To describe my mother, I only dare use words she’s applied to herself. Elaine Koppel Saag is a perfectionist. She is “always honest,” “rarely wrong,” and has a clear definition of what is “right.” Nothing is too good for her family. If you buy something, you buy “the best”—no off brands or overstock merchandise, and buying retail means it’s better. When you throw a party, it is a bash folks will talk about for years. When you give a gift, it is something fine and memorable.
Her reputation for demanding excellence and exerting control earned my mother the affectionate nickname The Big E. She wears it proudly, in life and on the BIG E vanity license plate on her car.
The Big E was a feistier, more assertive version of June Cleaver from television’s Leave It to Beaver, the classic stay-at-home mom of the 1950s. She was known for her chopped liver and her cheesecake, which rivaled the famed version from New York City’s Carnegie Deli. She played some golf and frequently won the nine-hole ladies’ championship at the Standard Country Club. She served as president of the Sisterhood women’s group at our temple while retaining her status as a social more than a strongly religious Jew. Through sixty years of marriage, she and my father complemented each other like a well-rehearsed vaudeville team: Eddie was the free-wheeling, fun-loving rascal, Elaine the anchor and enforcer.
Mom has a cackling laugh and a sharp, sarcastic tongue. From my youth, she labeled me “a smartass.” Once I got my medical degree, I was “The Fercockta Doctor” (Yiddish for screwed up), in contrast to my cousin Dr. Ken Saag, a rheumatologist whom she dubbed “The Good Doctor.” I recognize the labels as terms of endearment just as much as when she calls me “My Michael,” a nickname so persistent that even her friends call me that. When Amy and I left Louisville after medical school to go to Birmingham, The Big E sat on her porch and cried, whispering to my dad, “They’re not coming back.” Mothers know.
Mom has taken obvious pride in seeing her children launch into the world and raise families of their own, me in Birmingham and my sisters in Louisville. Firstborn Terry, the overachiever, became a speech pathologist; her husband Gary is a dentist. Barbara, the onetime rebel, became an educator; her husband Greg went into the family lighting business. As Terry has said of the siblings, “You look at the three of us and oh boy, are we all different!” I believe Barbara would second that (and note wryly that it’s one of the few things on which she and Terry agree). I’m still the baby, the get-along guy, the one the others probably indulge too much. My sisters say they see a lot of our parents’ good traits in me, and I say the same about them—we didn’t turn out so badly. And we gave The Big E and “Pops” a total of seven grandchildren.
When our clan gathers for holidays in Louisville, the evenings overflow with great food and drink, ribald humor, and old songs. My mother, now in her mideighties, may ignore a detail from present-day information but recalls stories from the past in exquisite detail.
Since October 11, 2008, there’s an emptiness at the center of all this joy. It’s the place where Pops should sit. If we hold Mom extra tight, it’s because we fear the moment her place will be empty as well. Amid the chaotic and happy clamor of a family gathering, when we think of Pops’s last days we know what we all wish for: the peaceful passing, the “good death.”
From his youth, Eddie Saag was a vibrant man, fit and athletic. He entered the US Army at age eighteen and sailed through basic training. When it came time for his platoon to be sent overseas, he somehow wrangled a promotion to corporal so he could be in charge of training new recruits. That meant he had to be in superior shape and outperform them at the obstacle courses, fitness, and endurance tests. But that was fine with Dad, who already was living by the philosophy he later would preach to his kids: Never give up. No matter what the circumstance, don’t be a quitter.
The first time I remember my father talking about aging, I was eight years old. He was complaining to another relative that his Uncle Sam, his mother Lela’s brother, was “not growing old gracefully.” Because Sam couldn’t do everything he once could do, he was becoming angry and bitter, Dad said. “Such a shanda [shame].” As with many grown-up conversations on which I eavesdropped, I didn’t comprehend everything. But I could tell Dad felt Sam was wasting time lamenting the inevitable. I now realize I was listening in on Dad’s philosophy of life: Embrace what we have, make the most of it until there is nothing left to embrace.
