Your Retirement: Dream or Disaster?

PREFACE

I took a deep breath as the production assistant attached the lavalier microphone to my lapel. Technicians were scurrying around in a last-minute frenzy, making final adjustments to the set of Master Your Future with Rajiv Nagaich, my first public television special.

Five minutes to showtime.

The lights were blinding, but I managed to make out familiar faces in the studio audience, more than a few of whom were my clients. One caught my eye, giving me a thumbs up. Good luck, Rajiv! she said with a smile.

One minute to showtime.

I was ready.

Everything in my life had led to this moment. I could see the entire journey in fast motion in my mind’s eye: the triumphs, the tragedies, the missteps, and the victories on the road to changing the way Americans plan for and navigate their retirement years. Memories were swirling in my head, all converging at this moment.

The most important memory of all in this pre-shoot reverie was of the two people who started it all: my in-laws, Bill and Vivian Wallace. Who could have guessed that my path would have intersected with theirs? What were the odds?

Meeting Bill and Vivian changed my life forever. I loved them both more than words could say. Their lives ended very differently. Bill took his last breath alone in a nursing home room, his head on an institutional pillow; the whole of his being reduced to a name on a chart. Despite my family’s best efforts to give Bill a different ending, we were swimming upstream against a current we couldn’t see, caught in a dysfunctional long-term care system that warehouses frail older adults and calls it progress.

The injustice enraged me. The rage motivated me. I was determined to understand why Bill’s life had ended the way it did. I had to do something to prevent other older adults from suffering the same fate. It was the least I could do for Bill.

By the time Vivian’s time had come, I had learned a great deal about this invisible system and how to navigate it. Thanks to years of unwavering support from the Wallace daughters and their families, Vivian’s last days were spent in her own bed, surrounded by her children and grandchildren, her head on her own pillow in the place she called home.

Before Bill and Vivian Wallace, I was just another kid from India who came to America to seek out his fortune. Bill’s tragic situation opened my eyes to a reality I didn’t anticipate in a place I didn’t expect to confront it: the richest country in the world. What happened to Bill, and what happens to millions of middle-class Americans just like him, was a reality I couldn’t unsee. It was a reality no one was talking about.

My intention was never to go to battle. The battle came to me. So, I did what people do in battle—I started fighting. First, I fought for Bill Wallace, and then I fought for every frail, sick, and frightened person who came to my elder law firm for help. In the process, I discovered the ridiculousness of a broken system that fails families at every turn.

Why were so many people ending up like Bill?

Why didn’t anyone seem to notice … or care?

How could I make things better for them?

I have dedicated my life to answering these questions, and this is my story.

INTRODUCTION

What are your biggest hopes and dreams for your retirement years? I’ve asked a variation of this question thousands of times—on stage at seminars, on camera at webinars, on the radio, and on television.

Most of us have a good idea about the things we want from retirement. Almost everyone can articulate their hopes and dreams. The people I interact with on this question seldom have trouble painting a vivid picture of how they want life to be. They raise their hands and articulate their ideas like eager children in a classroom, thrilled because they know the right answers. Answers like travel, new hobbies, time with family, and adventures always end up on the list. I can see the excitement in their eyes.

While I love hearing about the fun things people plan to do with their retirement years, that’s not what interests me most. Their excitement isn’t the reason they signed up to hear me speak.

They signed up because they were afraid.

Would you attend a retirement planning lecture because you’re confident? No. You show up because, like millions of other people, you have doubts. There’s a niggling fear that you can’t quite articulate; there’s an anxiety you can’t quite shake.

Anxiety about the retirement years is what motivates people to listen to what I have to say.

After everyone has listed the exciting who, what, and where of their plans for their retirement years, I pivot to the real reason people came to hear me.

I want to know what they fear most about retirement. This is where the conversation gets real.

The things we hope to avoid in retirement don’t get talked about very often. Almost no one focuses on what we want to avoid, because doing so means confronting realities that most Americans would rather not talk about—things like declining health, loss of control, frailty, and death.

So, when I ask this question—What do you fear most about retirement?—there is usually a long pause before anyone is brave enough to answer.

