CHAPTER TWO

Recognizing the Negative Consequences of Silence

I didn’t know what was going on in my body.

I just felt like a lot of weird things were going on that I couldn’t explain.

It was kind of like a free fall where you feel like a kid who isn’t understood, isn’t heard.

I was confused, scared, didn’t know where to turn. So I decided just to wait it out.

—Richard, focus group participant

Whenever the hospice people would come to visit, I’d turn off the television, wheel Dad into the kitchen, and wait until they left. I figured as long as they didn’t come through that door, we were safe.

—Kim, focus group participant

My great-grandfather, whom I called Grandpa, had a great life and a perfect ending.

Grandpa emigrated from Germany in his early thirties, and after working hard to learn English, he used his considerable woodworking skills to become a master carpenter. While he was often involved in building houses, he was best known for creating simple but elegant dining room tables and chairs.

When I got to know him, he was pushing 90 and living with his daughter and her husband (my grandparents), but he was still able to get around enough to tend to his rose garden.

One thing I really looked forward to was going over to watch the Chicago Cubs games with him. When they lost (which was often), he’d cuss them out with gusto (if Grandma wasn’t around). Ahh, my first taste of male bonding at age eight!

One day in September we watched the Cubs win one and celebrated with a bowl of butter pecan ice cream (his favorite). Mom came to pick me up, and Grandpa headed outside to his rose garden and eventually dozed off. On this particular warm Indian summer afternoon, he didn’t wake up.

Quick, painless, uncomplicated, in a place of his choosing, in a final moment of beauty and serenity.

No muss, no fuss, with a Cubs victory to send him on his way.

The Power of Procrastination and Inertia

Grandpa’s demise came to be known in our family as the “rose garden exit strategy.” Unfortunately, while this story was mildly amusing and, in some ways, comforting, over the years my parents began to firmly (wishfully?) embrace this fantasy of the end of life as their own.

As a result, this mindset allowed them to sweep all the challenges and unpleasantries of old age, and especially death, under the rug. If the subject ever came up with me or my two brothers, Mom and Dad’s pat answer was always, “Everything will turn out just fine, so we don’t need to talk about it.”

What I learned when I began to research this book was that the vast majority of parents turn to that same stoic silence whenever confronted with issues or even questions about the last stage of life.

Through hundreds of conversations with families and eldercare and end-of-life practitioners, a pattern emerged as to how a parent’s natural decline can unleash serious unwanted strains on the entire family relationship. My family’s story demonstrates how the unintended consequences of stoic silence can play out.

Starting Down the Slippery Slope

When my parents reached their late sixties, they decided to sell their home healthcare business and finally retire to their house in the woods overlooking Lake Michigan. Then, to escape Michigan’s harsh, gray winters, they transformed themselves into “snowbirds,” buying a second home near Phoenix.

Life was great for the first couple of years of retirement. Many of Mom and Dad’s friends from the Midwest had also decided to spend the winters in Phoenix, so there was a ready and comfortable group for them to tap into for trips into the desert and up the mountains, as well as cocktail hour at the end of the day. In addition, the recreation center down the street offered a pottery class and a garden club for Mom, and it had an outdoor swimming pool and woodworking shop for Dad.

My brothers and I and our wives and kids would go visit, typically in February, and everybody in the family felt that our parents’ living arrangement seemed very workable. Dad had been diagnosed with multiple sclerosis (MS) 20 years earlier, but he was still getting around on a cane and was able to drive. Mom was as energetic and physically fit as she had always been, and she was able to effectively play the primary caregiver role. And since they had relocated to one of the retirement villages near Phoenix, there were plenty of medical and other support systems at their fingertips.

Then the crisis hit.

For me, it began on a Wednesday in late March. I was just finishing up a presentation of research findings to a group of senior executives in New York when an assistant came into the boardroom from a side door and handed me a note:

Your father’s refusing to get into the ambulance. What do you want to do about it?

To say I was caught by surprise would be an understatement. I looked up at the assistant and indicated that I’d be right there. Once I reached the phone, the crisis began to take shape.

The paramedic said my father had taken a bad fall on the ceramic tile floor in their Spanish-influenced home and likely had fractured his hip but was refusing to go to the hospital. The paramedic described my mother’s condition as frightened and incoherent, not surprising under the circumstances but also not her usual cool, calm, take-charge self.

Fortunately, my brother Doug had planned a trip out to Phoenix with his family and was, in fact, scheduled to arrive the next day. Unable to communicate with Mom, I got Dad on the phone and convinced him that the emergency room was the best place for him to be. Then I hung up the phone and called Doug to forewarn him that his trip out West was not going to be the usual visit.

Doug called me the next afternoon to describe a situation much worse than any of us had imagined. Dad had also fallen at least three other times in the preceding two weeks. Since Mom, at five-foot-three and 105 pounds, couldn’t lift what was essentially dead weight, they called on their neighbor Bill to help get him back up, swearing him to secrecy from the family with “We don’t want to worry them.”

