Holding the Net

by Melanie P. Merriman

  Chapter 22

  ABOUT A WEEK AFTER ST. PATRICK’S DAY, Mom’s decline steepened. While her spirits stayed high, everything else drooped. Barbara kept me apprised of the changes.

  “Mom lists toward the left, and her left arm (the one on her mastectomy side, the side she fell on last August) can’t support her. We prop her up with pillows.” Barbara’s description on March 20th painted a vivid and sad picture.

  “Should I come up?” I asked.

  “No, I don’t think so,” she replied.

  “Is she eating?”

  “Yes, but someone feeds her, because she has trouble holding a fork. I do it, if I’m there at mealtime.”

  Two days later, on March 22nd, Barbara told me it had become almost impossible to understand anything Mom said.

  “I know,” I said. “I called her yesterday. I asked how she was, told her I loved her, and assumed she said ‘I love you, too.’ I didn’t really understand anything, but I got a brief update from Dena.”

  “I hate to keep asking her to repeat herself,” Barbara groaned. “Sometimes I can figure out what she wants, but not always.”

  “Must be frustrating,” I said.

  “For both of us.”

  “It sounds like her muscles are weakening everywhere, or maybe she’s having little strokes, or both. Maybe I should come up.” I wanted some kind of sign.

  “No, I don’t think so. You’re coming next month. That should be fine.”

  My routine quarterly visit to Mom was planned for April 14th to 18th, 2010, sandwiched between my friend Bill’s yearly visit to our home in Florida and the annual Management and Leadership Conference for the National Hospice and Palliative Care Organization.

  “Mom is starting to have trouble swallowing,” Barbara told me a few days later. “They are going to purée her food.” I heard forced calm in her voice, like she was trying not to frighten me. It frightened me a lot.

  “Barb, this does not sound good. I think I need to come up earlier than planned.”

  “I don’t know what to tell you. I don’t want to make things sound worse than they are. But then again, I don’t want you to be surprised when you get here.”

  With help from the Seasons caregivers, Mom was still getting dressed every day and going to the dining room for meals. She was always delighted to see Barbara and Dena. Once, she asked Barbara how long she was staying in New Bern, making it seem like Mom thought Barbara was me. Barbara joked that I shouldn’t worry about being away, as I was there in spirit. I wondered whether Mom had corrected herself after the fact, but I didn’t ask. If she really was beginning to confuse Barbara with me, I didn’t want to know.

  On Friday, March 26th, Barbara told me that Letty, the Seasons head nurse, had suggested we consider hospice care for Mom.

  “So, she’s letting us know that Mom is getting near the end, right?” I asked.

  “She said we have some time to think about it,” Barbara replied. “But yes, we can all see the change in Mom.”

  Things had been so uncertain for so long—and the uncertainty had been so unnerving—that it was a relief to have Letty give us some clear direction. I was also relieved to be moving into an area in which I felt competent. I knew what to do when it was time for hospice care, and knowing what to do, I got busy.

  “I’ve done a lot of work with The Carolinas Center for Hospice and End of Life Care. I’ll call to see what info they have about hospices in New Bern.”

  It was too late to call The Carolinas Center that Friday, so I checked their website and emailed the names of two hospices to Barbara. She talked to Letty, who identified one of the two as the hospice Seasons typically worked with.

  If they have experience with one of them, I’d go with it, I wrote in my email reply. Everything will be easier if the two agencies have a good working relationship. I suggest calling them sooner rather than later. The hospice nurse will do a thorough assessment, and it could really help us understand what’s going on. If they don’t think Mom needs hospice care, they won’t put her on their service. If hospice is right for her, then the longer she has it, the more she’ll benefit.

  On Monday, I talked with colleagues at The Carolinas Center. The executive director reminded me that they couldn’t really recommend one hospice over another. Then she told me, off the record and as a friend, that she felt either of the two I had named would be a good choice.

  Barbara emailed me after her visit with Mom on Tuesday, March 30th.

  I’m going to call the hospice tomorrow, she wrote. Mom’s no worse than she was last week, but she’s no better, either.

