Holding the Net

by Melanie P. Merriman

  “How is it?” I asked, pointing to the coffee.

  “Terrible,” she replied, “and cold.”

  I offered her some of my cappuccino and handed her a piece of toast.

  Looking through all the papers on the bedside table, I found a menu.

  “Hey, Mom,” I said, “It says you can order anything you want for your meals. What would you like for lunch?”

  “Can I have a hamburger?”

  I called to place the order, and was told patients on the cardiac floor were not allowed to have red meat. Cardiac floor? I thought. Is there something wrong with her heart? Mom agreed to a turkey sandwich. Dietary restrictions for a ninety-three-year-old seemed ridiculous to me. I added a note about it to my growing list of questions for the doctor.

  Mom and I watched one of the morning shows for a while. Then she wanted to use the bathroom. I rang for the nurse, who said she’d send someone to help with the bedpan.

  “Why isn’t she allowed to get up?” I asked. “I would think she needs to keep moving.”

  “The orders say she is confined to bed.” Something else to ask the doctor about.

  I pulled out my computer to finish analyzing some health-care-quality data I had collected for a client, and smiled at the irony.

  “Mom, I’m going to do some work while we wait for the doctor. Okay?”

  “Sure, sure. I’m just happy you’re here,” she said, still staring at the TV.

  At around 10:00 a.m., I went out to the nurses’ station to ask when the doctor was expected. No one knew.

  Lunch arrived, and it was easier for Mom to eat a sandwich without help than to manage a fork. She insisted I eat half the sandwich and half the apple. It was just as well. I didn’t dare leave to get some food until I talked to the doctor.

  At 4:00 p.m., Mom’s primary care physician, Dr. S., arrived. Mom greeted him warmly, as if he were a welcome visitor in her home. I almost expected her to offer him some coffee, or a snack. I had met him once before, but I reintroduced myself and launched into my questions.

  “Why is she on the cardiac floor?” I asked.

  “We’re monitoring her heart to see if she is having episodes of missed heartbeats that could affect blood flow to the brain. It’s possible her falls are being caused by mini-blackouts.”

  She had been falling for over a year, so I wondered why this hadn’t been done before, but I didn’t ask. I didn’t want to seem aggressive or accusing.

  “If that’s the case, what can be done?”

  “The cardiologist will come by later,” he said. “He’ll probably want to put in a pacemaker.”

  “A pacemaker?” Had I heard him correctly? He seemed so calm, but I felt like the whole room was spinning. I had been prepared to drive this conversation with my questions about how long she needed to be hospitalized, possible changes to her medications, and follow-up care. Now I felt like I’d been tossed into the back seat with no view out the windshield. I didn’t even know where to start the discussion.

  “Will that really help?” I asked.

  “Let’s see what the cardiologist says, then we can talk some more.”

  “You said he’s coming today?” I asked, surprised and worried that there was not much more of the day ahead of us.

  “Yes,” Dr. S. replied. He turned and took Mom’s hand. “I’ll be back tomorrow.”

  “Thank you,” I said, wondering what I was grateful for.

  Then, right after he left, I remembered about the dietary restrictions. I hurried after him.

  “Surely, at this point in her life, she can eat whatever she wants—right?” I asked.

  He agreed, and said he would change the orders.

  Dr. B., the cardiologist, showed up at 6:30, after Mom’s dinner. She was drowsy, but gave him a big smile. His Southern gentleman’s drawl sounded phony. He sat on Mom’s bed and took her hand. It struck me as too familiar, too fast. I wanted to trust him, but I needed information, not empty gestures.

  He showed us the tracing from the heart monitor. It was easy for me to see that Mom’s heart was skipping a beat or two, much too often. Dr. B. did not suggest this might be normal for a ninety-three-year-old heart.

  “I think we should insert a pacemaker,” he said. “I’ve ordered an echocardiogram for tomorrow, and I’d like to do the surgery on Wednesday.”

  Mom said, “No, I don’t want it.”

