Hope For a Cool Pillow – Chapter Four

Four

 

For a fiftieth birthday gift, two friends bought me a session with a famous astrologer. I thought the entire idea was ludicrous. I’d spent my whole career in a scientific field—specifically medicine, sub-specifically anesthesiology—which does not lend itself to astrological interpretation or intervention even though I acknowledge that crazy stuff happens when there’s a full moon. But I’ve never been one who “believed” in astrology.   I occasionally read my horoscope in the newspaper mostly because it was next to the Jumble. It never revealed anything meaningful.   But I was at a low point; dementia takes its toll on family as well as on the afflicted. Besides, I hoped the astrologer could make an educated guess as to whether there might be love in my future. I obviously wanted a pass on long life if it involved senility and I didn’t much care about fortune, as I knew that work suited me better than leisure. Leisure—in my case—usually meant bug bites, puffy eyes, and large credit card bills. I made particularly bad decisions when idle. I’d read articles about people who won the lottery; it ruined most of them. So I knew better than to relax and let tranquility destroy me. But who didn’t want love?

Out of curiosity I visited the astrologer—a doughy woman with thinning hair—who worked in a Chicago office south of the river near the old Carbide & Carbon building. She recorded our conversation and spoke with startling accuracy about my past. She stated that my birth circumstances were unusual and I didn’t fit the typical description for my sign. I had been born in the brief time span between a lunar and a solar eclipse. “Your life must seem fated,” she murmured, her voice deceptively bland. “As if life pushes you in a particular direction.” I had not thought of my life as ‘fated’ as much as a litany of incredible coincidences. Sometimes I had an uncanny ability to see signs that strangely forecasted events, even warning of imminent danger. I typically ignored them.

“Taurus fits you better,” she said. “Read that horoscope in the paper.” Perfect. I’d been reading the wrong horoscope my whole life. No wonder it seemed useless.

“There’s something highly significant about your chart, an unusual division of the elements. You have four planets in air signs—it gives you an uncanny ability to communicate, and extreme curiosity. You’re mentally young for your age. Quality or modes—five are in fixed signs—that’s a sign of tenacity, not an Arian quality. The downside of tenacity is that you don’t know when to let go. You need to learn to trust your intuition. Even if intuition goes against what you’ve been told.” I agreed with her that I didn’t know when to let go. But my intuition was better than I thought? What if my intuition told me not to trust my intuition?

“You have lots of planets in work. Innovation, creativity, research. You like finding things out and putting a different spin on it,” she said.

“Between now and April 9, 2013, there’s a new development level. Then a static period. Until the new moon in 2016. You’ll want to lay the groundwork for any creative work before 2013. There will be a lot of wasted time and energy during those three years. You’ll feel guided by others. Use it to do inner work. Maybe go to an ashram. You’ll want to have flowers, perhaps buy some property.”

I had to ask. “What about love?”

“I don’t see much happening with your Venus. Have you tried Internet dating? That might work for you.

I had tried Internet dating. It did not work for me. I was writing a book about how it did not work for me, among other things.

One other thing the astrologer mentioned—I should prepare for my mother’s demise.

~

The retirement community where Mom lived provided two meals a day, weekly cleaning, and laundry service with the monthly assessment. You could pay extra for certain amenities, like having a nurse stop by once a week, once a day, or multiple times a day and hover—tapping her foot impatiently—while your parent took her medications as slow as humanly possible and with her face set just so. There were additional charges for bathing and hair care. For a fee your mom could take the bus service to the local grocery store as well as a number of different churches and medical centers, wander around, get lost, then get picked up again after having no recollection of where she’d been or what she’d done. The retirement community offered organized activities such as bingo, musical events, movies, and sing-a-longs. Mom didn’t participate until her dementia advanced and Vicki encouraged her. Vicki could get her to enjoy herself. I didn’t have the patience.

When Mom turned ninety my sisters and I took her to Florida to celebrate her birthday. We lost her at a shopping mall in Boca Raton.

It turns out that losing old people is a major problem. Those with dementia have a tendency to wander off or even drive off. Time is critical and the outcome is often bad, meaning they are found dead. My sister Beth and I sat together in the shoe department at Nordstrom—Beth was trying on something comfortable, expensive, and ugly—when I let Mom walk to the bathroom by herself. After all, I could see the entrance to the Ladies Room from my chair; it was less than fifty feet away. And we—I—still managed to lose her. What did it mean cognitively? She took a wrong turn; it could happen to anyone. Luckily, we were at an indoor mall, I remembered exactly what she was wearing, and the mall was in Florida where losing-old-people happens with some frequency. Security uses segways, allowing them to find missing-persons with a reassuring rapidity. They found Mom within twenty minutes—she’d wandered amazingly far in a short period of time—and without her realizing she’d been misplaced.