To celebrate my graduation from medical school in 1981, The Big E insisted on throwing a party that was grand even by her standards. She moved the furniture to make room for a crowd, put out enormous buffets of food, and invited everyone she felt had contributed in any way to my MD degree. That meant key professors and mentors from the University of Louisville such as Jeff Callan (head of dermatology), family, friends, and fellow students including three—Eddie Tillett, Barry Klein, and David Robie—who were my classmates both in medical school and at Mrs. Chance’s Nursery School. It was a great celebration, a great afternoon.
When the party was over and everyone had left, my father took me back to the bedroom and closed the door. He told me how proud he was of me, and how this accomplishment was a shining example of sticking with what you start. Then he said, “Michael, one day I’m going to need a favor from you. One day I’m going to become a GOMER.”
That term was one Dad had picked up from me when I was reading The House of God, a satirical novel about medical internship written by “Samuel Shem, MD” (the pen name for psychiatrist-writer Stephen Bergman). In the fictional hospital in the book, GOMER was the staff’s acronym for Get Out of My Emergency Room, a label they applied to aged or incurably sick individuals who had lost the essence of meaningful life yet were still alive.
My dad’s father, David Saag, died at age eighty, and after my dad reached that milestone himself, he used to joke, “I made a deal with God that if I could live to eighty, I’d be a happy man. At seventy-nine, I renegotiated!” However, my dad also had watched as his aging mother, Lela, lost her hearing, most of her sight, and many of her friends. By the time Lela died at age ninety-eight, she was lonely and miserable. When Dad used the term GOMER, I knew what it meant to him: a person who had reached that place where life doesn’t seem worth living anymore, where the suffering is too great and extending life only prolongs that pain.
“I don’t know when that time is going to come,” Dad said to me, “but I’ll know when I see it. And then I’m going to turn to you and I’m going to need your help.”
I nodded, I hugged him, and I said, “Pops, I don’t think that will be any time soon.” We left the room and never again spoke about it. The covenant had been made.
I have now seen the age Dad was when our first child, Andy, was born. For some reason, he seemed a lot older than I feel now. Yet even as he aged, he was still vibrant, still a foundation and an inspiration for everyone in our family.
When I asked Terry and Barbara for their reflections, Barbara recalled,
Dad always seemed able to pull out the silver lining in a situation. He had a sensitivity to other people, a soft spot for people in trouble, and a way of finding the best in people, even in the worst times.
Added Terry:
He always had a joke or humorous quip to tell. Whenever he stopped joking, that was our signal he was not feeling well or was in pain; but he never, ever complained.
Dad’s health began to decline in his seventies. Erosion of cartilage in his knees left him with a pronounced limp. Arthritis caused him pain in virtually every joint, especially his wrists and back, and necessitated first one hip replacement and then a second. By the late 1990s, the part of the artificial hip joint that was embedded in the marrow of his right thigh bone had become loose and was painfully “pistoning” (moving up and down) inside the bone every time he took a step.
I brought Dad to UAB for an evaluation by Dr. John Cuckler, an orthopedic surgeon who specializes in hip “redos.” In an X-ray of Dad’s right hip that also showed the thigh bone, the femur, a sharp-eyed radiologist noted a circular, less-opaque area that was consistent with a type of blood cancer called myeloma. When Dr. Cuckler operated, he put in a new hip that worked well for the rest of Dad’s life; he also scooped out the suspicious area of the femur, sent it to pathology, and replaced it with a bone graft. Examination of the material confirmed that Dad had myeloma.
Multiple myeloma is a blood cancer in which certain cells of the immune system, the ones responsible for producing infection-fighting antibodies, clonally expand and grow uncontrollably. These cells can set up a nest inside bone or other tissues and destroy the area around them. Not much can be done about this condition, which often leads to “freak” fractures in which the weakened bone snaps during mild activity such as picking up a bucket or pulling a car door closed.