However, after the first courageous person speaks up, the floodgates usually open.

So now I ask you, the reader, what do you fear most?

Over the last two decades, tens of thousands of people in my seminars, webinars, and workshops have answered this question.

Their answers boil down to three things:

They are terrified they will end up in a nursing home.

They are afraid they will outlive their money.

They are afraid they will be a burden on their family.

Do you have these fears?

Should you be afraid?

Researchers say the answer is yes.

Though most Americans hope to be able to live out their lives in their own home, the reality is that less than 30 percent will be able to do so.¹ There’s a 70 percent chance that you will not be at home when you are taking your last breath. You will likely be in a care facility, a place almost no one wants to end up. There’s a 69 percent chance that when you fall ill you will become a burden on your family,² something nearly everyone wants to avoid. And lastly, many people who deal with incapacity will have reason to worry about losing their hard-earned assets to uncovered long-term care costs,³ an outcome no one wants.

How can so many Americans be experiencing such dismal results? And, more importantly, why is there a deafening silence when it comes to planning around these issues?

That’s the question I will be answering in this book. The way we define success in retirement is largely based on a marketing bait-and-switch scheme. The photoshopped images of older people living the dream as often depicted in glossy retirement planning brochures don’t paint an honest or realistic picture.

Where are the brochures selling retirement dreams that include older adults in the throes of cognitive decline who have set fire to their house yet again, lost thousands of dollars to scam artists, or have taken a wrong turn on their way to the grocery store? Where are the photoshopped images of older adults learning to walk again in rehab after suffering a stroke? Where are the promotional images of older adults whose needs are consuming the lives of their family members?

You won’t see those images because that’s not what retirement planning is about in this country. Retirement planning the way it’s done today is based on the false notion that your later years will unfold in one gleeful, adventure-filled phase. The retirement dream is that you will live a healthy and active life until you die in your sleep.

Unfortunately, that is only a dream for most of us. Most of us will spend some (possibly many) of our retirement years dealing with health problems that gradually increase our dependence on others.

Yes, a few people will go out with a bang. They will be the lucky ones. For the rest of us, retirement will be a long, slow, downward skid toward an undignified end.

Broke. A burden. Stuck in a nursing home. All of these outcomes can be avoided with proper planning.

That’s what makes today’s approach to retirement planning such a tragedy. We aren’t planning for the reality of sickness and frailty, yet most of us will experience these things. If success in retirement is pitched as having the money to live your best life when you’re healthy, shouldn’t that best life include the years you spend in failing health? Wouldn’t you want to have control over where you live, how your affairs are managed, how your money is used, and how your needs impact the lives of your loved ones even as your independence is waning?

If your retirement plan is successful, you should be able to live where you choose until the moment you take your last breath, even if your health fails, without being forced to move to an institutional care setting like a nursing home. You should be able to protect your nest egg from unplanned long-term care costs, so you don’t end up broke. You should be able to grow old without becoming a burden on your family, or a source of conflict and disorder among your family members.

If you can nail those three things, you’ve grabbed the brass ring.

Why will so few of us accomplish this?

The moment you lose your health, your retirement dreams will turn into retirement nightmares. There is no escaping it. You can’t wish it away. You can’t talk it away.

This is the reason people come to my seminars, webinars, and workshops. This is the reason people choose to work with me—to develop a plan to avoid the negative outcomes that traditional planning fails to address.

It’s not that we don’t plan for life in retirement. Americans do more planning than just about anyone else, yet most of us are unable to achieve our basic retirement wishes.

The traditionally accepted planning formula for retirement success is focused on money. Conventional wisdom says that if you have a paid-for home and a hefty nest egg by the time retirement rolls around, you should be okay. Social Security will provide additional monthly income. Maybe you even have a long-term care insurance policy to foot the bill for future long-term care costs. Other than possibly moving to a sunny climate, most Americans don’t do any special planning for their housing in retirement. More than three-quarters of Americans plan to age in their own homes.⁴ Planning for health care in retirement focuses around enrolling in Medicare and possibly getting a supplemental policy. Legal planning for retirement means getting estate planning documents such as Wills, Trusts, Powers of Attorney, and Advance Directives.