I don’t consider us lucky that Mom wandered off at the mall that afternoon in 2007, but we were fortunate that it happened when my sisters and I were together. We were forced to deal with it. We all recognized that Mom had crossed into a territory beyond which there was no turning back. The implications, the inconvenience, and the cost of this next giant step forward seemed enormous. But convincing our mother that she needed a caregiver would require another two and a half years. We had to balance her safety against her autonomy, her freedom against her dignity.   Role reversal took on complex layers of meaning. We used the utmost care in how we approached various issues—her medications, her checkbook, her finances—and each of us did it differently with equally poor results. We had already taken away her car after she’d broken her neck while playing golf at the age of eighty-eight. She wanted to maintain what precarious independence she had left. We did not blame her.

Dementia doesn’t look the same every day to every person. It doesn’t always sound like anything out of the ordinary over the phone. Mom had days when she could carry on a conversation as if she were twenty years younger, days when she remembered the names of all her grandchildren, where I worked, all the details of her past life and mine. And on those days, I agreed with her that she did not need a caregiver. But then she would ask me a question about a topic we had discussed just moments before. Her short-term memory could turn itself off and on and off, unpredictably. The ability to remember what just happened, where you are and were and what was said allows you to function in ways we implicitly take for granted. Our tendency, as offspring, is to use all the available evidence to underestimate how much our parents have declined mentally—it’s a well-described cognitive bias called the valence effect, or optimism bias. It’s also known as wishful thinking. In the evenings and at night, Mom often hallucinated. When I called in the mornings, she would describe her hallucinations to me.   It’s hard to pretend everything is okay when your mom describes a midnight visit from a long-dead dentist.

Now I try to deconstruct those experiences with my mother. I think I was levelheaded at the time, but in retrospect I wonder.   Dementia plays you like a seesaw, only the fulcrum refuses to stay put.   As adult “children”, we struggle with how to make decisions for the parents who once made decisions for us. We often depend on physicians but aren’t certain who to trust because of the conflicting information and advice. The flip side of wishful thinking is to err on the side of caution, which means doing too much of everything, whether it’s indicated or not. Who wants that kind of medical care?

Early in the summer of 2009, Bonnie and I met with a man named Robert who had recently started a caregiver agency. We sat with him in the lobby of the retirement community where Mom lived.

“Perhaps you could ask your mother to train someone to work with the elderly,” Robert suggested as a way to gently deceive Mom into allowing someone to help her. “I ran into the same problem with my mom. She didn’t want anyone in her home, even though she clearly needed help.”

We took Roberts’ advice, slowly introducing a young caregiver into our mother’s life. Mom wanted none of it. Over a month and with a lot of verbal maneuvering, she gradually, begrudgingly and without her usual grace, came to accept the intruder’s presence in her home. We started with four hours a day, five days a week. She fired the woman six times. And then one night in August of 2009, Mom fell out of bed and broke her arm.

The nurse where Mom lived called Bonnie first and the ambulance second. I arrived at the local hospital when they had been in the emergency room for an hour. Dr. Helms, Mom’s geriatrician, had decided to admit her because the pain medication made her more confused and ambulation would be an issue. She had broken her proximal humerus, just below the shoulder, which meant she could not push herself out of a chair. Luckily, she didn’t require surgery.

Mom and Bonnie and I waited hours in the ER before we were taken to Mom’s hospital room. They had assigned her to a general medicine/oncology floor. Because of her age and dementia, she was given a room near the nursing station. Bonnie and I had warned the nursing staff that she might wander, was at high risk for falling, and was likely to become increasingly confused by the unfamiliar environment. A number of nurses and aides came and went, trying to get her settled as the afternoon shift change approached.

I asked a nurse if we could bring up the guardrails on the bed so that Mom would not fall out.

“No, we don’t elevate guardrails on beds anymore. That’s considered a violation of patients’ rights. We have an alarm system that we put in place if you think she is likely to get out of bed.”

“What kind of alarm system?” I asked.

“There’s a sensor on the bed,” the woman pointed to a pad under the sheet. “We just hook that up. And then we place a pad on the floor beside the bed. We’ll push the bed itself next to the wall so that she can’t get out that way. The pad senses when she moves off of the mattress, and the pad on the floor has a sensing system also. It’s illegal to ‘confine’ patients now.”

I tried to take this in. Make sense of it. “So basically Mom is free to fall out of bed, get injured, and then the alarm will sound. But she would be illegally confined if we put up the side rails to prevent her from falling out in the first place. She has the right to be harmed, but not be confined,” I said.

There is no way that one system fits all patients, neither in concept nor in implementation. To protect some, we harm others. The rights of patients, as defined by politicians, were a rabbit hole.