On one level, my dad was lucky. The lesion in his femur was the only one in his body. After its removal and the bone graft, he never had another problem with his bones, in part because of an osteoporosis medication that he took in monthly intravenous infusions for the rest of his life. But he still had the myeloma, which has another pernicious effect. The tumor cells that circulate in the blood and live in the bone marrow secrete antibody protein fragments that get deposited in tissues throughout the body, including the liver, heart, muscle, and brain. This condition, called amyloidosis, began to wear away at my dad in much the way I had seen HIV wear away at my patients. As the years passed, his heart couldn’t pump as strongly as in the past, his gut didn’t absorb nutrients as well, his lungs became a bit more stiff, and his thinking slowed “just a titch,” as southerners say.
Barbara:
When they found the myeloma in his leg, I think Dad took it as a heads-up that he wasn’t going to be around forever, and he began making plans. He had built the house where we grew up, and while Mom sometimes would say, “Let’s go to a condo,” Dad never wanted to move. But then three or four years before he died, he’s the one who decides to sell the house and move. He wanted to get her settled while he could.
He was also plagued with pulmonary artery hypertension. Think of it as high blood pressure of the artery that leads from the heart to the lungs. When the blood pressure increases in the pulmonary artery, it causes a sort of traffic jam of blood trying to leave the heart and get into the lungs. This backs up the blood flow into the liver and the lower extremities, causing accumulated fluid to bloat Dad’s legs and occasionally ooze out into his socks.
Between the amyloid weakening his heart and the pulmonary artery hypertension affecting blood flow, Dad was feeling all of his eighty-three years at his birthday in September 2007. He was having significant shortness of breath and trouble getting around, and he needed more and more help from his children—typically, Terry during the week, Barbara on the weekends, and me on the phone with his providers as needed. Like so many “sandwich generation” adults, my sisters were the heroes, tending to their own kids and careers while also being on-site caregivers to our parents.
Terry: We siblings joked that, as opposed to all the dysfunctional families you hear about, we were a “functional family” in helping Mom and Dad. Each of us had a natural role and knew what our role was. It worked out very well. And Dad was a very easy person to take care of. He was just always super-appreciative of whatever was done for him by anybody. As his decline continued, there was dignity after dignity that was taken away from him, and each time you could see it just killed him to have to give up whatever it was, whether it was going from a cane to a walker, or having to use oxygen and carry it around with him. But once he got over the initial shock of any of that, he would start making jokes about it. [He called his cane “cane yehi ratzon,” a pun on the phrase recited at Yom Kippur, ken yehi ratzon, which means “May it be God’s will.”]
In a survey of adults over fifty conducted by the nonpartisan healthcare advocacy group Campaign for Better Care (CBC), three out of four participants said they wished their doctors communicated and shared information with each other more effectively. When that doesn’t happen, the CBC survey found, patients and family members struggle to close the information gaps. Both my sisters played this role for my parents. They attended medical appointments, took notes, asked questions, and intervened whenever necessary to help my parents manage the baffling, frustrating aspects of the healthcare system—including insurance. Terry, especially, became Dad’s “healthcare navigator.”
For the thirty years that Dad owned and ran AM Electric (the lighting company he bought with proceeds from the sale of the drive-in theaters), he had health insurance through Blue Cross Blue Shield of Kentucky. Like most people who are insured through their employer, the company paid the majority of Dad’s health insurance cost, and he paid the rest. After retirement, his insurance became Medicare plus a supplemental policy he bought from Anthem BCBS of Kentucky.
There are dozens, perhaps hundreds of Medicare supplemental policies, each with its own costs, benefits, limits, and nuances. Customers are either at the mercy of an agent or on their own in trying to determine which variation is best for them. It is difficult if not impossible for even the most competent consumer to fully understand all the features of these programs and select the product that is best for them—in part because of the complexities of the programs, but also because no one is quite sure what their healthcare status is going to be one, two, or three years from the time they purchase the insurance when illnesses emerge, sometimes catastrophic ones.
