Holding the Net

by Melanie P. Merriman

  I managed to focus for about ten minutes at a time. I checked the clock, and checked it again. Fifteen minutes short of my two-hour goal, I couldn’t think about anything except the time. At 11:45, I asked the volunteer if she could get an update. A few minutes later, she told me Mom was in recovery, and the doctor would be out soon to talk to me.

  “Is she all right?” I asked.

  She rifled through the pages on her clipboard, and then scribbled a check mark on one of them. “They just said she’s in recovery.”

  I told myself that was good news; if anything had happened, she would still be on the table, or on her way to ICU. I watched the clock for another fifteen minutes, and just as I was about to ask for another update, Dr. B. came through the door and scanned the waiting room. I waved him over.

  “She did fine.” He remained standing, so I had to tilt my head up to see his face.

  “Why did it take so long?” I asked, my voice tight.

  “We just got started a little late,” he said, finally sitting in the empty chair beside me. I was relieved, and angry that no one had told me sooner.

  Dr. B. explained that the pacemaker would be monitored remotely. He said something about a bedside base station and sending data to the pacemaker company. I nodded without really understanding.

  “Call my office and make an appointment for two weeks from now, and the technician will give you the equipment and show you how to set it up,” he said.

  Again, I nodded. Did I need to know all this now? I’d look it up later. I made a quick note to call his office for the appointment.

  “Do you have any questions?” Dr. B. asked.

  “I know she’s scheduled to go for rehab, and that Dr. S. will be managing her care. Do you do any kind of follow-up?” My irritation probably showed, so I tried to cover. “I mean, is this the last time we’ll see you?”

  “I’ll stop by tomorrow to be sure everything’s alright. I’m not worried. She did great.” He smiled and looked at his watch.

  I still felt like I was missing key information, but I had no idea what to ask. At this point, I just wanted to see Mom. Dr. B. stood up, signaling that the conversation was over.

  “Thank you,” I said. It was a reflex. I imagined Dr. B adding Mom to his list of “successful” cases.

  After he left, I realized I didn’t know what happened next, or where I was supposed to go. The volunteer told me I should go back to Mom’s room and wait for her there. Before I left the Wi-Fi connection, I emailed Valerie at Seniors Choosing and Diane at McCarthy Court to let them know about the pacemaker and Mom’s upcoming transfer to the nursing home for rehabilitation. I asked Valerie to schedule Dena for a visit to the hospital the next day, and told her we’d also like to have Dena come see Mom in rehab. Dena was Mom’s happiness tonic, and frequent doses seemed like a good idea.

  On my way back to Mom’s room, I picked up a sandwich and some yogurt at the coffee shop. I didn’t want to leave her until the evening.

  I watched Mom even more closely than usual to see how the surgery had affected her. She said she felt fine, but then she asked me why she had a bandage on her chest.

  “That’s where they put in the pacemaker,” I told her.

  “Oh, is it all over, then?”

  “Yes, all over.” I hoped her confusion was a temporary side effect of the sedation.

  She denied any pain, the same way she had done after every fall. I wondered if her pain nerves were wearing out along with the rest of her body, but also suspected they’d given her some good painkillers during or immediately after the procedure. She hadn’t had anything to eat since the night before, so I asked if she was hungry.

  “What time is it? Can I have breakfast?” she asked.

  “It’s almost 1:30. Maybe we could get you an omelet. Would you like that?”

  “That sounds good, and some toast.”

  I checked with the nurse. She said it was all right to give Mom whatever she wanted to eat, so I called the kitchen and ordered a cheese omelet and whole-wheat toast. Mom napped until the food came. With my help, she ate almost half the eggs and a few spoonfuls of my yogurt.

  For the rest of the afternoon, Mom and I settled into the usual hospital routine—various nurses or nursing assistants came in and out of the room to check her vital signs, help her use the bedside commode (she’d graduated from the bedpan), ask about her pain level (still zero), and give her medication. Mom watched TV, nodding off now and then. Not so different from her days at home, I thought, except that she was clearly much more debilitated. I worked in fits and starts, grateful for a straightforward data-sorting task that took enough attention to keep me feeling productive, but didn’t require much brain power. When Mom was awake, we chatted about not much at all.