Then Doug discovered that the entire right side of my parents’ Oldsmobile minivan was smashed in, the result of an accident Mom had had in a parking lot three weeks earlier.

Perhaps most depressing, my brother learned from our parents’ doctor that Mom had been diagnosed with Alzheimer’s, a horrendous disease that essentially peels away the brain one layer at a time while leaving the body intact. Dad apparently was going to tell us when they returned to Michigan the next summer.

I hung up the phone and felt a cold, numbing sensation of helplessness. As the afternoon turned into evening, the implications for me, my two brothers, and our families really began to sink in with a vengeance.

The Chilling Reality of Role Reversal

A parent care crisis is particularly devastating because reality hits you on two levels.

Reality number one for me and my two brothers was our total shock and anguish over our parents’ deteriorated condition. Dad’s MS had finally won the battle with his ability to walk so that he would be forever confined to a wheelchair. Equally disturbing, his disease had begun to aggressively attack his cognitive functions, particularly his short-term memory, organizational skills, and attention span. And Mom’s Alzheimer’s was rapidly stealing her ability to communicate. Within three months, she would never utter another coherent sentence.

While their crisis was sudden, their deterioration would be gradual. Mom would live another five years, although in a confused and increasingly frightened and antagonistic condition, and Dad would see another seven years, although in a world that swirled with conspiracies and hallucinations.

Reality number two was the sinking realization that Doug, Tom, and I, as well as our spouses, would be forced into the parental role with no planning, no expertise, inadequate resources, and most important, no direction from our parents.

We discovered that Dad had an investment portfolio that would cover the cost of a stable, healthy retirement scenario, but he had neglected to buy long-term-care insurance to pay for the expense of an extended physical decline of undetermined length. We were forced to quickly confront a series of complex and complicated decisions in the areas of financial planning and management, alternative living arrangements, medical care, and decision making at the very end of their lives.

To make this situation even more overwhelming, the three of us had never discussed any of these issues with our parents, and because of Dad’s declining cognitive skills and Mom’s increasing incoherence, we never would. As a result, we were, as the saying goes, sailing into uncharted waters without a compass.

Challenges Emerge

Clearly, Mom and Dad couldn’t live on their own. But it was also obvious that we couldn’t expect a logical, well-thought-out answer as to where they’d like to live, so we fell back on the only experience we’d had with a relative needing assisted living, which was Mom’s mother.

At age 80, our grandmother decided to sell her two-story flat, where she had lived upstairs and rented out the lower floor. She was beginning to have trouble navigating the steps, and she had grown weary of dealing with renters, getting the house painted, and lining up plumbers, electricians, and yard maintenance.

So Grandma moved into an assisted-living senior center, where she had her own apartment, several dining rooms to choose from, a wide variety of social activities, and an extensive travel program that had her visiting someplace new every four months. In addition, there was an on-site advanced-care facility that she could turn to whenever her health required it.

At her ninetieth birthday party, she leaned over to me at dinner and confided, “I’ve just had the best 10 years of my life. You should try it!”

Using Grandma’s experience as a model made the decision about what to do with Mom and Dad seem obvious: find a place that could replicate Grandma’s experience (Doug offered to take that on in St. Louis, where he lived), and we would be finished.

The signs that this would be an unmitigated disaster began to crop up in the first month. Mom refused to leave their apartment except for meals with Dad, and Dad started getting increasingly aggressive and argumentative with the staff.

It only got worse a few months later when Dad (against doctor’s orders) escaped to a college reunion in Ohio with the help of two fraternity brothers. Of course, he didn’t tell anyone he was going, which after 24 hours resulted in panicky phone calls from the assisted-living facility as to his whereabouts and an escalating frenzy by my late-stage Alzheimer’s mother, who was apparently feeling abandoned in a sea of strangers.

Desperate for a solution, I convened my two brothers and our wives to come up with a plan B, knowing that we couldn’t expect any guidance from our parents in their current mental condition.

It finally dawned on us that our parents had always been a very sociable couple and that many of their friends from the garden club and their church still resided in their small town in Michigan. When we offered to move them back home, their beaming faces and excited body language told us that we were onto something.

But this path was also fraught with risk. We would need to create a reliable assisted-living support system—medically, physically, financially, and socially—in the middle of the woods, miles from their small downtown and nearly an hour from a hospital, with me in Chicago, Tom in D.C., and Doug in St. Louis.

The learning curve was steep, the time to execute was short, and along the way we hit many wrong turns and near disasters. Ultimately, keeping them in their home for the last part of their lives turned out to be the right thing. But that journey would have been so much easier, more direct, and less gut wrenching if we’d had a road map for where to go—and the time to chart how to get there.