“Well, no…the alarm sounds when she starts to leave the bed and someone at the nurses’ station hears the alarm and comes into the room,” the nurse assured me.

Maybe I look stupid. I don’t think I look stupid, but I’m often underestimated. I think it’s the blond hair. But I’m much smarter than I look. And I’d spent decades in hospitals listening to alarms go unattended at empty nursing stations. Hospitals—nation-wide—have staffing issues. Let’s not pretend here. I don’t know a single person who has ever worked in a hospital who has not had the experience of listening to alarms and call buttons ring and ring and ring. So I knew exactly what this whole scenario meant for my mother. We had a barn door and horse situation. Mom was already disoriented. Hell, I was disoriented! Add some pain medicine and she’d be hallucinating in no time. I closed my eyes and shook my head.

“It’s against the law to confine someone.” I heard stridency in her let-me-tell-you-the-rules voice, the certainty that creeps because if something is illegal, someone somewhere must have given it some thought, right? Instead of what really happens, instead of the massive bureaucratic compromises that actually occur in public policy everywhere particularly as applied to health care. That’s how our system works. Never assume common sense has been applied at any step along the way. Ever.

“But it’s not against the law to prevent them from falling out of bed,” I said. I wasn’t going to point out the obvious: that was how she’d broken her arm in the first place. And that occurred in her own home. Now we had a state law designed to protect patients that effectively accomplished the opposite. Doesn’t that define the law of unintended consequences?

“We’ll keep a close eye on her,” the nurse told me.

Right. I knew how that would go. Bonnie or I would need to be there twenty-four hours a day. Or we would have to hire someone. The good news was that Mom’s arm hurt enough that she wouldn’t use it to try to move around too much right at this moment.

“Can I go through her medications with you? I want to make certain that I have all the orders from Dr. Helms.”

I sat down and gave her the list of medications, allergies, food preferences, and then I told her to make certain the chart shows that she is Do Not Resuscitate.

The nurse gave me a cold look. “Are you the power of attorney?”

“Yes, I am,” I said mildly.

“And I suppose you have the paperwork with you? Is it something you carry in your purse just in case?”

I took a very slow deep breath. I took a cleansing breath. A do-not-lose-your-temper-now or you’ll-regret-it and your-mom-will-suffer breath. I searched my heart for my hard-earned clarity with regard to this bullshit. Where the hell was it?

“No,” I said, “but I can have it faxed if you give me the number.

Or I can bring it tomorrow.”

“Fine,” she said. She spun on her heel and was gone from the room.

This had turned into a completely ridiculous situation. And I’d made an enemy. My sisters and I decided that we did not want our mother resuscitated in the event of a cardiac arrest. We had discussed it with her physician. He agreed with us.

My mother’s life, at ninety-two, consisted of spending all day every day in a chair, staring at a television screen, unable to hear the dialogue, unable to read the words that ran across the bottom for the hearing-impaired. She looked forward to visits from family members, and then promptly forgot who visited as soon as we were out the door and complained that no one visited her. She was plagued by arthritis, confusion, loss of memory, and disorientation. Her bowels were completely unpredictable and a source of ongoing embarrassment and distress and pain to her. Until she forgot them too. That pretty much described a typical day. To make matters worse, she knew she was losing her mind and it tortured her. Imagine what that’s like, she often said.

If she were to have a cardiac arrest, a code blue team would rush into her room, pump on her chest, deliver an electric shock that jolted her entire body, put a tube down her throat, give drugs such as epinephrine, vasopressin, amiodarone, etc. Unfortunately, the rate of successful resuscitation of in-hospital patients over the age of 70 is around12%, though the data are all over the place. Resuscitation is one thing. Survival to discharge is quite another. Data for patients over ninety remain sparse, but are probably in the range of 3-5% survival. That’s how many survive the arrest. Very few actually leave the hospital. No one has looked at one- or three- or six-month survival, as far as I know. And I’ve searched. With a diagnosis of cancer the resuscitation rate is incredibly low, typically less than 5%. The numbers that are available do not parse out the quality of the resuscitation, meaning whether individuals who have been resuscitated are cognitively impaired, or even alert, or back to normal. It is generally assumed that resuscitation means they are simply alive. Our mother’s dementia had significantly worsened over the previous four years. Performing cardio-pulmonary resuscitation—it seems safe to assume—would not improve her mental status. If anything, were she to be successfully resuscitated, she would be even less with it than before. And a thirty-year old nurse was trying to shame me for not wanting that type of care for my beloved mother, who already was suffering. I would tell the nurse to go f**k herself, or better yet, educate herself, except that she’d probably take it out on my mom. And the problem really wasn’t this one nurse, it was the system that led her to believe that indiscriminate resuscitation constituted appropriate care in the first place.