  At around 3:30, the discharge planner stopped by. She confirmed that Mom would go to the nursing home affiliated with the hospital for rehabilitation. Dr. S. was on staff there.

  “We’ll take her over tomorrow, probably in a wheelchair, as soon as Dr. B. signs her release,” she told me.

  “Are you familiar with the place?” I asked.

  “They have a great rehab program,” she replied.

  I asked the question that seemed to get the best information out of healthcare providers.

  “Would you want your own mother to go there?”

  “Yes, if my mother needed inpatient rehab, I would be fine with having her there.”

  That was good enough for me.

  Mom’s dinner arrived a little after 5:00. The only thing she wanted was the ice cream, and she ate the entire Dixie cup by herself.

  “That was good,” she said. “Can I have more?”

  “Why not?” I answered, laughing. I knew they kept some at the nurse’s station. After the stress of the last several days, I loved seeing her enjoy something, anything.

  Before Mom had finished her second Dixie cup, Dr. S. stopped by to check on her. He told her she looked great, and Mom told him she felt fine. I had to give her credit; even if she wasn’t sure what had happened, she was taking it all in stride.

  “Well, now we need to build up your strength and get you walking again,” he said.

  “I can probably walk,” she said. “I just don’t have my walker.”

  “I’m not so sure, Mom,” I said, trying to telegraph to Dr. S. that she didn’t have a clue. I had seen how hard it was for the nursing aide to get her out of bed to use the bedside commode. Even if the pacemaker worked to prevent temporary blackouts, her wobbly legs would barely support her.

  He seemed to understand perfectly.

  “I want you to have some intensive physical therapy. So tomorrow, we’ll transfer you to the nursing home across the street,” he said.

  I explained that we had talked with the discharge planner, and asked how long he thought Mom would be in rehab.

  “At least a week,” he said. “We’ll have to see how it goes.”

  That meant I needed to start looking into care options for her at McCarthy Court. I decided to wait until Friday, after she was settled at the nursing home.

  Dr. S. squeezed Mom’s hand, and said the next time he saw her would be at the nursing home. He acted as if everything was going to be all right, but I was still on high alert. It occurred to me that he probably took care of lots of people like Mom. This was my first time, and she was my only mother.

  Dr. B. came by early the next day, around 8:30 a.m. I was there, with my cappuccino and a cup of regular coffee for Mom. He and the nurse removed the dressing from Mom’s surgical site.

  “It’s a little red,” he said. “Does it hurt?”

  “No,” she answered.

  “I’d like to keep you here another day, just to make sure everything is all right. Is that alright with you?”

  “I’d rather go home,” Mom answered, “but if you think I need to stay, I’ll stay.”

  “So, everything pushes back a day?” I asked. I wanted to get Mom moving. I’d read that it could take a week
of rehab for an older person to recover from a day in the hospital, and Mom had been in that bed for six days. And honestly, we both needed a change of scenery.

  “Yes, I think that’s best,” he said. “I’ll check in again tomorrow morning, but I don’t expect any problems.”

  He told the nurse to put a clean dressing on the wound, continue the antibiotics, and contact the Discharge Planning Department about the change in orders. I resigned myself to another day in the hospital.

  I wrote an email update for Barbara and Klein, and just as I finished, Dena arrived. I don’t know who was happier to see her—Mom or me. She fussed over Mom, telling her how good she looked. Mom even muted the TV so she could chat.

  “You’ll be home in no time, Miz Pratt,” Dena cooed.

  I told her about the plans for a week or more in the rehab facility, and said I wanted her to visit Mom there.

  “You know I will,” she said. “I’ll do anything I can to help.”