  After she called the hospice, she called me. “I talked to Alice, the hospice administrator,” Barbara told me. “She said they have a long and excellent relationship with Homeplace and Seasons. The nurse will come tomorrow to do the assessment, and I’ll be there.”

  “Good,” I said. “I’m looking Alice up on their website. I like that she’s an RN.”

  “I told her all about you, and that you would be part of all decisions. I also let her know you would be calling her.”

  “Good. Good. I’ll want to talk with the nurse after the assessment, too,” I said. “Maybe you can get her to call me before she leaves.”

  “I’m sorry this is happening so fast, but I think it has to.”

  I was up and pacing around my office. I stopped and leaned over the desk to pet the cat on the windowsill. She tucked her head, rubbing her ear on my hand.

  “No, it’s good. It’s hard, but it’s good. I’ll wait to talk to the nurse, but I’m pretty sure I’m going to come up—not wait until the 14th.” I hoped the nurse would be able to give me a better sense of Mom’s condition, and, though I hated the thought, how long she might live.

  “Whatever you want,” Barbara said. “I don’t know that it’s urgent, but, well, I just don’t know…period.”

  It was nearly 5 p.m., and I felt too keyed up to call Alice. I’d call her in the morning.

  It had been exactly two weeks since Mom’s happy leprechaun photo.

  I waited until 9:30 the next morning to call Alice at the hospice office. I knew how busy mornings could be, as the overnight on-call staff updated the day staff and everybody figured out their schedule of home visits.

  When Alice came on the line, I introduced myself as Barbara’s sister, and reminded her that Mom was scheduled for an assessment that afternoon. She had been expecting my call. I told her about my hospice background. I wanted to talk with her, hospice professional to hospice professional.

  “I know there won’t be a care plan for Mom until after the assessment, but I wanted to make sure everyone knows we understand what’s happening, and that we’re on board with the hospice approach to care,” I said.

  I felt my throat catch as my attempt at detachment failed miserably.

  “I’ll bet this is hard for you,” said Alice.

  Her compassion shattered my reserve. I reached for a tissue. All that knowledge and experience had prepared my brain to know what was happening, but nothing had prepared my heart for the crushing loss.

  “Yes. I know what kinds of hard decisions are coming. But we’re lucky. We know that Mom doesn’t want any extraordinary measures—no tube feeding, nothing like that,” I said. “She’s told us she’s ready to go.”

  “Well, let’s see what Tammy, the nurse, finds later today,” said Alice.

  “Yes, and then please have her call me. I’m trying to decide when to come up to North Carolina.”

  “I’ll do that. And feel free to call me anytime.”

  I hung up, and then let myself cry it out. As her daughter and as Mom’s friend, I was grateful for the hospice professional inside me, but she wasn’t in charge any more.

  I managed to work in short spurts throughout the day, and even conducted a conference call with a client. Someone mentioned it was April Fool’s Day. I thought about sending Barbara an email. Maybe Mom is fooling us, it would say. As I started to write, it didn’t seem
clever anymore. I made a quick trip to the grocery store, and forgot the chicken I wanted for dinner. My thoughts were on what was happening in New Bern, and on when I should get on a plane. I checked flight options on the Internet.

  Alice called me at around 5:30 p.m. They expected to enroll Mom in hospice care the next day, based upon Tammy’s assessment. Barbara had signed the Notice of Election, a form to tell Medicare that Mom wanted to “elect” the hospice benefit. Medicare pays for hospice care if the patient agrees to give up their regular hospital benefits (meaning no more visits to the hospital, which was fine with us) and accept non-curative, palliative care only. The other requirement was that two doctors, one of whom could be the hospice physician, must certify that the patient has six months or less to live if their illness follows the expected course. We knew Dr. S. would sign the form, and that Mom would be admitted the next day.

  “Her diagnosis is Alzheimer’s dementia,” Alice told me.

  “What? Really?” I was quiet as I quickly ran through some hospice regulations in my mind. “I’m surprised,” I said, “but I understand you have to have something—something that meets the required guidelines.”

