and so will we.
Why Family Conversations Are Crucial
According to Senior Journal, there are over 79 million Baby Boomers in the United States. Baby Boomers are people born between 1946 and 1964. The parents of Boomers in their late forties have reached their sixties and seventies. Boomers in their sixties have parents already in their eighties and nineties. The point is, if you're a Boomer, then preparing emotionally, financially, and legally for your aging parent's end-of-life needs and death is increasingly relevant. The need for planning has become even more imperative than it was in decades past because our aging population is living longer, but not necessarily healthier; meaning, we are confronting a different set of medical concerns and choices than our forbears did.
For the elderly, now is the time for conversations about end-of-life issues to take place with their children, not later. And if your parents don't bring the subject up, as a concerned child you should. I call these conversations "crucial" because the outcome matters. I like the definition of a crucial conversation in the book Crucial Conversations by Kerry Patterson, Joseph Grenny, Ron McMillan, and Al Switzler (McGraw-Hill, 2002). These co-authors say a crucial conversation is one in which opinions may vary, stakes are high, and emotions run strong. Tough issues are being addressed and the results have a huge impact on your quality of life. If crucial conversations are done effectively, they transform lives and can help a family to bond.
Why wait to begin talking? Why wait until there is a crisis? It is much better to hold these crucial conversations early when your parents are still healthy and can articulate their wishes, needs, and concerns. When a family has a plan, it is much easier to work together as a team.
My Caregiver Story
I became an accidental expert on end-of-life plans and caregiving due to circumstances. For years, I tried unsuccessfully to talk with my siblings about the medical and financial needs of our aging father, then in his seventies, who was suffering from dementia and a variety of other health problems. I felt I should initiate the conversation because of my close relationship with Dad. Growing up, I lived with him, though not all of my siblings did. My family is quite large. My twin sister and I were fourth-born among eight siblings, seven 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. My twin sister was raised by my mother, along with our three elder brothers and one younger sister then alive. When I was nineteen and had already left home, our father remarried and my youngest sibling was born.
There were many reasons why I decided to live with my father when I was a teen. I truly believe he saved my life by helping me escape a dysfunctional household headed by my mom, in which it was hard for me to thrive. 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, which meant that, unfortunately, the turbulent history of our family would prove to be an immense obstacle to communication when it mattered most.
As an adult, before Dad got sick, my brothers and sisters and I were adults living separate lives in different parts of the country; in contact, and yet not particularly intimate. In 1998, our widowed father was living alone in Colorado when 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 flying back and forth 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 California, where I could care for him more attentively and contribute to his well-being on a daily basis.
I felt it was important to share the details of our father's medical condition with my siblings, so I put together a complete binder containing several years of medical and financial records that would make it possible for us to mutually track our father's history. I sent each of my brothers and sisters a copy of this five-inch binder by Federal Express for their review. However, after they got copies of the binder, 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 resources necessary to care for Dad. True, I did have some resources. I was doing well in my career and prospering financially. I owned a nice house with enough space for him to live with me. Whatever their reasons, my siblings flat-out refused to have the crucial conversations with me, each other, and our father that adult children really need to have regarding an aging and ailing parent's health and affairs. They were simply too busy with their own lives, and so we put off talking. In our family, this led to an extremely bad outcome.
My dad was a decorated veteran who 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 increase as his medical needs increased. Only through a combination of social security benefits, Veterans Administration (VA) benefits, and paying cash out of my pocket, did we manage to pay for his care.
Conflicts arose between me and my siblings when it reached the point where they thought our father was dying. Then, all of a sudden it seemed to me, they wanted to be involved. They took me to court. For me, this was the beginning of a nightmarish chain of events. My twin sister was able to get a restraining order against me, forbidding me from visiting Dad without supervision. She got a judge to agree to this by making allegations in court—false allegations—that Dad was dying because of how I cared for him when he lived in my household, and because my other siblings got on board with her.
The basis of her claim was that at one point Dad took a fall while out jogging. Though his condition was deteriorating at the time, he could still function well enough back then to lead a fairly active life. However, this fall later on led him to develop hydrocephalus, a condition commonly known as "water on the brain," which played a role in the dementia he was experiencing. My sister used that fact as part of her evidence against me.
