Читать книгу Hope for a Cool Pillow - Margaret Overton - Страница 9

Four

Mom’s condo was part of a retirement community that 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. Because I didn’t have the patience to take her. 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. 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. Mom survived my neglect. But what did it mean, cognitively? She took a wrong turn, it could happen to anyone.

~

Over thirty years ago I met a woman who had critical lessons to impart about caring for an elderly parent. If I’d been paying attention, I might have learned them. They were all wrapped up in one brief experience, one night long ago. But I got the lessons wrong. It took years before I understood.

The woman stood silhouetted in the soft light coming from the doorway of her father’s hospital room. I was mid-way through my internship year. Though she told me her name, I would forever think of her as the conductor’s daughter; I would always remember her as Nathaniel’s daughter.

It was near midnight and I’d just gotten round to eating dinner: a tuna salad on whole wheat sandwich, the remains of which were room temperature, runny, and stuffed into the back pocket of my scrub pants. Nathaniel’s daughter wore elegant clothes, but her suit hung rumpled, as if she’d been caught in the rain then fallen asleep. Dirt streaked her Ferragamos with their iconic buckles and low heels, the rich woman’s version of a sensible shoe. She stood still, wraith-like, hands clasped. As I approached, I noted the scent of something herbal. Patchouli? Somewhere I’d read that as few as four molecules of a given substance can be perceived by a sensitive nose. My nose is not only sensitive; I can smell disaster at the molecular level.

~

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 recognized that Mom had crossed into a territory beyond which there was no turning back. This was new. 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 dignity, her security against her autonomy. 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. Who could blame her?

~

“There you are, Doctor.” The Ferragamo woman, older but vulnerable somehow, oddly dispossessed, went from still to a flurry of animated motion, as if life had placed her on pause and my arrival pushed her play button. “Thank God you’re here!”

~

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.

I try now to deconstruct those experiences with my mother. I thought of myself as 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 we’re given. The flip side of wishful thinking is to err on the side of caution, which unfortunately means being hamstrung by guilt and doing too much of everything, whether it’s indicated or not. Who wants that kind of medical care?

~

The bedraggled woman grabbed my hand and pulled me into the room where an old man lay on a hospital bed. His eyes were closed; his mouth was open. We call this the “O” sign. Commonly seen en route to the “Q” sign.

“My father’s miserable.” She gestured toward him, still grasping my hand in hers. “I hope you can help him.”

“What seems to be the problem?” Looking down at our joined hands, I felt the moist scratch of her freshly bitten cuticles. I used to bite my cuticles, too. Working one week in a hospital cured me forever. “Hello, sir,” I said to the patient while disengaging from the daughter.

“His name is Nathaniel,” she spoke low and directly into my ear. “Nathaniel Corpisi. You’ve probably heard of him.”

“Hunh,” I said.

“He can’t urinate.”

“Okay. Let me go and grab his chart. I’ll be right back.”

“But Doctor,” her jaw clenched tight, “you are going to do something, aren’t you?” She grabbed me again, both hands on my forearm, twisting. The patchouli, at close range, was potent—way more than four molecules. “You are going to help my daddy! He is a very famous conductor, you know. He’s conducted some of the finest symphony orchestras in the world, traveled everywhere. We spent holidays in Russia, Vienna, London, and he was the visiting conductor for an entire season in Paris. I can’t stand to see him suffer!”

~

Early in the summer of 2009, I contacted a man named Robert who had recently started a caregiver agency. My sister Bonnie and I met 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 Robert’s 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 called 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.

~

I moved to the far side of the Nathaniel’s bed and smiled down at him. It was an automatic smile, a middle-of-the-night, neural reflex smile, disconnected from the muscles of empathy. The conductor did not respond.

I felt his belly, a massively distended bladder, and got a good whiff. Dueling molecules. I turned to the daughter.

“He’ll probably need a catheter placed.”

“Won’t that be painful?” Her eyelid twitched rhythmically.

“He’ll feel much better once his bladder’s emptied,” I said more gently. I made a conscious effort to slow down, to interrupt the momentum that carried me through these call nights and safeguarded precious sleep. “I’ll be right back." I also needed to finish the tuna sandwich before my stomach ate itself.

“But wait!” She moved to the bedside. “Let me show you something!”

She yanked her dad’s blanket down, pulled back his hospital gown. Then, reaching into his crotch, she grabbed his shriveled penis and pulled it straight up, like a fisherman showing off a prize catch.

“You see?” She pointed to the skinny, elongated wiener stretched taut in her hand. I nodded. “I think he’s got a dorsal vein thrombosis!” she said, eyes filling. “Wouldn’t that explain it? His symptoms? I think that’s what it is! A dorsal vein thrombosis. I’ve read about it. See how his penis is purple? See how that purple thing goes up and down there?"

I nodded. I’d never heard of a dorsal vein thrombosis. Even with his dick in the air, the old man didn’t flinch. I stood bobbing my head like a dog on a dashboard.

I felt tired, old and young, brittle and limp. Not cut out for this line of work. The smells. The sadness. I didn’t have a mom or a dad or any relatives who were doctors; I didn’t inherit the trade secrets. I dropped into the chair behind me, and then remembered the tuna.

I stood and felt for my back pocket. Tuna salad juice had seeped through my pants and underwear.

“Why don’t you go ahead and put that down now,” I heard myself say, distantly, the words slow and elongated inside my ears. I gave my head a hard shake and waved vaguely at the old man’s baton. “I’m going to call the urology resident, ‘cause, uh, he has more experience than I do with this sort of thing.” A stream of tuna juice crept slowly down my leg until it reached the top of my right knee sock.

~

Mom, 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—nationwide—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 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.

~

Brisk footsteps announced the midnight arrival of the urology resident, a clean-cut, wholesome, Navy fighter pilot of a doctor. He was a couple years older than I, tougher, wiser, a conservator of charm. He introduced himself to the obtunded conductor and his daughter, then set up the catheter insertion set. He felt Nathaniel’s enormous bladder. He went about the urology business without delay, not engaging the daughter who seemed mesmerized by the practiced economy of his actions. He struggled to feed the yellow rubber catheter into the old man’s member, past the hypertrophied prostate and into the distended bladder. Finally, with this latest insult, Nathaniel stirred, and a moan of pain escaped him. The daughter dropped to her knees beside the bed, clinging to her father’s hand. Tears fell to the front of her blouse. Shudders reverberated through her body; her sobs shook the side rails of the hospital bed, perhaps the hospital itself. Her anguish seemed nothing less than razor-sharp, astonishing. Standing behind her, I shut my eyes against her pain; it reached me anyway. When I looked up, everything had changed: Nathaniel, gorked and up to his eyeballs in piss, appeared to be the lucky one. Not long for this world, a simple rubber catheter would cure his ills. The urology resident would move on to the next enlarged prostate. I would change out of my tuna-scented attire and go home to my family. But Nathaniel’s daughter might not recover so quickly.

~

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. 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.v

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.

~

I stepped forward, placed an arm around the disheveled daughter’s shoulders and pulled her—not gently—back from her dad, his hospital bed, through the door, and into the hallway. The conductor had ceded control of his orchestra.

“I didn’t get your name.” I took Kleenex from a pocket and handed it to her. “Let’s go for a walk until the catheter’s in and your dad is feeling better.”

“Thank you, doctor. My name is Anita. Thank you so much for your help.”

~

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 took me a long time to sort through them all.