You have a financial plan. You have an estate plan. You have Medicare.

Will this planning keep you from being forced into a nursing home, going broke, or becoming a burden when your health fails?

Probably not.

In the coming chapters, I will show you why this happens to millions of people who thought they had a solid plan for retirement.

This book is written for anyone with retirement on their mind, whether they’re thinking of their own retirement or that of a loved one. Though I cite research and statistics, this is not a lofty academic work. My goal is to present the realities of retirement planning using language that anyone can understand.

Part 1 of this book begins with a personal story. You’ll read about my journey of my expanding awareness and increasing horror as I searched for the root cause of a retirement plan failure that hit close to home. You will read my analysis of the problems inherent in our nation’s retirement planning system, a carefully hidden but very real American disgrace. Along the way, you will learn my story and the stories of the thousands of clients I’ve worked with over the years. You will discover, as I did, that there is a little-known yet immensely powerful disconnect between the goals you have for your life as you age and the goals professionals in the retirement planning industry have for their clients.

In Part 2, I suggest a radically different way to think about retirement planning that empowers you to harness what is good in the American system so it works for you, while taking control of the planning process (and the professionals you trust to guide you) in a way you never dreamed possible.

The book closes with a list of resources you can use to create a better plan for your retirement, one that gives you a fighting chance of living out your years on your own terms, with dignity and independence.

PART 1:

WHY RETIREMENT

PLANS DON’T WORK

THE STORY OF BILL AND VIVIAN

Beginnings

Why is a guy who was born in India talking about the way Americans plan for retirement?

Before I answer that question, let me tell you a little bit about myself. I was born in the plains of India, southwest of New Delhi. My family lived together with my uncle’s family and my grandparents in a large compound that was a lot like sharing space in a big hotel. This living arrangement—called the joint family system, where several families live together in separate wings of a large home—is common in India. Thanks to the joint family system, I grew up in the same household as my aunts, uncles, cousins, and grandparents. It was noisy and chaotic, and it was home.

I came to America in 1982 to attend college. Like just about every person not born in this country, I had a vision of what life was like here. I thought the streets were paved with gold. The only ingredients necessary for success in America were hard work, perseverance, and a desire to play by the rules.

As far as I’m concerned, America has certainly lived up to its reputation as the land of opportunity. You’ll get no complaints from me. I have had my share of both setbacks and successes. What I didn’t realize was that I also had expectations of America being great in ways it turned out not to be.

One of the biggest surprises involved how Americans handle the care of their oldest and most vulnerable. In the U.S., long-term care facilities are everywhere. They go by a variety of names—nursing homes, rehabilitation centers, assisted living facilities, and memory care communities are just a few—but they all have one thing in common: they are all institutions.

Where I grew up, there were no old people living in institutions. There were no long-term care facilities, nursing homes, or memory care communities that I was aware of. Elderly relatives lived with their extended family until they died.

How did I become aware of this profound difference? It happened many years after I came to America. That’s when I encountered the people who would change the course of my life. I tell the story of this family—the story of Bill and Vivian Wallace—at every seminar, webinar, and workshop I conduct.

Bill and Vivian – The Early Years

The story of Bill and Vivian began long before I entered their lives. Bill Wallace was born in Colbert, Washington, a small town north of Spokane. Bill met Vivian Clark while she was attending a nurses’ training program in Spokane. Like many young men of his generation, Bill decided to serve his country, enlisting in the Air Force.

After a whirlwind courtship, it was time for Bill to go to pilot training. From the nurses’ station of the downtown hospital, Vivian heard the whistle blow as Bill’s train left Spokane, and she knew she was in love.

Bill’s stint in the service didn’t last long. During basic training, Bill learned that he had a horseshoe-shaped kidney. Bill was medically discharged from the Air Force, and he hurried back to Spokane to marry Vivian.

The day after their wedding, they left for Petersburg, Alaska. Vivian worked as a registered nurse in a ten-bed, one-doctor hospital while Bill worked as a fisherman. Three of their five children—Pam, Jan, and Rondy—were born during the time the couple lived in Alaska.