After being dragged through courts in several jurisdictions, including a probate court, our father was ultimately placed on welfare to cover his medical expenses. My dad did not die. He's alive and residing in a care facility. My siblings are in charge of his affairs. Since then, I've watched from afar as Dad's condition has worsened. I am angry and sad, and concerned, because it is the quality of the end of his life that is at stake—and because it really did not have to be this way. Given the option, I would gladly have continued being his primary caregiver. I miss him.
Having a crucial conversation or series of conversations as a family might have spared my siblings and I from discord. Instead of fighting, we could have created an opportunity for healing and resolving our relationships, and developed a strategy together where we pooled our resources to plan for, and manage, the challenges of our aging father's illness. As sad as chronic and progressive illness is to face when a parent is undergoing them, through active discussions greater clarity and mutual decision-making about finances and medical care can occur.
When a parent—or anyone, for that matter—reaches the end of life, there needs to be a way provided for that person to die with dignity and in relative peace. For children, this can be a difficult transition during which confusion and strife are not optimal.
Through struggling with the legal, medical, financial, and familial issues that come up when adult children handle such matters poorly (whether due to denial or to strife), I discovered there were no books on what needs to be covered and planned for, written from the perspective of siblings. Siblings have special needs at such times and, ideally, can be of great comfort to one another. I found no books that discussed the ideal scenario of sibling conversations versus the worst-case scenario of no conversations, as well as cases when sibling rivalry and resentment are allowed to interfere with planning and care. My siblings and I are living proof that this can go very, very wrong, leading to no one's benefit: neither the children's, nor the parent's.
The more research I did, the more committed I became to spreading the important message that planning is critical, and families must begin talking to one another as early as possible. For the past few years I've traveled across the country giving lectures at churches and to members of organizations with an interest in these issues, and I've spoken with numerous family caregivers. I set up www.CaregiverStory.com to disseminate resources to help family caregivers. I've gone on radio and television. I've worked to pass new laws in Congress. Now I've written Why Wait?
What This Book Covers
My goal in this book is to offer you insight as to why it is crucial for adult children to have conversations with their aging parents while the parents are still relatively healthy. These crucial conversations should cover the issue of what to do if a parent becomes disabled or ill and requires caregiving, and how to manage the parent's estate when they die. Perhaps the greatest need I intend to address in this book is the need for appropriate documentation. A parent needs to put in place an advance medical directive and a living trust, establish a will, and appoint an executor for his or her estate. In this book, I'll explain what is expressed by those documents and why they are necessary. I'll also expose the pitfalls of not preparing this type of documentation.
Grown siblings also need to have conversations with one another about caregiving for an aging parent. Obviously age alone is not the reason children would need to step in and begin to manage a parent's life. A healthy elderly person does not require a caregiver. However, the need for family caregiving typically increases as the parent ages, and in responding to that need siblings should ideally work together. In this book, I'll cover issues that children who are their parents' family caregivers often face, like dividing the workload, sibling rivalry, and handling disagreements. Sometimes siblings refuse to participate in caregiving or cannot be counted upon for support because of a problem in their own lives, such as addiction or disease.
If your aging parent selected you as his or her primary caregiver, you may find yourself in the position of needing to protect your parent—and yourself—from abusive, avaricious, or deceitful siblings. There are steps you can take to help your parent prevent his or her health and finances from being negatively impacted by the behavior of unscrupulous or misguided family members.
Too often, families postpone having crucial conversations about the "what ifs" of illness, old age, and death, and planning a course of action that covers the possibilities, until they're faced with a sudden acute need. Life can be clipping along at its usual pace, and then, out of the blue, an emergency call comes in. A senior parent has been rushed to the emergency room for a life-saving operation, or has fallen and broken a hip, or there's been a diagnosis of Alzheimer's disease. Now the children have to respond. But what should be done? Where are the financial records? Who has access to the bank accounts? What is the right medical treatment? Where is the parent going to live after this? How much support is needed and who is available to offer it? In an emergency, all of this confusion can be going on at the same time family members are feeling flooded by emotions like fear, sadness, and even anger because their lives are being disrupted.
One of the greatest tragedies can be when a family is not prepared and its members disagree about who should be in control of money, medicine, and care. Especially when relationships in a family are already rocky, an emergency could just be the beginning of a series of conflicts that arise over the steps that should be taken in the care of senior parents. Hurt feelings and fighting can be avoided if siblings and parents hold in-depth family conferences well before an emergency.