So we learned. In spring 2008, when we tried to get Dad on a new drug to treat his pulmonary artery hypertension, the pharmacist apologetically told him that his insurance didn’t cover the drug. From then on, every month for the rest of his life, it seemed like Dad’s battles were as much with flaws of the healthcare system as with his body.
In my dad’s case, things were complicated by the passage of the Medicare Part D program. I know the popular spin on Part D was that it would be a godsend, ensuring drug coverage for the elderly and other Medicare beneficiaries. The reality is that the 2003 law creating Part D was essentially designed by lobbyists and “friends” of the pharmaceutical industry to ensure payment for products that they manufacture. Here’s a simple summary of the bill from ProPublica:
As ideas for the prescription drug benefit were being debated, several proposals were introduced that would have allowed the government to negotiate for lower drug prices, as it does for the drugs it buys for Medicaid and for the Department of Veterans Affairs. But after intense lobbying by pharmaceutical companies and strong-arm tactics by House leaders, the final bill instead specifically barred the government from negotiating lower drug prices. It also banned importation of cheaper drugs from Canada and gave drug companies stronger protections against their generic competitors.
So, Medicare was left to pay top dollar for all medications. And under the philosophy that delivering essential medications is a “business” and should operate as a “free-market” enterprise, the consumers (read: the elderly) were left to choose which of the forty or fifty Medicare Part D plans would best fit their needs. I tried to help my mom and dad make this choice by going to a website, plugging in the medications that they were taking, and seeing which Part D supplemental program would cover those medications at the lowest premium cost.
Like countless other Americans who help elderly parents and friends with this task, I did my best to enable my parents to cover their needs and not bust their budget. But also like countless others, I couldn’t anticipate that Dad would develop new conditions that required more drug spending and that he’d land in “the doughnut hole,” The System’s cutesy name for the Part D coverage gap where seniors must pay all their drug bills until they hit the out-of-pocket threshold where coverage resumes.
I also couldn’t anticipate that Dad would require a drug not included in the Part D plan we chose, and thus we would have to go through a mind-boggling process to seek special authorizations and approvals—or else find a way to pay for it himself. Paying out of pocket for the supposed new “wonder drug” for pulmonary artery hypertension would cost Dad around $7,200 per month. (Yes, $7,200 per month!) I called the company to inquire about a compassionate use program, which they had, but even on his fixed income, Dad didn’t meet the program’s financial qualifications. At that point, his options seemed clear: Either go without the medicine and let the pulmonary artery hypertension take its course, or dig into the nest egg he had built for sixty years to support his retirement and my mom after he was gone.
Dad was all for option #1; he had no interest in draining their savings to add months to his life. Then Terry, to her credit, found another way. Though Dad was an honorably discharged veteran with two Purple Hearts, he had not gone to the Veterans Administration hospital for care because he had private insurance most of his life, then Medicare. But Terry approached the VA to see if Dad could get the medication covered there.
In early May, we went to the Louisville VA Medical Center to get Dad evaluated for this drug. I remember Dad was in horrible shape that day; he was really short of breath and could hardly get to the hospital. The doctor examined him and talked to us about getting the drug, but he said, “My gosh, that is the least of his problems right now!” He said that because Dad’s heart wasn’t pumping efficiently, the space around Dad’s lungs was filled with fluid and he was getting very little oxygen. So Dad ended up in the hospital to have the fluid drained. And that helped for a while.
At the end of May, I went with Dad and Mom to another appointment. The doctor turned to Dad and said, “I think you need to get your affairs in order, there’s nothing more we can do for you.” Mom had tears streaming down her face. But Dad said, “That’s okay, I’ve had a wonderful life, I have no regrets.” He asked how long the doctor thought he had and the doctor said, maybe three months. At that point, we wondered if getting the new drug was worth the aggravation, but Michael said it might improve Dad’s quality of life.