After ten years in Alaska, Bill and Vivian decided to move back to Spokane to raise their family. They paid cash for their first home, a small two-bedroom, one-bathroom house on a spacious lot on Sullivan Street surrounded by meadows in the valley outside Spokane. Bill got a job as a mail carrier working for the U.S. Postal Service, while Vivian remained employed as a nurse.

Soon, two more girls were added to the Wallace family: Sherry and Jamie. A one-bathroom home soon became too small for their growing family. Bill and Vivian did what most parents would do: they moved their family to a larger home. Their new place was situated on a five-acre parcel of land about a mile away on Broadway Road.

Bill, Vivian, and their five daughters lived comfortably, navigating life’s ups and downs like any normal middle-class family. While the children were young, Bill and Vivian focused on giving them a proper education. It was only when their youngest, Jamie, left for college that they started thinking ahead to retirement.

Like many Americans of their generation, Bill and Vivian built their plans for retirement around a simple notion: if they had their house paid for and a few hundred thousand dollars in the bank, surely between Social Security, Medicare, and a debt-free lifestyle, they should be able to lead a comfortable retirement. They planned on exploring America by RV after Bill retired. Their retirement dreams were set.

The Diagnosis

Unfortunately, the RV never left the driveway. Most of their retirement dreams were never realized because Bill was diagnosed with Alzheimer’s disease during the last year of his work life.

Vivian spent the next few years keeping Bill’s diagnosis a secret from all but one of their five daughters, Jan, who also lived in Spokane. Vivian didn’t want to burden the other daughters, but her burdens were only just beginning. As the disease progressed, there were many days when Bill didn’t recognize Vivian.

Who are you? Bill would ask. Where is my wife?

As these symptoms occurred more frequently, Vivian realized that she could no longer meet Bill’s needs while managing a five-acre mini ranch with crops like hay and corn, and a menagerie of chickens, peacocks, dogs, and other animals to care for.

When Vivian finally opened up to her daughters about the situation, the girls came together in Spokane to discuss the issue. Vivian had an important decision to make. Should she and Bill continue living in the house they had called home for so many years? If she stayed there, Bill would need to be moved to a nursing home. If she wanted to keep Bill out of the nursing home, she would need to downsize to a smaller home so she could focus her energies on caring for him.

Vivian decided to downsize. It was worth it to help Bill avoid the nursing home.

Their five-acre homestead sold quickly, and Vivian bought a small house on the Spokane River that required far less upkeep. For the few maintenance tasks that remained, things like lawn mowing, landscaping, and repairs, Vivian hired a local service and received help from her family in Spokane. Free from the burdens of maintaining a home, she focused on caring for her husband.

Within just a few days of moving into their new home, however, the flaws in their plan became evident. Bill’s condition had deteriorated to the point where he was no longer recognizing Vivian most days. Bill wasn’t recognizing his home, either, since he had been uprooted from the surroundings he knew. Almost immediately, Bill started wandering, looking for his wife and his home. Vivian ended up calling 911 on several occasions.

Despite the challenges, Vivian was determined to keep Bill at home. It wasn’t easy, but she managed it for several years.

One night, Bill woke up. He didn’t recognize Vivian. Thinking she was an intruder, he started to choke her. Thankfully, their daughter, Sherry, was home to help that night. Awakened from the guest bedroom by the commotion, she called 911 and was able to help Vivian break away.

After explaining the situation to the police, Vivian was able to avoid having Bill arrested on assault charges. The police officers agreed to transport Bill to the psychiatric ward for evaluation.

The next morning, Vivian called their family doctor and asked for help.

You’re a nurse and you already know the answer, the doctor told Vivian. There’s only one solution and that’s to put Bill in a nursing home.

Vivian’s long quest to keep Bill at home was over. She had lost the battle.

She would also lose the war, but we wouldn’t discover that until much later.

These weren’t easy times for the Wallace family. Bill was in a nursing home, and Vivian was lost. Without her daughters, especially Jan, who lived in Spokane, Vivian wouldn’t have been able to face each new day.