We live in a society where we act first and think later, or don’t think at all, particularly with regard to resuscitation. Life at all costs! Life at any cost! And the medical establishment is implicated in this credo because of its very obvious, never discussed profit motive. Everybody gets resuscitated unless it is practically tattooed on your forehead, big oranges signs everywhere, your attorney and your physician at your bedside with legal documents in their hands at the time of your demise to prevent someone from instituting CPR. You could have every single organ system in total shutdown mode and they would still pump on your chest if you hadn’t dated the paperwork properly. And resuscitation doesn’t even work that well in the vast majority of people[i].

This is only one example, but it turns out to be an incredibly important example, of how far off-track American healthcare has gone. And I know. I’m part of it. I go to arrests all the time. Our emergency rooms and ICU’s are choked with elderly dying patients, often unaccompanied by relatives or paperwork, and nobody knows what to do so everything gets done until a day or two or three later when someone finally reaches a family member who says: Oh, Mom (or Dad or Auntie or Whomever) didn’t want to be resuscitated. We’d talked about it, we just never got around to filling out the paperwork. Please withdraw support! Resuscitation—by law—is a given; you must actively and with great difficulty opt out. In some states it’s nearly impossible. But more importantly, it is not one procedure, but a pathway. It is a pathway that starts simple but grows more complex, and that works well only in particular patients, costs money, often does harm, and—in the best circumstances, meaning in-hospital arrests with high quality CPR and ACLS (Advanced Cardiac Life Support)—results in thirty percent resuscitation. That sounds pretty good, but in fact only about five percent of survivors actually leave the hospital. And those tend to be the people you don’t expect to arrest; they usually have something treatable. Published statistics sound better than that, but I don’t believe them because I’ve seen how studies can skew results and it’s well documented that people don’t want to publish poor outcomes. Don’t even get me started on the research paid for by drug companies. There is high variability between studies; in other words, they aren’t reproducible. People arrest for a reason.

 

A few days after breaking her arm, Mom left the hospital for the nursing home facility affiliated with and located next door to her retirement community.   This nursing home had the same type of alarm system as there had been at the hospital, with the sensor pads on the bed and on the floor. Mom was at the nursing home for no more than a half hour before she fell out of bed and landed on the floor in an attempt to go to the bathroom alone. Because of her dementia, she did not remember to press the call button for assistance. And because of the type of nursing home that it was—average, no better or worse than most—no one would have come anyway.

I called Robert and asked if he had someone available who could care for her twenty-four hours a day. He said yes and she could begin that evening. Bonnie and I packed Mom up and took her home. From then on, Mom accepted a caregiver without question. That’s when Vicki entered our lives. Vicki moved in, giving Bonnie and me a much-needed respite.   Mom stopped fighting her battle for independence when Vicki arrived. She became docile. I breathed a sigh of relief at the same time my heart broke and I realized that the astrologer had been correct. The end was coming. Vicki took meticulous, loving care of Mom and Mom instantly adored Vicki. We were lucky that my father had planned ahead and saved enough for his and my mother’s old age so that we could afford to pay out of pocket for Vicki. We were lucky in an untold number of ways. It has taken me a long time to sort through them all.

~

For some reason, I returned to the astrologer shortly after my fifty-first birthday. Once again, I heard good things about my career. I heard about making connections, about my healing abilities. When I was born, Saturn was in a good place, career-wise. This would be life-long. The astrologer told me there was nothing happening with my Venus. Like I didn’t know that. Nor did she see it happening in the foreseeable future. And this woman looked very far into the future. She mentioned things that were going to happen in 2017. She said there would be unpleasantness around the 23rd of September 2010. That turned out to be the day after Mom died. Not the 22nd of September. So the astrologer was off by a day. No wonder I never believed in that stuff.

 

[i] Cooper, et al., Cardiopulmonary Resuscitation: History, Current Practice, and Future Direction, Circulation. 2006; 114: 2839-2849.

 

Hope For a Cool Pillow – Chapter Three

Three

“…No wonder you rise in the middle of the night

to look up the date of a famous battle in a book on war. 

No wonder the moon in the window seems to have drifted

out of a love poem that you used to know by heart.”

Forgetfulness, Billy Collins

 

I’ve never been to Beijing but they say on bad days the smog can be suffocating, even cause you to lose your bearings. I think of dementia that way, like living in Beijing, not understanding the language or the symbols, where nothing is familiar and the very air you breathe leaves you senseless. During Mom’s last few years, I often felt it myself. Overwhelmed, perhaps. Or in sympathy with her condition.

One day after work I knocked on Mom’s door then let myself into the condo with my key. I planned to visit her briefly, then drive downtown for an appointment with my therapist. I needed therapy because I suffered from cognitive dissonance[i]. Or at least that was the diagnosis I’d given myself. His diagnosis might have been somewhat different.

