I WAS IN PHOENIX PACKING UP to head back to Miami at the end of a business trip when my cell phone rang, and I saw Barbara’s name on the screen. Uh oh, I thought. We were scheduled to talk the next day about my trip to New Bern to take over as local family caregiver while she went on vacation. This unplanned call could only mean bad news.
“We’re at the hospital.” Barbara’s voice broke. “Mom had a bad fall last night, a really bad fall. Dena found her on the floor this morning, and the bed was still made from the day before.”
“What happened?” This was my worst nightmare—Mom stranded on the floor for hours without help.
“I don’t know. She’s really confused. Dena found her naked. Her nightgown was in a heap beside her, and had pee and poop on it. When I got there, Dena was washing her up. We put on her clothes, and I brought her here to the ER.”
“Jesus! Is she hurt? Did she have a stroke?”
“Look, I don’t know. She’s shaky. She couldn’t walk by herself, even with her walker. She has some bruises on her left arm, shoulder and hip, and her left eye is swollen shut. That’s all I can see. They’re doing some tests.”
I decided to cancel my morning meeting, change my ticket, and go straight to New Bern.
“Barb, I think I should come right away.”
“No, we won’t know anything more for a few hours. You can call me this afternoon when you get back to Miami.”
“I don’t know. It sounds really serious, and you seem pretty upset.”
“I was afraid something would happen to ruin my trip,” she sobbed. “I’m furious at her, and at myself. Why didn’t I just insist on getting someone to come in at bedtime?”
“Look,” I said, “This is not your fault. We’ll figure it out. You will have your vacation.”
I felt sick. As soon as I hung up, I got a cold washcloth from the bathroom and put it on the back of my neck. Despite what I told Barbara, I was sure this was our fault.
I broke the rules, and kept my cell phone on for the entire flight to Miami. A few minutes before we landed, I got an email from Barbara with more details.
What I found most frightening was Mom’s confusion. She told Barbara she had been sleeping on the floor on purpose, because she was babysitting a pet bird for the people next door and didn’t want to sleep in their bed. It must have been a weird dream, but she relayed it as if it were fact. She didn’t remember falling.
I got off the plane, grabbed a seat in the gate area, and dialed Barbara’s number. She was still at the hospital. Mom had been admitted for observation and monitoring.
“I had the night help set up for two days from now,” Barbara moaned. “If only I had done it sooner.”
“Stop beating yourself up,” I said, as I mentally flayed myself. “We agreed not to force her. You’re doing a great job, and you are going on vacation. If you and Phil can leave a day later, I’ll come a day earlier, and she’ll be safe in the hospital for the few hours neither of us is close by.”
“But I’ll be in Canada, and it will be hard to reach me.” I could hear her anguish. She and Phil desperately needed this vacation, but Barbara didn’t want to desert Mom.
“It’s okay,” I said, trying to convince myself by reassuring her, “I can handle it. You’re there all the time. This is your break. I’ll take charge.”
Barbara emailed me three pages of notes. On the first page, she detailed the location of the keys to her house, Mom’s purse, and food for Buster, the neighborhood cat who visited daily. On page two, she provided instructions for when and how to put out the trash, how to use the television, and how to check for messages on the phone. Page three was a list of phone numbers for neighbors, doctors, and Mom’s physical therapist, along with addresses for the CVS where Mom got prescriptions and the Urgent Care Center.
I’ll leave a folder on the kitchen counter with my gym card, supermarket discount card, legal papers concerning Mom, and instructions for the espresso maker, she wrote.
She and Phil left Sunday morning, and I arrived in New Bern on Sunday afternoon at around 3 p.m. I drove straight from the Raleigh-Durham airport to the hospital.
I walked down deserted hallways, thinking this must be the quietest hospital on the planet. As I turned the corner toward the elevators, I was relieved to see a pink-jacketed volunteer sitting behind an information desk.
I asked for Eleanor Pratt’s room number. The nice volunteer told me there was no one with that name in the facility. I squinted at her, and my brain searched for an explanation. Is that possible? Could I be in the wrong hospital? If she’s not here, how will I find her? Okay, breathe, think. I can’t call Barbara. Wait—Mom’s legal name is Mary Eleanor Pratt.
“Try Mary Pratt,” I said. Only complete strangers, like the hospital doctors and nurses, ever called her Mary.
“Yes,” said the receptionist, “but are you sure it’s the right person?”
“I’m sure,” I snapped. “She’s my mother. Can I go up?”
What will I do if I have to prove it? I thought. My driver’s license has my name as Melanie Pratt Merriman; will that work? Then I remembered the healthcare proxy forms in my purse. I carried them all the time now.
Before I reached for the documents, the volunteer said, “Room 312.”
I flushed, ashamed that I’d been short with her.
Mom was propped up in bed, dozing, her white hair flat and almost invisible on the pillowcase. The room was semi-darkened, lit only by the TV and slivers of late-afternoon sun coming through yellowed Venetian blinds. I touched her arm and kissed her cheek. She opened her eyes and smiled.
“Mel?” I was so relieved that she knew me. My eyes grew hot.
“How are you doing, Mom?” I smiled back at her.
“Alright, I guess. Where’s Barbara?”
“She left on vacation.” I knew Barbara had told her the night before. “I’ll be here until she gets back.”
“I’m so glad.” Her voice was uncharacteristically soft.
I pulled the Naugahyde visitor’s chair closer to the bed, and talked about my recent business trip until Mom dozed off. She seemed listless and looked banged up, but I was thinking about getting her to her apartment with some home health care. I could cook for her, and help her get her strength back. I went to the nurse’s station to ask how long Mom would be in the hospital, and why she needed to be here.
The only useful thing Mom’s nurse told me was that the doctor would be around to visit sometime the next day; she didn’t know when. I assured her I would be there.
People in scrubs came in and out of the room. One helped Mom to use a bedpan; another checked her blood pressure, pulse, and temperature—all normal. Someone else brought her dinner around 5:00. Mom could hold the fork, but her hand shook. She let me feed her, which I found both alarming and soothing. At last, I was here when she needed me.
I couldn’t get a clear reading on the situation. Based on the bedpan, it seemed that Mom couldn’t—or shouldn’t—get out of bed. Certainly, she seemed weak. But the initial tests hadn’t shown evidence of a stroke or a heart attack. I hated waiting for answers.
At 7:30, Jeopardy came on the television. I stayed for about half the show, then told Mom I was getting tired.
“Is there anything you want? Anything else I can do for you tonight?” I asked her.
“No, no. You must be exhausted. Will you stay at Barb’s?” I was grateful she seemed to be remembering what was going on.
“Yes,” I said, kissing her. “I’ll be back tomorrow, early.”
I stopped at Harris Teeter for a bottle of wine and picked up some veggie lasagna from their prepared foods section. I had planned to buy groceries for the week, but was too tired to think about it. I pulled into Barbara’s driveway and saw Buster, the big orange tomcat, waiting in the carport. I couldn’t wait to sink my face into his fur.
I poured a glass of wine, heated my lasagna in the microwave, and tucked in on the couch with Buster and a movie. After another glass of wine, I fell asleep. At some point, I woke up, pulled up the afghan, set my phone alarm, and went back to sleep, fully clothed.
The next day, Monday, I was at the hospital at 7:45 a.m., cappuccino in hand, ready to be a good companion to Mom. I helped her eat some canned pears and sip some coffee.
“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.