In late June, thanks to Terry and the VA, Dad finally began receiving the new drug. Perhaps we had started it too late, or perhaps the drug wasn’t potent enough to treat the degree of pulmonary artery hypertension that he had. For whatever reason, the costly drug we’d battled to get simply didn’t seem to be helping him. In July, Terry took him back to the VA hospital for a checkup and, “as opposed to the physician who had recommended that Dad take this new drug, we saw another doctor who said it was completely inappropriate and not necessary,” she recalls. “After all the aggravation of trying to get it and anguishing about the cost of it, Dad had to sit through that.”
Within weeks, the wonder drug would be dropped. By now, Dad was on steroids to deal with the constant, pervasive pain of the arthritis in his back and extremities. It was a struggle for him to get up from a sitting position or to get his clothes on. His skin was thinning. Because even the slightest bump against a surface or a doorway could cause him to bleed profusely, Mom started carrying bandages with her everywhere they went. There were repeated trips to the hospital to drain the fluid around his lungs and treat sepsis (bloodstream infections). Terry recalls one episode in August:
Mom called and when I got to their house, Dad was sitting in a chair shaking, having trouble breathing, and shivering—he was septic, and it was really hard to look at. We were in the ER for the longest time and there he was with his arthritis, lying on that uncomfortable bed. He was being examined by one of the staff physicians, the so-called “hospitalists,” and it seems like any time you mention anything, they run a test.
I’ll never forgive myself for this, but I made an offhand comment that Dad’s toes looked a little blue. So what did they do? They ordered a test, a venous doppler to check his circulation—a test he had had not that long before! To do the test, they had to take him down to the bowels of the hospital, and they left him there in a cubicle with a curtain closed around him. He was waiting so long that he needed to go to the bathroom, but there was no one there to help him—so he had to start screaming, “Help, help!” From then on, whenever he went for tests in the hospital, one of us went with him.
Just before Labor Day that year, 2008, I went to Louisville with my video camera. I knew why I brought it. Dad knew why I brought it. But all I said was, “Hey, Dad, let me interview you here for a little bit,” and all he said was, “Fine.” I clipped a microphone to his shirt and set up the camera on a portable TV table in the living room. We sat facing each other, him in the black leather swivel rocker known as “Pops’s Chair.” For more than three hours, we talked.
I asked Dad to sing the old songs, including the outrageous, lewd ones that we had sung around Papaharry’s piano: “Dan Dan the Lavatory Man,” “Uncle Bud,” “Grandma’s in the Cellar.” I reminisced with him about family stories, like the time he got a Shelbyville, Indiana, restaurant to serve me beer with my fried chicken—at age twelve.
I had him recount his experiences in France during the war and especially after the war, when US soldiers were left for a year or two longer in the European theater because there wasn’t an easy way to get them back home. During that time, Dad had gone to film school and had made a scrapbook of his experiences, something I had never before seen. As the video camera hummed softly, Dad flipped the pages of the scrapbook and described every picture. He did not need to say what we both understood—that we might not turn these pages together again.
Though I visited Louisville as often as I could as Dad’s health declined, most of the time it fell to Barbara and Terry to guide him through the minefields of the healthcare system. Terry says that most of the people involved in Dad’s medical care “were compassionate and wonderful,” and I believe her. But the care was delivered despite the obstacles we place between caregivers and patients. A typical primary care physician who sees Medicare patients must coordinate care for those patients with 229 other physicians who work in 117 different practices, according to the Annals of Internal Medicine (2009). And in the current system, doctors generally aren’t reimbursed for their time making those contacts—so their efforts to practice collaborative, coordinated patient care while paying staff and other expenses mean they lose money with every call.
My sisters are smart, determined women who fiercely protect those they love, and they monitored Dad’s care intensively. But for all the providers’ good intentions and for all my sisters’ diligence and advocacy, Dad still suffered from medical missteps that were unfortunate and, given The System, inevitable.
Early in September, when Dad again needed fluid drained from around his lungs, Barbara was at the hospital to be his watchdog.