  They were both way ahead of me. No decisions without facts. I asked why he thought she needed a pacemaker. He explained that it might help prevent another fall.

  “Because it would improve blood flow to her brain?” I ask. “Yes,” he said. “The skipped beats can cause dizziness, or even fainting.”

  “But she’s not fainting.”

  “Still, I think this could help.”

  Mom was quiet. Neither Dr. B. nor I asked her why she didn’t want the pacemaker.

  I told Dr. B. we would need some time to decide, and he promised to come back the next day and answer any questions we had.

  “Don’t worry,” he said, patting Mom’s hand, “I do these procedures often, and on people even older than you.”

  And then he was gone. I made a note to ask him if those procedures he mentioned had been successful.

  I helped Mom brush her teeth, and stayed with her until she was asleep. As soon as I was in the car, I called Barbara’s cell phone. I had no idea whether or when she might get the message. Then I called Klein to tell him about the pacemaker.

  “I feel blindsided,” I said. “I need to get on the Internet and try to learn more about pacemakers. Does this count as prolonging her death, which I know she doesn’t want, or is it going to improve her life?”

  “I don’t know,” he replied, “but it sounds like that’s the right question.”

  Everything I found on the Internet suggested that pacemaker insertion was safe, even for the elderly. The procedure is done under “twilight sedation”—like they use for colonoscopies—not full-blown anesthesia, which I knew to be more dangerous. I read comments from people whose parent had received a pacemaker. Some had seen improvements in function; some hadn’t. At least there were no horror stories.

  Mom had always been clear about not wanting to artificially prolong her life. For more than a year, she’d told us she was “ready to go,” but didn’t seem close to death. And if she was going to live a year or more, I wanted to do anything that would make that time the best it could be. Even minor surgery could be traumatic, and I had seen how a simple cold could hit Mom hard. Would the surgery shorten her life? I was pretty sure I could live with that if the shorter time was better time—better than it had been with all these falls. What if she died on the table? I would feel responsible. How could I not? But I just didn’t think it would happen.

  I wrote out a new list of questions. I needed to confirm that we were talking about a pacemaker that would simply regulate her heartbeat, not a defibrillator that would shock her back to life if her heart stopped. I wanted to be sure she could die naturally with the pacemaker in place. I wanted promises that if anything went wrong during the surgery, they would let her go; that her “do not resuscitate” request would be honored. Most of all, I wanted assurances that with the pacemaker, she would feel better, have more energy, and fall less often.

  I crawled into bed at midnight. I lay in bed doing yogic breathing, but my mind wouldn’t quiet. After an hour or so, I got up and emailed two colleagues who were also friends—Ira, the palliative care physician with whom I’d co-authored the quality of life index, and True, a nurse and hospice expert—asking for advice. They were perhaps the wisest and most soulful healthcare professionals I knew.

  At close to 2 a.m., I wrote up a plan for my conversation with Mom. I created talking points the way I would for a business presentation:

  • Assure Mom that this is her decision, and that I will support her no matter what she wants;

  • Acknowledge understanding that she does not want “heroics;”

 
• Lay out the positives—simple surgery, possible improvement in thinking, fewer falls or no falls;

  • Lay out the negatives—surgery and recovery;

  • Ask about her questions/concerns.

  Unable to think of anything else I could do for the moment, I finally slept for a few hours.

  Both Ira and True sent replies by 8 a.m. Both offered condolences and support. Ira assured me that Mom could die a natural death, even by heart attack, with the pacemaker in place. True said pacemakers are very common even in older people, and commiserated with the dilemma of the adult child trying to do what’s right for the parent. Both said they were confident I would make the right decision. Was there a right decision? I saw two choices: the harder one, not to agree to the pacemaker; and the easier one, to let the doctors do what they wanted. Neither one felt right.

  I greeted Mom around at 8:30 with some freshly-sliced bananas and strawberries I had fixed before I left Barbara’s. While she finished eating, I sat on the bed and started the discussion. “Mom, we need to decide about the pacemaker. You said you don’t want it, but what if it could help with your falls?”