  I took the chance to leave Mom with Dena, and went outside to catch a cell phone signal and send the email to Barbara and Klein. Then I decided to go for a short walk. I was used to working out almost every day, and the lack of exercise had compounded my stress. Gray clouds covered the hot August sun, but even the humid air felt fresh after being cooped up in the hospital for days. Thank goodness Barbara had found Dena.

  I saw the nursing home, and thought I should stop in for a quick check. What would I do if I didn’t like it? What alternative was there? I decided to keep walking and hope for the best.

  When I got back, Mom’s lunch had arrived—the hamburger she’d wanted for days. I heard myself making much too big a fuss over a lukewarm, skinny little burger. Then again, Mom seemed to enjoy it.

  At 2:00, I headed downstairs to the coffee shop to make a business call. The benefit and the burden of being self-employed was that I could—and did—work from anywhere. Having colleagues and clients who dealt with caregiving as part of their work, and often in their personal lives, as well, helped. Compassion was essential in our work, and most of us had an abundance to share.

  On the way back to the room an hour later, I said hello to the discharge planner who was sitting at the nurse’s station.

  “Oh, good,” she said. “I need to talk to you. There’s no bed available at the nursing home where your mother was supposed to go.”

  “I thought it was all set.” I dreaded the thought of another day in the hospital.

  “It was all set for today, but now that she’s not leaving until tomorrow, they’ve given it to someone else.”

  “So, what happens now?” I asked.

  “Well, we have to find a bed somewhere else. There are two other nursing homes. Do you have a preference?”

  “What? I don’t know anything about them. I don’t even live here.” Was she really expecting me to make this decision? I wondered if it was too late to go and see the two options.

  Somehow, the professional part of my brain kicked in. I had been working on quality measures for hospices, and I remembered that similar measures were already in place for nursing homes. Medicare had a website (www.medicare.gov/nursinghomecompare)* where I could look at the quality data for nursing homes anywhere in the U.S. I had never used it, but it was just what I needed.

  “Wait,” I said, “I need to get on the Internet. Then I can choose.”

  I knew I could access the Internet in the surgical waiting room, so I grabbed my computer and found my way back there. I was prepared to argue my way in, but no one stopped me. The website was easy to use—search for nursing homes by zip code, then click on the ones you wanted to compare. There were three in New Bern, and a few others within a twenty-mile radius. I decided to start by comparing the three in New Bern—the one Mom was now shut out of, and the other two. The website provided ratings based upon health inspections, staffing (hours of staff time per patient), and quality measures (like pain management, percentage of patients with bedsores, and appropriate use of medications). One home rated higher than the others on the things that mattered most to me—even higher than the facility where Mom had originally been scheduled to go. Maybe this apparent snafu would work to our advantage.

  I headed back upstairs and told the discharge planner I thought Beechwood Nursing & Rehabilitation Center looked best to me. She confirmed the choice, telling me they had a new rehab wing that was quite nice. I hoped they would have a bed. Ten minutes later, she came to Mom’s room and let me know it was all set. Mom would be transferred to Beechwood via wheelchair van the next day.

  *Medicare also has websites to compare hospitals, physicians, home health services, dialysis facilities, and other healthcare service providers. Much of my work contributed to developing measures for a Medicare hospice comparison website.

  Chapter 16

  I KNEW A LOT ABOUT NURSING HOMES, or “nursing facilities” as they are more often called in healthcare circles, because hospice care is delivered to patients wherever they live—even if they live in a nursing home. I had spent time in nursing facilities in several states, dating back to my first days as a hospice employee, when I studied the delivery of hospice and palliative care to residents.

  I knew that nursing facilities have two primary lines of business: short-stay rehabilitation for post-hospitalization patients who need to regain function after hip or knee replacements, heart attack or other serious illness—and, like Mom, pacemaker insertion—and long-term-care patients who will reside in the nursing facility for the rest of their lives. Medicare pays well for the rehab patients, though only for a limited number of days; nursing facilities want as many rehab patients as they can get. Medicare does not pay for long-term residential care (LTC), and neither does private insurance (except for some long-term-care policies). Most LTC patients have their room and board paid for by Medicaid because, almost always, these are people who do not have enough money to live somewhere else. People with money for assisted living or a board-and-care home (or any other option) will rarely, if ever, choose to live in a nursing facility.