Dad was there to get the lung procedure, that was it—but they were still trying to do all these other tests. I had told the hospital that his skin came off when anything was stuck to it and I literally posted signs all over the room—“NO TAPE!” “DO NOT PUT TAPE ON THIS PATIENT!”—but at some point in the night, someone put tape on his skin. So the next day, I talked to the hospitalist, and he’s like, “I’m so sorry.” And the next minute, some lady comes in to do an electrocardiogram for which they have to stick on the electrodes—and I said, “NO, you are NOT going to do that to him! I will sign off, I will take responsibility if he has a heart attack, but there is to be NO tape on this man!” And after that, one thing we all decided is that Dad would not go back to the hospital again no matter what. And he didn’t.
To manage his growing list of ailments, Dad was taking lots of medications. That’s not unusual for people his age: According to a study by the Centers for Disease Control and Prevention and the Merck Institute of Aging and Health, the average seventy-five-year-old in America has three chronic conditions and takes five prescription drugs. Shortly after that final hospitalization, Dad had spent his way into the Part D “doughnut hole” where Medicare would not cover hundreds of dollars’ worth of drugs that he had to have to stay alive. Terry again contacted the VA, which rode to the rescue and covered the medications that Medicare would not. Dad and Mom were so grateful that they had Terry deliver one of those “edible bouquet” fruit baskets to the VA staff. But for many seniors, the “doughnut hole” will remain a burden until 2020, when it is to be eliminated by Affordable Care Act reforms.
Dad turned eighty-four on September 21, 2008. When I came to Louisville to celebrate, I was struck by how much he had deteriorated physically since Labor Day. But in his heart, he still was “Big Fred,” the free-wheeling, fun-loving rascal. And he still had a few birthday toasts in him, the saltier the better.
Barbara says I got out the shot glasses and Jack Daniels; I could have sworn she did. No matter. She, her husband, Greg, Dad, and I sat around the condo’s dining room table. With Mom looking on, Dad proceeded, with good humor and a sort of backhanded forgiveness, to toast every single person in the US healthcare system who had done him wrong. “To the guys who left me on the gurney in the hospital basement: F—’em!” he said, and we clinked glasses, took a swig, and poured refills. “To the person who didn’t listen when I told them ‘No tape’: F—’em!” Another clink, another swig, another pour. He named each injury and indignity, turned it into a joke, laughed harder than any of us—and concluded, “F—’em all!”
Late September and early October brought the Jewish High Holy Days, and some of the sweetest hours Terry and Barbara remember with Dad.
On Wednesday night, October 8, Mom was at the synagogue for the Kol Nidrei service that begins Yom Kippur. Terry stayed with Dad until Barbara could spell her, and then was heading to North Carolina for a brief visit to celebrate her grandson’s birthday.
Terry: The home healthcare workers had been called in because Dad could no longer walk to the bathroom, even with the walker. For weeks before this, I had spent parts of most days with him and we had had these wonderful discussions. He had told me all these stories from his life, things I never knew had happened, things that made me laugh and things that made me admire him even more. I knew he wanted me to go visit my grandson, but as I was walking down the hall after saying good-bye to him, I was sobbing.
Barbara: I can’t stand going to services, so I stayed with Dad on the holidays, and that was some of the most memorable time. Dad and Michael and I are all alike in that we have music in our heads all the time, and no idea where it comes from. So I would bring music to play for Dad. He liked show tunes and funny songs, so I would put on Alan Sherman and Smothers Brothers routines … songs from My Fair Lady … “I Did It My Way,” and “What a Wonderful World.”
I had been with Dad the Monday before Yom Kippur, returned to Birmingham during the week, and then came back to Louisville on Friday night. I found Dad in his bedroom, which had been made over with a hospital bed and bedside commode. We hugged and talked. Though the home health nurse would remain overnight, I told her I would stay in the room with him. I encouraged Mom to get some sleep on the pullout couch in the living room and urged Barbara to head home for a break. For a while, I squeezed into the hospital bed next to Dad, who rested his head on my shoulder. I remember thinking two things: that at the end, the child becomes the parent—and that this moment was too precious to last.