It is around this time that I enter the story. The way I came to be in Bill and Vivian’s lives was through Jamie, their youngest daughter. I was working for Allstate Insurance Company as a sales manager, and Jamie was an Allstate client. She had totaled her car in an accident and the claim was not going her way. Jamie’s Allstate agent had just retired, so her file landed on my desk. The year was 1989.

Where are you from? Jamie asked during one of our phone conversations.

I’m from India, I replied.

I thought that might be the case, Jamie said. I have an in-law from India. I recognize the accent.

Her comment opened the door to a personal conversation, and then another, and another. After the claim was settled, I asked Jamie to marry me. She surprised me when she said yes.

Welcome to the Family … and the Nursing Home

Jamie wanted me to meet her family. We left Seattle on a Friday evening and stayed with her mother when we arrived in Spokane. On Saturday, I met Jamie’s sister and her sister’s family. On Sunday, as we were getting ready to drive back to Seattle, Jamie asked if we could stop at the nursing home so she could see her dad. By now, I knew that Bill had Alzheimer’s, though I had only a vague idea of what that was. I knew her dad was living in a nursing home, a concept I knew nothing about. As I mentioned earlier, there were no nursing homes in India, at least not like they exist here in the U.S. In India, the term nursing home refers to a place for a short-term stay after a surgery or health event. It’s a place you’ll come home from after a few days or weeks, not a place you’ll stay forever.

I’ll never forget what happened that day. As we entered the nursing home, all I could see were elderly people unable to care for themselves.

It was like a junkyard for old people who were no longer functional, like discarded cars too old to run on the road. We passed this spectacle as we made our way to Bill’s room.

When we walked in, Bill recognized Jamie immediately. Although he had lost his ability to speak, he burst into the biggest of grins. Jamie was both happy and heartbroken to see her dad in this setting.

It was difficult for me to watch.

We spent two awkward hours in the nursing home interacting with Bill. When we were ready to leave, Jamie gave her dad a hug and told him she would be back. Thinking Jamie was taking him home, Bill clung to her arm and started walking to the door with her. He didn’t let go.

Jamie started to cry. A nursing home employee saw what was happening and came from behind to tap Bill on his shoulder. Bill was distracted long enough for us to enter the key code to unlock the door, leaving Bill behind.

This was a traumatic experience for Jamie, and a surreal experience for me. For the first time, after so many years in America, I asked myself, how can the richest country in the entire world take care of their old people this way when they can no longer care for themselves?

This was a logical question for me, a person observing the situation through third-world eyes. At home in India, I had seen all four of my grandparents take their last breaths with their heads laying on their own pillows in their own homes, surrounded by their loved ones. All were dealing with incapacity in one form or another, yet there was never any question about whether they would be cared for in the home they knew and loved. They didn’t have to worry about being sent to a long-term care facility. Not once did I hear my relatives fret about how they would manage.

Surely this wasn’t the best America could do.

Or was it?

Bill and Vivian Relocate

Jamie and I married on July 22, 1995. Bill did not walk Jamie down the aisle. Shortly after the wedding, we invited Vivian to move out of her home in Spokane and come live with us. She hemmed and hawed for about six months.

We kept asking. She kept putting us off.

One day the truth came out. I don’t want to be a burden, Vivian admitted.

I started laughing. Burden? I said, What kind of burden are you talking about? I grew up with sixteen people in the same house. There’s not enough of you to make it a burden for me.

Finally, she agreed to move in with us.

After Vivian was settled, we set about relocating Bill to a nursing home in the Seattle area. Though there were four nursing homes within five minutes of our home in Federal Way, we elected to place Bill in a facility eleven miles away in the town of Des Moines.

Why didn’t we choose a facility closer to home? Each nursing home had a shiny brochure, glowing references, and five-star ratings. Our decision boiled down to one very simple and highly scientific approach: the smell test. The nursing home in Des Moines appeared to be cleaner and better maintained than those we visited in Federal Way. It was the best of all the nursing homes we visited.

Once Bill was settled into his new home, I visited him every day. By this time, he had lost the ability to walk and was confined to his bed and his wheelchair.

The more time I spent with Bill, the more I wondered, and the more questions I had. Why was Bill in a nursing home? He wasn’t a threat to himself or anyone else.