  “I don’t know,” she said and closed her eyes. “It’s almost too hard to think about it.”

  “Are you scared?” I asked.

  “No. I just don’t understand it all.”

  What had I been thinking? She couldn’t make this decision. And really, would I have trusted any decision she made? She was the one who didn’t think she needed evening care. I had to accept that the choice really was in my hands—and my hands were shaking. I wished Barbara would call.

  We sat in the room all day, Mom watching TV with eyes half-closed, and me trying to focus on analyzing survey comments. Maybe it looked like I was working, but all I was really doing was waiting for that cardiologist, Dr. B. I made sure the nurses knew that I needed to talk with him.

  At around 10 a.m., I looked up from the computer just as Dena walked into the room.

  “Hey, Miz Pratt. I had to come see you, ’cause I missed you too much,” Dena sang, a smile covering her face. Mom lit up. Why hadn’t I thought to call her? She must have been worried.

  “Dena!” I jumped up and gave her a hug. “What a wonderful surprise.”

  The three of us visited for a while, and I filled Dena in on the plan for surgery the next day. She didn’t have a cell phone, so I gave her my phone number and told her to call me anytime.

  “Now, don’t you worry,” she said to Mom. “I know you’re gonna do just fine. And I’m gonna pray for you.”

  “Can you stay for a few minutes while I go outside to make a call?” I asked Dena.

  “Sure,” she said, “You take your time.”

  When I got back, I asked her to visit again as soon as she could. I told her I would call Seniors Choosing to set it up—my subtle way of letting her know she would be paid. She was “family,” but I was pretty sure she couldn’t afford to give away too much of her time.

  Right after Mom’s lunch, the hospital discharge planner stopped by the room. She told me Mom was scheduled for a pacemaker implant the next morning. I told her it would not be decided until we saw the doctor.

  “Well, we’ve arranged for her to be discharged to the rehab center on Thursday,” she said.

  Mom hadn’t even had the surgery yet, and the hospital was already planning for her discharge. This was a part of healthcare I understood from my hospice work. Mom’s “case” would be given a code (from the International Statistical Classification of Diseases and Related Health Problems, or ICD-9) that would determine the amount Medicare would pay the hospital. The payment would be based upon a predetermined number of days, plus specific amounts for “medically necessary” procedures. The discharge planner was responsible for making sure Mom would leave the hospital within the timeframe covered by Medicare, and not stay a moment longer.

  None of this bothered me. In fact, I was relieved that Mom was in line to go for rehabilitation. After five days in bed, and with what I had seen of her debility, she would need it, whether she received a pacemaker or not.

  “Will she go for rehab even if she doesn’t have the surgery? I mean, she can’t walk, at this point. I believe Medicare will pay for a certain period of rehab, right?” I was feeling pretty good about my Medicare knowledge—thanks to my years in hospice.

  “You would need an order from the doctor indicating that she needs skilled nursing care, but yes, I am pretty sure she would be eligible,” the planner replied. We agreed to talk again the next day, when the decision about the pacemaker had been made.

  Around 3 p.m., Barbara called, and I brought her up to date about what I knew, fuming about not having seen the doctor yet.

  “I am leaning toward doing it. It just doesn’t seem like she has much of a life right now. If the pacemaker can make it even a little bit better....” My thoughts trailed off.

  “I’m worried about putting her through surgery,” said Barbara. “I worried about it, too, but it’s fairly minor—and she won’t be under general anesthesia.”

  I could tell Barbara was against the surgery, and I wanted to respect her position. I didn’t want to act like the out-of-touch, outof-town family member who swoops in and undermines the hardworking day-to-day caregiver. I wasn’t out of touch, though, and I had thought this through. I told Barbara I didn’t expect a miracle.

  “I know what we get if we don’t do it—she’ll be the same,” I said. “Even with more help, she’ll continue to fall, and probably end up back here. At least with the pacemaker, there’s some potential for improvement.”