Perhaps I didn’t really need psychotherapy; perhaps I just liked having someone to talk to. Which seemed mostly consistent with a diagnosis of cognitive dissonance. Regardless, my therapist provided a constant, non-crazy person to relate to without having to worry that my problems would upset him. Or if he got upset, it was okay because I paid him. Usually, though, I tried not to upset him.

“How you doing, Mom?” I yelled at her. She sat in her favorite seat beneath a large picture window, in a blue upholstered chair that rocked ever so slightly, every which way. It was summertime. She had the A/C off and the temperature hovered around seventy-eight degrees. She wore jeans and a flannel shirt. Her gray hair still had a nice wave.

“Hanging in there,” she said with a half-smile. That was her answer to every inquiry about her wellbeing. Hanging in there. Usually she prefaced the answer with a long “Ooh,” which sounded melodic, resigned, and vaguely upbeat all at once. “And how are you, Margaret?”

“I’m fine,” I had to yell, because she couldn’t hear much with or without the hearing-aids anymore. But when I heard her say my name I felt that a crisis had been averted; an important piece of her mind remained intact. For the moment, anyway. “I just came from work,” I said.

“Oh, you came from work?” Mom’s habit of repeating my statement with a question had become increasingly familiar as her mastery of the present diminished. She tried to hide her short-term memory loss. The dementia had occurred over years though it was hard to be exact. Whose memory did that speak to? I looked back and wondered what constituted normal aging and what did not. When had this begun, exactly? Dementia seemed viral, definitely contagious. I forgot things all the time. Could I blame my mother? Sometimes I forgot to take Kleenex and wear sunscreen on my bike rides. I often forgot cilantro for the corn and mango salad I made umpteen times each summer. The signs of dementia are subtle until one knocks you flat. We had just begun having the retirement facility’s nurse visit daily to check on Mom. The nurse argued with me about everything. She wanted to lock up Mom’s medications in a suitcase. Mom threw a fit when she heard about it. I knew she’d pick the lock. I had to negotiate with both of them. We agreed to a suitcase, but kept it open. Like that made any sense.

I walked over to Mom, kissed her cheek. Age had shrunk her, bent her spine, thickened her, stiffened her. It had spared her beauty, however; her skin still felt soft; her face held few lines. I reached over her head and flipped on the air conditioning.

“I did come from work,” I said. “What’s going on with you?

“Oh, I’m not feeling too well today, honey.” I put a hand to her head and didn’t feel a fever. She looked pale but then she hadn’t spent time in the sun in over three years.

Not feeling too well could denote any number of things. It usually signaled bowel issues. One of the problems with her memory loss was that she forgot what she should eat, what she shouldn’t eat, when she’d eaten, and what hunger or fullness felt like. So dietary indiscretion was the norm. And she refused to wear Depends. Or she didn’t remember needing them. She could be surprisingly selective about what she forgot.

“I have to use the bathroom,” she said in a rush. She pushed herself out of her chair. I helped her walk there, less than ten steps away. She didn’t make it to the toilet.

 

I suppose the good news is that I eventually arrived at my therapist on time and did not have to think hard to find something to talk about that day. And I can deal with it—the role reversal, I mean. I have cleaned my share of everything, can handle all manner of human fluids and waste. It is part of the bigger picture. We are just common flesh.

The bad news is that after inserting every afflicted item of clothing and bath linen into the washer, I found a sponge and began to bleach the bathroom. And I realized that this explosion had precedent. It was old and dried and hard, but there. On the floor and on the walls. In every nook and cranny. I found poop that had splattered above eye level. I’m fairly tall. I tried to remember what principles of physics they’d taught us back in college that might apply. I’d barely passed physics, but still. Perhaps the four laws of thermodynamics pertained; perhaps those were the laws I needed to remember. Could entropy account for this? I found poop that had splashed so hard as to make two, possibly three ninety-degree turns. What were the physics of a splash? I tossed the sponge in favor of a scrub brush. All along I thought I should have paid more attention to electricity, specifically resistors. A little knowledge of electricity seems useful in life—if you want to install dimmer switches, overhead fans, change out light fixtures. You definitely want to know about fuses—I’d learned that one the hard way. But as it turned out I knew even less about physics than I’d ever suspected.

Mom rested in her chair. I felt like a janitor with post-traumatic stress disorder. She told me I was her angel. Did angels have trouble juggling conflicting thoughts and emotions? I wanted to shower and lie down in a womb somewhere. I wanted never to grow old. I wanted to have someone love me enough to never let it happen. But that someone didn’t exist. Not for me, not for her. And I loved her a lot.