Even when siblings are not at odds, caregiving usually comes to rest on the shoulders of one person more than any other. Being a primary caregiver adds stress to your life. In this book, I'll cover what you can do to take good care of yourself if you are playing this important role.
Due to the pain of my experiences as a family caregiver at odds with her siblings, I am a strong believer that children and parents must talk early and often about issues related to aging and dying. It is best if everyone within the circle of an immediate family clearly understands each other's wishes and plans, even if some are not going to play an active role in caregiving. These conversations are essential for family members to become good partners for each other and strong advocates for each others' wishes when the end of life is approaching.
Baby Boomers really need to set their own affairs in order, as much as help their elderly parents handle theirs, particularly if parents are in some manner dependent upon the children. Just as young parents make decisions to protect their minor children, adult children should make provisions to protect their elderly parents in case something happens and the children are no longer around. Odds are that the older person will die first; but sometimes the younger one does. We Baby Boomers are not tender spring chickens. We're more like tough, old birds ourselves.
Once the necessary legal documents have been put in place, you and your siblings can get on with the important work of caregiving and, ultimately, saying goodbye to your parent. Preparation gives you room to grieve and a chance to come together for mutual solace and the celebration of your parent's life. Though the crucial conversations may feel uncomfortable, when your parent's death is near you'll be glad you had them, did the paperwork, and hopefully found a way to resolve past upsets, as this will free your energy for the beautiful emotional aspects of the experience, like giving and receiving love. In the end, love is the true essence and gift of a family united by a common purpose.
****
When You Parent Can
No Longer Live Alone
My father lived with his second wife until she passed away in 1998. Before his retirement, he ran a ministry in the small, rural town of Lamar, Colorado, which is located 200 miles east of Denver and has a population of 8,000 people. The church ended when he stopped working. After his wife's death, he lived a quiet life and fell out of touch with the people in his community. We were in frequent contact, but I didn't know anything was wrong until one day when he called me very upset.
"Carolyn," he requested, "can you come help me?" Someone had run into the back of Dad's car, wrecking it, and he didn't know what to do. He needed to buy a new car and couldn't handle the insurance paperwork on his own. Though he wasn't physically injured, he was emotionally frazzled and overwhelmed. I flew out and took charge.
A few months later, I got another similar call from Dad. He'd accidentally left a hose on and water had flooded his basement. He needed assistance in coping with the steps of making a homeowner's insurance claim. Again, I did the paperwork for him.
Before Dad moved to California to live with me, I traveled the country regularly for my job as a clinical education manager in the pharmaceutical industry. This allowed me frequent opportunities to visit him at his home in Colorado. When I discovered on these visits that he was losing weight, seemed depressed, and clearly was not his usual self, I knew it was time for me to become more involved. I suggested he come live with me. He didn't agree immediately.
The period in which I was taking care of my father from a distance was tough on me. I didn't realize it, but my role in my father's life was being transformed. Because Dad was losing weight, I brought him to see a doctor. The moment when the doctor praised me, saying, "It's so good you're his caregiver," was the moment I became conscious that I was a caregiver.
After a couple of years of flying back and forth to Colorado frequently, in 2000 Dad finally agreed to move into my home. I got a call from him when I was literally on my way to Florida for a national meeting of my company's sales managers. I phoned my boss and told her I would be late because I had to pick Dad up, and then diverted myself to Colorado. Dad had a tiny suitcase packed. He was ready to go as soon as I arrived. We flew together to California, where I got him settled in my home, and then I hopped on another flight to Florida.
A few weeks later, I flew back to Colorado once again, removed Dad's furniture and cleaned the house with the help of one of my brothers, went to see a realtor, and put Dad's house on the market. It sold six months later. Dad's transition to living in my home was complete.
The First Decision: Selection of a Primary Caregiver
The typical profile of a family caregiver in our society, after a spouse, is a grown daughter in her midlife who views caregiving as her social role. But family caregivers may be people of any age and gender. Grown sons often fall into this role if they are the sibling in their family living closest to the parent. And, of course, only children have no siblings with whom to share the responsibility. For different reasons, caregivers are the children who answer the call.
Being a primary caregiver is a huge responsibility. Law-Glossary.com defines a caregiver as the "person who is primarily responsible for looking after someone's health, safety and comfort." When speaking about aging adults, a primary caregiver steps in only when someone cannot fully care for himself or herself. A primary caregiver may be a selected family member, a medical professional in a care facility, or a trained professional living outside the home. In this book, we're focusing only on the grown children who assume this role on behalf of their parents.