  When a person becomes a hospice patient, the hospice must identify the “terminal diagnosis,” and they need documentation from the patient’s medical record that supports that diagnosis in order to meet Medicare regulations and receive payments. For someone like Mom, who didn’t have any of the usual diseases that cause death—cancer, heart failure, lung disease, liver or kidney failure—but who did have memory issues and difficulty swallowing, the diagnosis they could best support was “Alzheimer’s and related dementias.”

  I didn’t see Mom as an end-stage dementia patient. She still knew us and communicated her thoughts and desires, even though she had trouble speaking. For me, she was still Mom deep inside, just old and wearing out, body and mind.

  If it had been up to me, Mom’s terminal diagnosis would have been “failure to thrive,” a term typically applied to infants, or “debility, unspecified.” (Both of these official diagnoses are found in the International Classification of Diseases [ICD-9], a standardized diagnostic tool maintained by the World Health Organization and used by healthcare providers and payers across the United States.) But neither of these diagnoses fit Medicare criteria for hospice.

  Alice shared more information from Mom’s assessment, and filled me in on the initial care plan. Tammy would be the primary nurse, and would visit three times a week. A nursing assistant would be assigned to help with personal care, and would coordinate her visits with Seasons. Alice told me Mom would also be visited by the social worker and the chaplain, who would decide after their assessments about additional visits.

  “Mom will tell the chaplain she’s an atheist,” I warned Alice. “I don’t understand her views, but I accept them.”

  “Well, Annie, our chaplain, will be available all the same,” she said.

  “What about her prognosis?” I asked.

  “Well, we never know, of course. She seems fairly stable right now,” Alice replied.

  Something about the way she said “stable” conjured a mental picture of Mom balanced on the edge of the bed—perfectly still, but in danger of falling. Now I was sure; I had to go to New Bern and see for myself just how stable—or not—she was.

  I called my friend Bill to talk about his planned trip to Miami.

  “I have to go up,” I told him. “But you could come down anyway, and get some sun. My mother might be fine, and then I could come back in a couple of days and still spend the weekend with you. But I won’t know until I get there.”

  “Look, I’d rather postpone until you’re around. I’ve got tons of work, anyway,” Bill said. “I’m just so sorry this is happening.”

  I called Barbara and told her I would be coming up on Tuesday.

  “I’ll fly into Raleigh-Durham and drive down. I should be there by 4:00 p.m.”

  “Mom and I will both be glad to see you,” Barbara said. “Also, I sent a memo to Homeplace with the information about Mom’s contract with the National Cremation Society.”

  “Okay, but don’t you think you’ll be there? Can’t they call you if something happens?”

  “I guess. I don’t know. I was thinking that the call would have to come from a healthcare provider.”

  “Yeah, that makes sense. Anyway, it’s good to make sure everyone has the info—that we’re all on the same page.”

  “One weird thing,” Barbara continued. “Mom’s been really thirsty, asking for water all the time—but she has trouble swallowing it, and kind of chokes and coughs.”

  “I’ll check with my hospice doc buddies. Maybe they’ve seen this before.”

  “Tammy, the hospice nurse, is going to bring some thickener that we can put into any liquid. Apparently, that makes it go down the right way and eliminates choking.”

  “Never heard of it, but I trust the hospice. Still, I’m going to email Ira.”

  Dr. Ira Byock, a longtime colleague, and I wrote the Missoula-VITAS Quality of Life Index together. He has published several books on end-of-life care, and remains one of the best hospice docs ever. As I typed an email to him, I described Mom—failing in all activities of daily living (ADLs), unable to stand alone even while holding a grab bar, eyes closed most of the time (though not sleeping), and often seeming to drift. Then I sat back in my chair, shocked at the truthfulness of the image I’d conjured.

  I asked about Mom’s thirst. Had he seen this before? Did he have any suggestions?

  Ira wrote back within the hour. He said Mom might be “dry,” meaning, I suppose, dehydrated. He recommended a simple work-up with blood tests, if she seemed uncomfortable. Barbara said Mom did not seem uncomfortable, just thirsty, and with the thickener, she was able to swallow better. She had even enjoyed a cup of coffee for the first time in days.