Having the Other Talk would have provided us with just the tools we needed.

Battle Lines

The initial shock of reversing roles with our parents was only the beginning. Putting their full faith and confidence in a rose garden exit, Mom and Dad would cause a series of unexpected skirmishes between themselves and us that took a heavy emotional toll.

The Cadillac Moment

Dad had always been a self-sufficient, take-charge kind of guy; as a business owner, he had to be. But in his later years, when his bills started getting paid sporadically and he began running a hundred dollars in overdraft fees every month, I was forced to step in to take over the finances and what little nest egg was left. Not surprisingly, this set off a tug-of-war between the two of us that ran right up to his dying day.

But this battle for control wouldn’t affect just me. I recall what my brothers and I call the “Cadillac moment,” which crystallized how difficult the road ahead would be for all of us.

While Dad had apparently lost touch with the reality of money management, he was nothing if not stubborn and resourceful. I remember one weekend my wife, Pam, and I made the four-hour drive from Chicago to visit the folks. As I pulled into the driveway and opened the garage door, I saw my parents’ van was gone. In its place sat a new Cadillac Eldorado.

When we got in the house, my first question was, “Dad, where’s the van?”

“I traded it in for the Cadillac. I figured your mom and I deserved a little splurge,” he replied with a sly, satisfied look on his face.

“But what did you use for money?” I asked incredulously.

“I cashed in the CDs at the bank.”

As I sank into the old overstuffed couch in the living room, I realized that the loss of the $75,000 in CDs meant that my parents had finally reached insolvency. I sank deeper as it dawned on me that I would now need to inform my two brothers and our wives that we were on the hook for whatever expenses Medicare didn’t cover. Worse yet, I couldn’t tell them how long that financial obligation would last, but I could assure them that the debt was already considerable, due to the large home equity loan that Dad had taken out years ago to cover their overseas travels.

“Nothing Needs to Change”

My wife, Pam, remembers an equally telling anecdote about my mother:

When Tim and I got married, his mom welcomed me into the family like a long-lost daughter. What I really liked about her was the energy and passion that she brought not only to her family but also to her home.

Then, a couple of years ago, Mom started having accidents in the kitchen. Some of her favorite meals were turning out inedible when she mixed up ingredients. More and more of her prized antique glassware was getting broken. And when the fire department had to be called because she had left stove burners on to go watch TV, Tim and I knew it was time to move his parents to an assisted-living facility.

The movers had come in the day before to pack everything up. I kept Mom occupied with an extended shopping excursion and a long lunch at her favorite restaurant.

When I came downstairs the next morning, I found Mom surrounded by empty boxes marked “Kitchen stuff.” All the contents had been put back in their accustomed places.

As I wended my way amid the boxes and piles of crumpled newspaper, she rose up to her full five feet, three inches, and fixed me with an icy stare I had never seen from her before.

“Pamela, dear,” she said quietly but firmly, “Dad and I never agreed to move out of here, and that’s not going to change. Now help me put this house back in order.”

Casualties Along the Way

Our family made a number of mistakes along the way. But what really hurt was the disintegration of the loving, trusting relationship that had bound together the five of us and our extended families for so many years.

Here’s how Tom, the youngest son, saw the crumbling family dynamic:

Mom was always the cheerleader, probably from her days as captain of the cheerleading squad at Northwestern football games. Her single-minded focus was on keeping the men in her life, her three sons and husband, even the dog, with a positive attitude, moving forward.

When Alzheimer’s stripped her of her ability to speak and ultimately created an emotionless old woman, our family lost its catalyst.

The unfortunate consequence was to unleash Dad’s paranoia and antagonism (which I later learned was inflamed by his MS) and cause confusion and resentments among all of us.

In my heart, I kept hoping she would get better, return as our spark plug, save us from the slow disintegration of our family.

Of course, she never did.

Here’s how my brother Doug, the middle son, first experienced the breakdown of the family relationship when he showed up in Arizona the day after my forewarning phone call.

The moment he arrived at our parents’ house, it became clear that their days of living independently in their home were long gone. Our father’s mobility had deteriorated to the point that he was permanently relegated to a wheelchair. More ominous for both of them, our mother’s Alzheimer’s had rendered her dangerous in the kitchen and behind the wheel of her car. The depressing implication of their new reality was that our mother’s role as caregiver and, therefore, guarantor of our parents’ independent status, had come to an end:

I remember sitting with Mom in her kitchen, looking out at her prized grapefruit tree, trying to convince her that everything was going to be all right. As I struggled to come up with the words that would persuade her to give up that grapefruit tree and everything else that went with it so she and Dad could move into assisted living, I realized that we were asking her to stop being an adult.

We were telling her that she and my father were no longer capable of making intelligent decisions, of using good judgment, of managing their own money, of coming and going whenever they pleased, or of living in their own home.