For a period of time, caregiving can be offered to a parent from a distance while the parent remains in place in his or her own home. After a while, the parent's needs may increase to the point where living independently is problematic. Perhaps falls are periodically taking place or meals are being missed. Then other options will need to be considered and action taken.
When is the right time to make the decision to move an elderly parent into the home of a family member or an assisted-living environment? When the parent is no longer able to care for him or herself and live independently. Gauging whether or not the move into your home is appropriate depends on the level of care the parent needs, and what you are capable of handling. When it is evident that an elderly parent is at risk of harm unless they have twenty-four-hour help in meeting their everyday needs, then home care may be the right choice.
In my own situation, for instance, it was easier on me to have my elderly father living in my home than continuously having to travel to another state to care for him, as this caused less disruption to my life and livelihood. When an elderly parent lives with an offspring it can give the whole family peace of mind knowing that the parent is in a safe place with a loved one.
When you choose to provide care for an elderly parent in your own home, it is an act of unconditional love and loyalty that money cannot buy. No amount could compensate for the hard work involved in undertaking this responsibility when the care you give a parent is based upon the right motivations. No hired caregiver, no matter how well trained, could ever love your parent as much as you do. Your family truly needs to understand the significance of selecting the right caregiver, and the level of dedication that family caregiving demands.
Family discussions about future options for a parent's care should cover the important topic of selecting the right caregiver and putting the legal paperwork in place that solidifies the choice, as well as conversations on how to support the person taking on the responsibility. The selection should be based on qualifications and temperament, rather than on emotion. A child probably should not be selected when the individual does not have a peaceful relationship with the parent, is struggling financially, or behaves irresponsibly. Not if there is another option available.
Documenting the choice of a caregiver is essential, for reasons we'll explore in a later chapter. The courts are bulging with family disputes about parental care and the distribution of parental assets after death, when nothing has been established officially in writing. This is when the chances are greater for fights among siblings to erupt over the care of a parent. In the case of my family, I was appointed primary caregiver by my dad in his healthier years, and my siblings accepted this fact. However, we had put nothing about our arrangement in writing. If the decision is not put in writing, it does not exist in a court of law.
Fights do not necessarily mean siblings genuinely care about their parents' needs and wishes. In many cases, such legal battles are about financial gain. Sometimes they erupt over what siblings think they're entitled to, and how they want to "get onboard the gravy train" when they think a parent is dying.
If this sounds harsh, remember that my goal is to educate you on how to protect aging parents and their primary family caregivers. My focus is on how to make the end of your parent's life as peaceful as possible for everyone involved. My strong desire is that you and your siblings will pull together as a team when the time comes to care for a parent who requires assistance.
Making Caregiving a Family Affair
It is in the best interest of siblings to pull together as a team when there's a need to care for a chronically ill or dying parent. How different family members step in at such a time to offer assistance to the parent depends on the relationship dynamics of the family. Ultimately your role in your parent's care depends on many factors, not the least of which is your willingness to be involved, and whether or not your parent is competent to make decisions and desires your participation.
Here are some other considerations:
Is the parent married or single?
Are you an only child or do you have siblings?
Are you and/or your siblings capable of handling the needs of the situation? Do you live close by? Do you have the knowledge or training required? Do you have the physical and emotional stamina required? Do you have the temperament and inclination to play this role?
Do you have the financial resources required? Do you have the availability required?
Do you get along with your parent?
Do you get along with your parent's spouse?
Do you and your siblings get along?
Families come in all shapes and sizes. Every family has its own relationship dynamics; its own values to confer; its own capabilities to rely upon; and its own medical, financial, and legal circumstances to contend with. For the purpose of this discussion of team-building, I'm making two fundamental assumptions: first, you've chosen to be involved in your parent's end-of-life planning and care, if that is needed and appropriate; second, you have your parent's best interests at heart.
To be clear, throughout this book I am particularly addressing the concerns of adult children, rather than the concerns of caregiver spouses, although the two areas of focus often overlap in the real world. Here, I am specifically covering the topic of sibling relationships, because only children will experience neither the potential benefits of sibling partnerships, nor the potential obstacles that are the outcome of sibling disagreements. If you are an only child and a caregiver, please be aware that you and your parent also need to prepare and that you will need support.