  I knew quite a bit about nursing homes, but I had no idea what it was like to stay in one. I was about to learn a lot more than I ever wanted to know.

  Mom and I arrived at Beechwood on Friday afternoon. I drove over on my own ahead of the wheelchair van and filled out all the paperwork. The first thing I learned was that Mom’s status as a short-stay rehab patient did not guarantee her a room in the bright, newly renovated, nicely furnished private rooms in the rehab wing. The intake coordinator explained that Mom would be in a double room in the long-term-care wing until a rehab bed opened. I asked if we could have a single room. I wanted Mom to have a little more privacy, and the freedom to get up early or turn her television up loud.

  “If it costs more, we’ll pay the extra,” I said.

  “The cost is the same,” the coordinator told me, “but there are no single rooms right now. She’ll probably be moving early next week, as soon as a rehab room opens up. I’ll note that she prefers a single room.”

  I thanked her and signed eight to ten different documents. I wondered how this worked if there were no family members to read and sign everything.

  I met Mom at the curb as the van driver lowered her in her wheel-chair to the sidewalk. Then I followed behind as the coordinator wheeled her down a corridor that could only be described as “institutional”—drab gray/green walls, a gray linoleum floor, and dim fluorescent light. I sniffed—no urine or mold smells, just a vague odor of disinfectant and cafeteria food. The hallway was decorated with several residents in wheelchairs. I noticed two women who looked like sisters, both wearing sweaters in pastel colors that reminded me of sherbet. I smiled at them and they smiled back. I listened to the eerie quiet punctuated by an occasional staccato request from one aide to another, or the sing-song voice of a nurse encouraging someone to take pills the way a mother might coax her child to eat a few more bites of spinach.

  At the end of the hallway, we turned into a room on the left. La
te-afternoon sunlight from a single large window turned the light blue walls a pale, almost soothing, lavender. The room held two hospital-style beds with railings and electronic controls to adjust the height of both the head and the foot; two over-the-bed rolling tables; a small metal chest of drawers; and two closets. Mom’s bed was by the window. Next to the other bed, a woman sat in a wheelchair. She listed to the right, with her elbow on the arm of the chair and her right hand on her forehead.

  “This is Becky,” said the coordinator, gesturing toward the woman in the chair. “And Becky, this is Mary,” she continued. I let that one pass, making a mental note to post a note that Mom was called Eleanor.

  “I’m Melanie,” I said to Becky, “her daughter.”

  “I’m not feeling very well,” said Becky.

  “I’m sorry,” I said. “We’ll try to be quiet.”

  The coordinator pointed out the call button on the bed controller and showed us the bathroom. She explained that rehab patients were expected to come to the dining room for dinner, but Mom could have dinner in her room tonight if she preferred. I told her we would let them know.

  I asked when Mom would have her rehab assessment, and that’s when I learned that Friday was the worst possible day to arrive at a nursing facility. There were no rehab services on the weekends, so Mom would not have a care plan or even be assessed until Monday. That meant we were just biding time for two full days. And then came my next lesson—televisions are not provided in LTC rooms at Beechwood. There are cable outlets, but you have to provide your own set and fill out a form to order and pay for the service yourself. The intake coordinator explained the process—the maintenance crew would hook it up, but I couldn’t put in the request until Monday—and maybe I should wait, because Mom was likely to move to a different room. Now we were looking at a weekend without rehab services or entertainment. If I wanted to make the best of this situation, I had my work cut out for me.

  Mom needed to use the bathroom, so we pushed the call button. Fifteen minutes later, I decided I’d better try to help Mom myself. Thankfully, the nursing aide showed up just as we were trying to figure out how to transfer from the wheelchair to the toilet. I mentioned we had waited a long time.