  Barbara and I agreed to avoid any kind of testing unless it would change the plan for her care or medications. We decided to tell everyone to give her as much as she wanted to drink.

  The day before my trip, Barbara sent an email.

  I just talked to Dena about her afternoon with Mom, she wrote. Despite the yellow pine pollen that is now the scourge of New Bern, she and Mom spent a good part of the time outside. Mom drank two big glasses of thickened water over the course of an hour or so. Dena says she talked to Mom a lot (no surprise), and Mom tried to talk back, but Dena could only understand about a third of what she said. At least once, she told Dena she was happy at Seasons, and Dena said she smiled a few times. All in all, an encouraging report, I think.

  The next morning, Tuesday, April 6th, Klein drove me to Miami International Airport. I didn’t want to park my car in the airport garage, as had been my custom. I wasn’t sure how long I would be gone.

  Chapter 23

  I DIDN’T STOP ONCE ON THE DRIVE from Raleigh-Durham airport to New Bern. I was surprised how quickly I ticked off my usual checkpoints—Smithfield, Goldsboro, Kinston. One minute I thought I might be too late, and that Barbara would call and tell me Mom had died. The next, I thought Mom would be fine, and I’d be heading back home in a day or so.

  As many times as I’d been to New Bern, I always got confused about which way to turn at the top of the exit ramp. This time, I turned right—the correct way for Barbara’s house—without a thought.

  Barbara met me in the driveway with a big hug.

  “How are you doing?” she asked.

  “I’m fine. I just want to see Mom.”

  “All right, let’s put your suitcase in the house and go right over. Do you need a snack or anything?”

  “No, let’s go.”

  As we drove to Homeplace, Barbara told me that the hospice had started Mom on a low dose of Lortab, a form of codeine, for overall comfort.

  “Mom’s heart rate was elevated this morning. Tammy, the hospice nurse, said she might be in some kind of distress, but Mom denied any pain, even though Tammy asked the question all different ways.
”

  “Did you see her after she took it? It’s an opioid, a narcotic, so it can make her sleepy until she gets used to it.”

  “I don’t know if they’ve started it yet. Tammy said they were prescribing a low dose, but on a regular schedule, and they’ll adjust it to keep her comfortable but awake. And honestly, she’s often kind of drowsy anyway. She’s really changed since you last saw her.”

  “I know. Don’t worry. I get it.”

  And then we were there, in Mom’s room. She looked up from her wheelchair perch and smiled at me. I wrapped her in a big hug.

  “I’m so glad to see you,” I whispered to her.

  “Me too,” she whispered back, though it came out as “misha.”

  Mom was in bad shape, but I was neither surprised nor alarmed. Barbara had prepared me well. Mom’s left arm was swollen and useless. Her left fingers were permanently bent inward to meet her palm. Her right arm and hand trembled with any effort, and calmed only when held or resting on the arm of her chair. Mom’s eyes searched my face, and while she looked somewhat confused, there was no doubt she knew me and was happy to see me. I was filled with a melting tenderness for Mom, and for Barbara.

  It turned out Mom hadn’t been whispering to me. As she tried to say something else, I realized her speech was nearly inaudible, and she could barely form words. With difficulty, we understood her to ask if we were going to Barbara’s house for dinner, as was customary when I visited. I looked at Barbara, silently asking if such a thing was even possible.

  “We were thinking we’d do that tomorrow night,” Barbara said to Mom. “But we’ll stay and keep you company here while you have dinner.”

  As if on cue, one of the nursing aides came to get her for the evening meal. Everyone acted as if Mom was still her old self, though clearly she was not. She didn’t complain or seem distressed, so I joined in. She was still among the living; we would treat her as such.

  We wheeled Mom to the dining room, and talked with others at the table until Mom’s plate of pureed food arrived. She accepted a few bites of a spinach and egg mixture that I offered on a spoon. She ate without any apparent interest or enjoyment.