She kissed me twice. I hugged her hard and tried not to let her see me cry. She laid her head back and rested again. I thanked God that the memory of it would be gone within minutes. It would have never happened. With someone else to clean for her, the incident would leave her mind sooner than if she’d had to clean up after herself. I thought about my sister Bonnie who frequently took Mom out to restaurants and had similar experiences in public. Bonnie is a better woman than I.

After washing the bathroom and then myself, I made certain that Mom was comfortable and had instructions for her evening’s meal. I had no doubt she would promptly forget what I told her, so I wrote it down. Usually, she found my instructions several days later and called, asking what I had meant by ‘Bananas, rice, applesauce, and toast’.   I kissed her again and sped downtown to see my therapist. He told me a horror story about his own elderly parents. They had one set of senses between the two of them. He told me he’d planned for his own old age. He’d bought a gun.

You bought a gun?!? Are you kidding me? You’re not supposed to tell me that.” I was appalled. I counted on him to be the sane one.

He shrugged.

I stared out the floor-to-ceiling windows. I thought about the gunshot wounds I saw in the trauma patients at work; they were usually self-inflicted and often in the elderly. I didn’t tell my therapist when it happened because there was no reason to ruin his day too. I thought about Nathaniel, the patient whose dementia and prostate problems had made his daughter nearly insane with anxiety. Maybe dementia is a special kind of disease, a projectile disease, designed to particularly torture the loved ones. Who could think that up? Outside my therapist’s window, the setting sun reflected off the buildings along the Chicago River. The light had turned the sky a mystical, otherworldly deep blue, the hypnotizing color of pollution at dusk.

I left the office feeling more relaxed, if not actually better. My therapist was perfect for me. He understood cognitive dissonance because he had it himself. It’s the thinking person’s alternative to pulling the trigger.

 

Each time I visited Mom, I stopped at the grocery store first. I would call from the car and she would give me a list of things to buy. Then I went to the Jewel and bought half the things she needed. Later I went back to the store to get the things she’d forgotten. I did this every week not because her memory deteriorated, although it did, but because I kept hoping that the deterioration was temporary. After Vicki moved in, I only had to make one trip because Vicki would give me a complete list. Usually the list included a box of Depends. Only Vicki could get Mom to wear Depends.

I liked going to suburban grocery stores. Or rather I liked going to a single suburban grocery store. In the city of Chicago sales tax is higher, parking is a nightmare, and getting groceries into my building requires more steps than launching the space shuttle. On the other hand, suburban grocery stores tend to grow freakishly large. They carry every food item made except the ones I usually buy in the city. While shopping for my mother I typically spent an hour walking in circles looking for the same items I bought the week before. This was due to an organizational layout that defied comprehension or memorization. A pharmacy had been attached to the grocery store, further confusing the issue, and the products that I used to know where to find in the grocery section ended up being sold in the pharmacy. Like liquor. Why would wine be located in the pharmacy? It’s not like it’s good for you. Maybe it’s because booze makes you feel better in a way similar to calamine lotion or witch hazel. Sympathy cards are placed next to batteries. Think about it.

It did not bother me to buy Depends at the grocery store. I bought them for my aunt when she was alive, then for my mother, and I’m sure I’ll buy them for my sisters and for myself when the time comes. They are just large sanitary napkins with bad branding.

One sunny spring day I was in the checkout line with lactose-free milk, a box of Raisin Bran, a loaf of multi-grain bread, some boiled ham, Mom’s favorite cheese, and a box of Depends. The adult diapers were the last item to be rung up.

The cashier looked to be about my age. About fifty. I thought of us as Mile Stoners. The term felt like a respectful nod to the drugs of my high school and college days, which I’d thankfully survived and left behind. She passed the Depends over the bar code reader, then leaned across the conveyer belt and placed a warm hand gently on my arm. She looked me squarely in the eye. I saw deep compassion in her lined face and not a trace of humor.

“Would you like me to put these in a brown paper bag for you?” she asked, nodding slightly, girl-to-girl, stoner-to-stoner, eyes never leaving mine.

I realized in that split second that she had decided the Depends were for me. They were mine. I was the leaker. I was fifty and leaking; it showed plainly on my face. In that moment, I knew there was nothing I could say or do to convince this woman of my actual continence—she wouldn’t believe me anyway—and so I simply showed my appreciation for her empathic treatment of my problem. I nodded. “Thank you,” I said. “That would be great.” I laughed all the way to the car.

My mom’s dementia taught me to open my heart again—nothing breeds humility like helplessness. Her helplessness made me humble. Or possibly it was the other way around. But I learned to let people be nice to me. Even if it means they think I’m incontinent. I’m sure one day I will be. So it helps to laugh about it. In fact, laugh whenever possible. It makes more sense than buying a gun.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[i] Cognitive dissonance refers to psychological discomfort resulting from conflicting ideas, beliefs,ååå and values held simultaneously.