The answer: Bill was incontinent and nonambulatory. He needed care.

Really? Millions of people in other parts of the world suffered the same issues, and they weren’t forced to move into nursing homes. In fact, four-fifths of the world’s population lives in either second- or third-world countries, places where there are no long-term care facilities. Just because somebody becomes incontinent and is no longer able to get around on their own, it doesn’t mean that they can’t receive care at home. This belief that incapacitated older people are better off in institutions seemed to me a uniquely American phenomenon.

If people in other countries could care for their incapacitated loved ones at home, why would Americans believe that it was beyond the ability of family members or noninstitutional care staff to address these issues at home? What was so different about Bill’s situation? What was so different about growing old in America?

Keep in mind that I was approaching this situation from the perspective of a person who grew up in India. I already knew that there was nothing extraordinary about how we grow old in America. The years accumulate for us in the same way they accumulate for every other human being in the world. People grow sick and frail as they age.

The difference isn’t in how we age, but rather in how we meet the needs of those who are aging. The difference is in how America deals with people affected by the sickness and frailty of old age. Americans seem quite comfortable warehousing their elderly population in long-term care facilities.

I didn’t want it to be this way for Bill. It wouldn’t be this way for my parents, and this isn’t what I wanted for my father-in-law, so Jamie and I decided to look into bringing Bill back home to live with us.

An Unwelcome Discovery

Once Bill was placed in the nursing home in Spokane, Vivian paid for his care out of pocket, unaware that there was any other way to foot the bill. In the long-term care world, paying out of pocket is called private pay.

When their money was gone, someone in the nursing home suggested to Vivian that she should now consider qualifying Bill for Medicaid benefits. Left with little more than the value of their small home in Spokane, Bill easily qualified for the program. Though I didn’t know it at the time, Vivian had inquired about Medicaid earlier, but had been told that they were too rich to qualify. Once Medicaid benefits started, the government paid about $5,500 every month to the nursing home in Des Moines.

Surely $5,500 per month had to be more than enough to pay for Bill’s care at home.

I started looking into the cost of home care and discovered that the amount you pay depends on the amount of help you get. In a nursing home, you’re paying for round-the-clock care. In reality, most people don’t need that much care, nor do they get it, even in a nursing home.

Between Jamie, Vivian, and me, we were three adults who could help Bill if he lived at home. We also had Jamie’s sister Jan and her husband, who were willing to come to Seattle to help. As I figured it, we wouldn’t need all that much assistance. We could hire professional caregivers to help us get Bill up in the morning, take him to the shower, and get him ready for the day. After that, they could go. Another caregiver or two could come back for a few hours in the evening to get Bill ready for bed.

I looked at what kind of care Bill was receiving in the nursing home and calculated how much it would cost to contract care providers to bring that care into our home. My estimates showed that for about half the amount of money our government was paying to keep Bill in the nursing home, we could provide the same care for Bill in our own home.

This was exciting news. I figured we would just call Medicaid and tell them what we wanted to do. We’re going to save you money and take Bill back home, I would tell them. This would be the first time anyone had called Medicaid with this proposition, and I assumed they would be delighted to hear it.

However, when we brought the idea to the social worker serving as our Medicaid liaison at the nursing home, we were informed that the program Bill was on allowed him to access care only in a nursing home setting. If we took him back home, we would have to pay for any care he needed out of our own pocket.

I couldn’t believe it. Surely this wasn’t the way the most progressive country in the world functions. Was I understanding this correctly? We, as a society, were willing to pay twice as much to keep a man in a place he didn’t want to be, a place he didn’t need to be since our family wanted to bring him home. We, as a society, were willing to pay double what was necessary, just to follow Medicaid’s rules.

This didn’t make any sense, so I decided to look for legal help. Maybe a lawyer could explain things.

I found a law firm and made an appointment. The attorney I selected divided his time between serving as a part-time judge in a local municipal court and private practice with his son and daughter. I felt certain that a judge in private practice would have the answers we needed.

The attorney listened closely as I shared my story. Rajiv, I know what Medicaid is, he said, but I have not a clue how to get Medicaid to bring your dad back home.