We were telling her that, while she and Dad had done a great job of being an adult for the last 70 years, it was now time for them to be 6 years old again.

Her tears of anger and resentment are an image I’ll never be able to shake.

As the oldest, my initial reaction was to focus on how to keep things together, wrestling with why and how and who would be responsible for the quality of life in my parents’ last years. Yet ultimately, despite a considerable commitment of time and energy to this effort, my relationship with my proud, often stubborn father spiraled steadily downward.

Every time I was forced to take another step toward role reversal as my parents declined, I could sense from my father’s angry words and body language that he saw it all as a conspiracy to steal his dignity. When I began to sell his stocks to pay for my parents’ major medical bills and living expenses, he saw it as the destruction of his independence. When I took over the bill paying to put an end to the utility companies’ threats to turn off the heat, lights, and phone, Dad detected a challenge to his manhood. And when I was forced to invoke a healthcare power of attorney to allow the ambulance driver to take my mother to the emergency room over my father’s objections, he felt a personal affront to his authority.

Somehow I’d become the enemy, the one who was stealing things behind his back, the one who was constantly plotting to make his life miserable.

I wish we’d talked about this stuff when things were more normal!

Casualties Afterward

For many families who try to sweep end-of-life issues under the rug until it’s too late, bad consequences don’t end with the death of the parents. The story of Sara, Kate, and Jon, friends of mine since childhood, exemplifies the experience of many families I have spent time with in preparing to write this book.

My friends’ parents hadn’t done any real contingency planning for their last years, nor had they shared with their three children how they’d like decisions made when they were no longer physically and mentally capable of making those decisions themselves. As a result, the lives of Sara, Kate, and Jon were tragically altered in ways that their parents certainly didn’t intend.

Jon, as the baby in the family, had grown up being taken care of by his two older sisters. So when the responsibilities of role reversal started piling up, he was at a loss as to what to do. Since his parents had created a vacuum for their kids by never having the Other Talk, Jon opted for the sidelines.

Ultimately, he took on the role of chief critic of his sisters’ decision making, usually after the fact, and he rarely participated in the care of his parents. And when it became apparent that not only was there no estate left but there was a rather large debt that had been incurred for medical needs and assisted living, Jon blamed his sisters for this predicament and simply walked away from the family, even though he lived only 20 minutes away from his parents.

Kate, who became her parents’ caregiver, suffered a fate that afflicts many adult children who attempt to deal with their parents’ medical and emotional needs from a distance. Her employer, a large advertising agency in Chicago, valued her skill and accomplishments as an art director, and the company had cut her a good deal of slack to take care of her parents, who lived almost four hours away. But eventually her mounting caregiver responsibilities eroded her ability to perform in high-pressure situations that demanded a quick turnaround, and Kate lost her job.

Unfortunately, she has never found another job, which has put a severe strain on her family’s finances and her relationship with her husband.

Sara, who took on the function of scheduling caregivers, paying bills, and generally keeping everything running on time, learned the hard way why 30 percent of bankruptcies in the United States are caused by overwhelming medical bills.

When her father’s modest savings were depleted, Sara took out a home equity loan on her house to pay for her parents’ expenses. When her father passed away, 18 months after her mother, Sara was faced with a bank loan that had reached 130 percent of the value of her house due to a real estate free fall; a formerly lucrative research business that had slowed to a crawl; a sister who had committed to help repay the home equity loan but now couldn’t; and a brother who had abandoned the family.

Sara and her husband lost their house and begrudgingly tried to pick up the pieces after declaring bankruptcy. Ultimately, the situation proved too much for the two of them, ending in divorce.

It is safe to say that their parents didn’t intend this outcome for their children.

It is also highly likely that if the two parents had embraced the concept of the Other Talk rather than desperately clinging to their version of the rose garden exit strategy, Sara, Kate, and Jon would be in a very different place today—emotionally, psychologically, and financially.

Silence That Can Engulf the Entire Family

I don’t want to end this chapter by leaving the impression that silence on the aging process, consequences, and outcomes is embraced and, therefore, enforced only by the parents. In my research, I have come across many instances in which the entire family is complicit in building a wall around anything to do with the last stage of life.

Here’s one example as told to me by Dr. Martha Twaddle, medical director of the Midwest Palliative & Hospice CareCenter:

According to the in-take sheet, the children are unaware of how sick their mother is.

On my initial visit, she was so weak, she couldn’t lift her head up, her husband was feeding her, she was bed bound, and she couldn’t get to the bathroom on her own. I said to myself, if she lives the next few days, it will be a miracle.

The kids are clueless, they have no idea, but they do know something’s terribly wrong.

The kids won’t go in her room. The husband won’t cry. Even the dog’s acting funny. Because everybody’s trying to ignore it. They’ve been scared into an eerie silence.