Hope For a Cool Pillow – Chapter Two

Two

 

A flurry of activity followed Mom’s death and burial. My sisters and I, along with our adult children, quickly dispensed with her effects. In a matter of days, we divvied up her jewelry, purses, hats, linens, and furniture, keeping most, pitching some, giving much away. We were marvels of efficiency. Mom had liked jewelry, acquiring quite a bit over her ninety-three years. Most was long out of style. What we didn’t want we decided to melt down and make into identical bangle bracelets for ourselves, her four daughters; they would bind us together, as if she hadn’t already.

And then it was over. Mom died on a Wednesday afternoon, the wake was Friday, the funeral Saturday morning. We cleaned out her condo on Saturday and Sunday. By Tuesday, we were mostly finished. Somehow I had been made executor, perhaps when I wasn’t paying attention or because of it. But all of a sudden, the out-of-towners had left town. My sister and brother-in-law drove to Florida. The nieces and nephews returned to their homes out of state. My daughter Bea resumed her coursework; Ruthann flew back to Georgia. And Mom was gone for good. I felt suddenly and irrevocably grown up, as if I’d ridden a catapult into adulthood after playing make believe for thirty years. Despite surviving a life-threatening brain aneurysm and a lethal divorce, raising two kids, and a daily tread through the mine-field of medicine that I called a career, I had finally—at the age of fifty-two—matured. Like many physicians my age and in my line of work, I had a graveyard behind me full of patients who’d died or nearly died while in my care. Esther, Miriam, Nathaniel, Mark, the patients whose names I never knew or couldn’t recall, plus dozens, no hundreds more—they’d taken their toll but they hadn’t done this. This was something else. The woman who stared back at me in the mirror no longer looked or felt like a kid mistakenly trapped inside an adult’s body. I’d become the age on my driver’s license. I read somewhere that when both your parents have passed, there’s nothing to stand between you and death. But that wasn’t it at all. No one had protected me from anything for a long time—I’d behaved like an adult since pre-school. This was different. I felt old and looked tired. Was this what it meant to be an orphan? If so, it was awful.

I took to my bed.

I like the way that sounds: I took to my bed. It implies that I acted with style and flourish, perhaps adorned with a pink satin bed jacket like the long-deceased but memorable Esther. It suggests that I knew what I was doing. But I didn’t. I only know how to tell the tale.

In the weeks after my mother died, I spent all my available time in bed. But I couldn’t sleep. Mostly, I read. I went back to work after a week, and any time of the day or night I was not working, I slipped under the covers. I forgot to eat.   I didn’t pay the bills or answer the phone. I managed to walk and feed my dog Olga because she stuck her snout into my ribcage or under my elbow to remind me that she required some upkeep even if I didn’t. I read and occasionally drifted off. My choice of reading material wasn’t spiritual, escapist, or inspirational. I didn’t read the newspaper or any one of the books that sits in a pile on the unoccupied half of my king-sized bed. I didn’t read the poetry collections of Collins, Auden, Ryan, or Rilke heaped on my bedside table. I didn’t read my stash of New Yorkers, Economists, or New York Times Sunday Magazines from weeks past. Nope, I read Harvard Business School case studies. I did homework.

 ~

I come from a family of storytellers.  I remember my father telling me, on many occasions, that the readings at our Catholic Mass were just metaphors I should not take literally. They were just stories. “Think of what the story means, in the larger sense. Probably none of these things actually happened.”

 

~

Four months before Mom died I had signed up for an Executive Education course called Managing Healthcare Delivery that spanned nine months and required travelling to Boston for three separate weeks. I had enrolled somewhat impulsively near the end of my mother’s inexorable decline from dementia, when I could hardly stand the pain of it anymore: her slow disappearance, the wait for her inevitable demise. Every visit to see her grew more challenging. I couldn’t bear to be with her; I missed her in her presence. How do you watch someone die backward, regressively, from old age into infancy, without wanting to scream out loud at the injustice? It went on forever and grew worse by the day. Vicki made pansit, a traditional Filipino noodle dish, for me most weeks. Comfort food. Sometimes egg rolls too. Mom didn’t eat them. The food worked though. It felt like the kindest thing anyone had ever done for me. And when I could not stand my own conflict – my need to fix things and to flee simultaneously – I thought, incongruously, something is wrong with this picture. I’ve spent a lifetime in medicine—why can’t dying be better than this? And so I looked to Harvard Business School to find the answer. Because—I don’t know—where else do you find it? The answers were not at the hospital or anywhere in medicine that I could see. I had not found them by going to Mass. I’d searched my soul; it offered no clues.