  “Look, Mel, I’ll support whatever decision you make. I agree that it probably can’t hurt. I just don’t have much hope it will make her better,” Barbara said.

  “Maybe it will slow her decline.”

  It would be some time yet before I understood that once decline has become irreversible, faster is better.

  After I talked with Barbara, I left the room to get a snack. I was gone ten minutes. When I returned, a nurse I had not yet met told me that Dr. B. had visited, and confirmed that Mom was scheduled for pacemaker placement the following morning.

  “No,” I blurted out. “He assured us we would have a chance to ask questions. Is he coming back?” I fought back frustration and tears as she told me he had left the hospital for the evening.

  “Please,” I said. “Can you get him on the phone? I have to talk to him.”

  Thirty minutes later, Dr. B. walked into the room. I was grateful, relieved, and furious that he had been planning to go ahead without talking to me. I wanted to appear confident and commanding, but my voice shook with emotion as I asked my questions.

  His answers were glib. “She’ll be fine. I do this all the time. Don’t worry.”

  I saw no sign that he had thought about Mom as a unique individual. She was just another place to put a pacemaker.

  “What if we decide not to do it?” I asked.

  “There’s no reason not to,” he replied.

  He seemed to have no doubts, while I had nothing but.

  I wanted to scream at him. Help me decide what’s best for her—this special person to whom I owe so much. She’s ninety-three and confused, but she said she did not want it. Can’t you see how hard this is?

  Instead, I sank onto the bed and took Mom’s hand. My own weakness surprised and frightened me. I wasn’t strong enough or brave enough to fight his complete certainty. And I wasn’t ready to act as if her life were over.

  “Mom, I think we should go ahead with the pacemaker. Is that okay?”

  “Yes, honey. If you think it’s a good idea, let’s do it.”

  I knew her agreement was hollow. Still, I allowed myself a moment of reprieve.

  Chapter 15

  THE SURGERY WAS SCHEDULED FOR 10:00 A.M. The nurse came to Mom’s room around 9:00, followed by an orderly pushing a gurney. I gathered up my purse and computer while they prepared Mom for transport, and then we all made our way to the surgical ar
ea. At the big double doors, the orderly pointed the way to the waiting area, and told me to check in with the volunteers.

  “We’ll take good care of her,” he said.

  I leaned over the bed and gave Mom the best hug I could.

  “I love you, Mom. I’ll see you when you’re done.” I believed she’d come through okay, but who could know?

  “Don’t worry, honey, I’ll be fine.” Mom was nothing if not a trouper. I remembered how she’d joked with the orderly who had wheeled her into the room where Daddy, Barbara, and I were waiting after her mastectomy.

  “What kind of surgery did you have?” the orderly had asked her.

  “They cut my boob off,” she replied with a smile.

  With the now-stringent healthcare privacy laws, you never heard that kind of friendly banter anymore.

  The surgical waiting room in the New Bern hospital was ringed with hard plastic straight-backed chairs facing the center of the room. I blinked as my eyes adjusted to the harsh lighting. The volunteer sitting at a large metal desk in the center of the room asked for my name and Mom’s name. I reminded myself to refer to Mom as Mary Pratt. The volunteer handed me an information sheet and pointed to the single-serve coffeemaker on an adjacent table.

  “We’ll pass on any updates we get from the surgical suite,” she said. “If you have questions, just let me know.”

  “Can I use my cell phone?” I asked.

  “No. We have a phone, but it’s only for local calls,” she replied.

  Surprisingly, there was a Wi-Fi connection—the first and only one I’d encountered at the hospital. I decided to work through my email. For the last few days, I’d limited myself to high-level triage on incoming messages, letting the less urgent ones pile up. Now I had almost two hundred emails in my inbox. I looked at the clock: 9:30 a.m. If they started Mom’s surgery on time, at 10 a.m., and if it took an hour, as I’d been told, then I wouldn’t hear anything until 11:00 or so—about an hour and a half away. I told myself to wait two hours before starting to worry, and dove into the messages from the outside world.