About 11:00 p.m., Dad said he had to go to the bathroom. I helped him sit up on the side of the bed and asked if he could stand, but he had no power in his legs at all. I put my arms under his armpits and lifted him enough that I could pivot him on his heels and half-drop him onto the bedside commode. After he had finished, I picked him up, but I couldn’t lift him enough to place him back in bed, so we lunged forward and fell onto the bed together. Three hours later, about 2:00 a.m., he called out again. I helped him sit on the side of the bed and placed his arms around my neck. His face was right next to my ear and in a raspy voice he whispered, “I gotta pish,” so we repeated the awkward maneuver to get him on and off the commode. Lifting him repeatedly had sheared off patches of skin in his armpits, leaving large swaths of bright red, denuded skin, so when I lifted him the last time, he grimaced in pain. Seeing what pain I’d caused, but not wanting him to see me cry, I blinked back tears as I adjusted his sheet and blankets.
Dad reached up, grabbed my hand, looked me in the eye, and said two words: “It’s time.” I stared at him for a minute and asked, “Are you sure?” He said “Go get your mother.” I went to the living room, woke my mother, and brought her into the bedroom.
Dad turned to Mom and said, “Elaine, this is it.”
“What’s it?” she replied.
“This is it,” he repeated. “I need to go now.”
My sisters and I had known The Big E was living in denial. She looked at Dad in disbelief and tried to argue: “You’re not that sick. You’re not going anywhere.”
Dad’s voice was firm: “It’s the end, Elaine, I need to go.” Mom bent her head down and they hugged. She was crying softly; Dad did not show much emotion. He simply knew it was time.
There was no medicine left to change the situation—nothing that would return strength to his legs or heal his skin, nothing that would relieve his shortness of breath or replace the sixty pounds he had lost. There were, however, medicines that could ease his pain. Up until this time, he never took any pain medicines. That’s the medicine he wanted me to administer.
I called Terry in North Carolina and asked if she wanted me to wait until she got back to administer the pain medication. We knew that in his debilitated, weakened state, the medication would put him right to sleep and he would not likely reawaken. She said, “No, go ahead; he and I have already said good-bye.” I called Barbara, who came over immediately, in time for Dad to deliver a parting joke. As Election Day was nearing, he said with a weak smile, “I think I’m going to send in an absentee ballot. But it’s going to ask me where I’m relocating, and I’ll have to say, I don’t know …”
While Barbara loaded the cassette tape recorder with the music Dad loved, I put on a fentanyl patch, the prescription we had been given by his doctor, to deliver pain relief through Dad’s fragile skin. As Barbara sang along to the show tunes, Dad briefly waved his hands in the air as if conducting an orchestra of angels. Then he drifted off to sleep and was peacefully sleeping when Terry and her husband, Gary, arrived about 11:00 a.m. Saturday. I couldn’t tell for sure if he was having any pain, so I administered a little morphine under his tongue. As relatives moved quietly in and out of the bedroom throughout the afternoon, his breathing became slower. His breathing slowed to a stop near 7:00 p.m.
In Judaism the biggest mitzvah you can provide any other person is to bury them. It is considered the greatest good deed because it is the one favor you can do for someone else that they never can repay. In my Dad’s case, we were able to perform a double mitzvah: to bury him, but also to help him die with dignity on his own terms, in his way, in his home and not in a hospital. It was little enough to repay him for all the gifts he gave us throughout our lives. But for me, it is the most meaningful gift I have ever given anyone in my life.
To this day, I have not looked at the videos I made of Dad. I’m not sure when I will.
Every year on Dad’s birthday, I get an email from Barbara, the same request she sends to Terry and Gary, to Greg and Amy, and to all of Eddie’s grandkids. “Sometime during the day,” the email says, “I hope you will sing one of the Pops’s songs.” Everybody emails back to everybody else, naming the song they chose. And when we do this, we smile.
All his life, my father played by the rules, worked hard, and looked out for the people he loved. At the end, it was our privilege to look out for him.
But we’re just one family in a pervasively screwed-up system. Who’s watching out for all the other people, like you?