The Harvard course began one month after Mom’s death, which seemed fortuitous but was completely accidental. I’d always been an excellent student so I had to prepare. I did all the required reading in advance. I even bought new highlighters. As part of the preparation, I was required to take the Meyers Briggs[ii] personality test online. I vaguely remembered the test from when my sister Beth was in graduate school in psychology; she was always referring to me with letters. I…N…T…J.

 ~

“Stories are at the center of culture,” Daniel McAdams states in his book The Redemptive Self: Stories Americans Live By.[i] “Stories teach us how to live and what our lives mean. Self and culture come to terms with each other through narrative.”  In his book, McAdams examines how and why we tell the narratives of our lives in the ways that we do. He looks at highly generative adults who, in middle age, attempt to understand why they’ve come to be the people they are and why they believe what they believe. He sees the American experience as being individualistic as opposed to other, particularly Eastern, cultures that value collective ethics. He explores the life story, which he refers to as the “narrative self”, and analyzes its redemptive nature. The typical American story is that of a special sort of childhood, of some hardship overcome, which leads to a desire to achieve, to help others, and to work hard. The redemptive self is a story that links the individual person to a larger culture: who am I in relation to this society I came from?

~

Lying in bed, I slogged my way through the readings for the first of three learning modules, which covered the design and leadership of a successful organization. In a month’s time I read over five hundred pages of material. I learned about the challenges facing the U.S. healthcare delivery system; they seemed insurmountable. The rising costs of healthcare plus increasing demand and increased prevalence of disease due to an aging population, as well as labor shortages, all combined to create an unsustainable burden on our economy. And we weren’t getting the best care for all the money we were spending[iii].

 ~

I remembered my mother telling me about growing up on a farm, and the chickens that continued to run around after her brothers had cut off their heads. Why couldn’t I rid myself of this image?

 ~

I learned about strategy; I learned about cardiac care for the poor in India, cancer care at MD Anderson, orthopedics at Rittenhouse, Duke’s heart failure program, Dana-Farber’s famous chemotherapy overdose of a Boston Globe reporter, and how to redefine health care in terms of value. I liked that they used the case study method to impart these lessons. Weren’t case studies just an elegant form of storytelling?

In the weeks following my mother’s death, I read all the assigned Harvard Business School case studies. But I was easily distracted and got lost in the details. I took Olga for long walks in Lincoln Park then tried to read, again and again. Some paragraphs I read four, five, even six times. In my grief, I highlighted everything. When I arrived in Boston one month later I realized that I had acquired a lot of unrelated information and not much sense of the overall picture. I felt muddled by the minutiae; the situation seemed like an unmitigated disaster, even worse than I’d feared. Nothing made sense.

Stories had always clarified life for me. Narrative gave me the ability to organize my thoughts, put my principles in order. But my parents’ deaths, and the uneasiness I felt with my role as a physician, had defied my usual facility with narrative. Was that why I had come to Boston? I wanted the Harvard faculty to weave this story together with the questions I asked myself as a physician every day. I felt confident it would happen. These were smart people. I would learn something worthwhile. I would learn something that helped make sense of the suffering, the waste, the inequity. These disparate worlds—my personal world of micro-managing my mother’s death from a silent, ubiquitous killer, my other world of hospital-based healthcare, and the theoretical business philosophy of national healthcare—surely were not as far apart as they seemed. I felt positive that in nine months I would come to understand how they fit together. At the very least, I would learn one single thing of practical value. Just one. Something new. That’s all I wanted.

~

Storytelling turns out to be its own form of redemption, as well as a process of discovery and explanation. We use it to illuminate the zigzag nature of our lives and our loves. There’s more than redemption, though. Stories evolve over time, from childhood into adulthood and beyond. Each decade we add meaning, and every achievement adds purpose. Loss brings perspective of a different sort. And as we age, we think about our legacies. I tell my stories in order to make myself understood and to understand the world around me. Story seems intrinsic to understanding our heritage; how else do we make sense of history and our place within it? My father believed in the power of metaphor; he told metaphorical stories. My mother’s stories were more linear. They both would have agreed with McAdams: suffering made them the people they became.

 ~

“It’s not really the body of Christ,” Dad whispered as we made our way to the Communion rail one Sunday morning during my childhood. “It’s a wafer. Just think of it as a symbol. Probably made in New Jersey.”

 

[i] McAdams, Dan P. The Redemptive Self: Stories Americans Live By. New York, NY: Oxford University Press, 2006.

[ii] Meyers Briggs Type Indicator is a personality inventory derived from the psychological types described by Jung which predicts preferences in perception and judgment. Sixteen distinctive personality types are described.

[iii] James Banks et al., “Disease and Disadvantage in the United States and in England,” The Journal of the American Medical Association 295 (17) (May 3, 2006): 2037-2045