No one could explain why. No one seemed to care.

This is what sent me to law school in 1999. I knew there was something terribly wrong.

I’ll tell you that story soon.

For now, let’s fast forward to May 2001, my second year in law school.

I was almost finished with my last final exam when the cell phone in my pocket began to buzz. I glanced at the caller ID to see that it was my wife, Jamie.

I took the call. They say Dad won’t live through the night, she whispered, her voice wavering. You’d better come.

After the exam, I headed to the nursing home. I couldn’t help but reflect on everything that had happened. Like most middle-class Americans, Bill and Vivian probably had visions of a long and pleasant retirement. Their plans did not include being forced into a nursing home, running out of financial resources, or being a burden on others.

I arrived at the nursing home to find Vivian, Jamie, and our two little ones gathered around Bill’s bed. After sitting with them for a while, I suggested they go home to get some rest. I told them that I would stay with Bill.

I sat with him all night. When morning came, the nurse encouraged me to go home and rest as well. I left with plans to take a quick shower and then come right back.

Bill took his last breath soon after, alone in the nursing home. He died before I could return.

Vivian lived with us for another six years after Bill’s passing. She died of a form of kidney cancer that had metastasized to her bones. If you’ve been around anyone who has suffered from bone cancer, you already know that Vivian faced incapacity issues that would have likely warranted institutional care. She was incontinent. She was nonambulatory. She was unable to care for herself. Vivian was a poster child example of a human being who, under America’s long-term care system, should have spent six months or more in a long-term care facility.

She didn’t. That’s not what we wanted for Vivian. The extended Wallace family made it possible for Vivian to stay in the home she knew and loved. For several years, Jamie’s sister, Jan, and her husband spent time in our home to give Jamie and me a break from our caregiving duties. Jamie’s sister, Rondy, transported Vivian to every cancer treatment and medical appointment. Jamie’s sister, Sherry, traveled from Canada to help as often as she could. This loving care made it possible for Vivian to draw her last breath on the same pillow she had always slept on, surrounded by her loved ones. The amazing part of Vivian’s story is not that she was able to die at home. It’s that not for a single day did we look to Medicaid for assistance.

Bill and Vivian had planned for their retirement exactly as they were told, yet their lives ended very differently.

There Has to Be a Way

As I would soon discover, Bill’s story wasn’t unusual. From Bill being moved to a nursing home despite Vivian’s willingness and desire to care for him, to the complete annihilation of their combined net worth, the commonness of this story was what I found so appalling.

I knew that I was witnessing a catastrophic breakdown of some kind. Bill’s plan for his retirement had failed in some fundamental way, that much I knew.

What I didn’t know at the time was that what happened to Bill happens to 70 percent of older Americans. I wouldn’t discover that until much later.

One of the worst parts was that the professionals we were told to trust seemed unable to help. Nobody had answers—not the financial planners, not the doctors, not the lawyers—and nobody seemed to know what to do. Though each professional wanted to do right by us, in the end, the advice they provided was just one piece of a big puzzle that no one seemed to know how to solve. In the end, every professional did their job exactly as they were trained to do, yet the outcome for our family (and millions of others, I would soon discover) was tragic.

I simply refused to believe that we were living in an America with rules that punished our family for wanting to do the right thing by Bill. I refused to believe that I lived in a country that was okay with charging taxpayers double the costs for care that our family didn’t want in the first place.

What could I do to change things?

At that time, before law school, I was still a manager at Allstate Insurance Company, and I met with an estate planning attorney my company used to provide training programs to our agents.

I explained what had happened with Bill. People are being forced into nursing homes when they would be better off staying at home, I said. We could create a training program that teaches people how to keep their loved ones at home. I could offer a non-lawyer’s perspective, and you could offer the attorney’s perspective. We could work together.

Oh, I could never do that, he said flatly.

Why not?

Because the ethical rules of professional conduct prohibit me from working with any non-lawyer.

His unwillingness to help was disappointing, but it didn’t discourage me.

I was determined to help people in Bill’s shoes find better answers, but how would I do that without legal training?

And then it hit me.

Why not go