THE NEXT MORNING, I walked through the door to Seasons at 7:30 a.m. Mom wasn’t in her room. Maybe she’s feeling better, I thought. I hoped.
Sure enough, I found her up and dressed in the dining room. But she wasn’t at her usual table. She sat in her wheelchair, by herself, away from the other residents. Instead of a plate of breakfast, a glass filled with about two ounces of pink liquid rested on the table beside her.
I greeted her with a smile and leaned in for a hug. As she lifted pale blue eyes to meet mine, I saw something unfamiliar—sadness, or perhaps alarm.
“How are you feeling?” I asked her.
She mumbled a reply that I understood as, “Not so good.”
As I hugged her, she was, for a moment, completely intelligible. “I think I’m dying.”
“Oh, Mom!” I hugged her tighter. “I think so, too. But don’t worry. Barbara and I are here, and everything is going to be okay.”
The truth had slipped out naturally, riding on a wave of extraordinary calm. Later I would wonder if all my hospice experience had led to this one moment.
“I think I’ll take Mom back to her room,” I said to the nurse, who was administering medications to the residents at other tables. “She’s not feeling well.”
“Well, she needs to have that medicine to relieve any pain she might be feeling.” The nurse pointed to the pink liquid, Mom’s Lortab.
I promised to help her drink it all.
“I’ll come with you,” said the nurse. “We thought she might perk up if we brought her to the dining room, but I guess not.”
The nurse sat with us for nearly ten minutes, gently lifting the glass of pink liquid to Mom’s lips again and again. Where do they find these people? I wondered, and thanked God for bringing us to Seasons.
After the nurse left, Mom dozed in her chair.
“Help.” Each exhale carried the whispered cry, the very sound of her breath.
I wondered what she was feeling and seeing behind closed eyes.
I tried to console her with hugs, soothing words, and gentle rocking. I gave her water whenever she woke and asked for it.
Later in the morning, Barbara relieved me so I could be on a conference call that I should have cancelled. I was back in the room by 11:00 a.m. Mom was napping on the bed, covered by her afghan. No need to use the side rails any longer. We wouldn’t be leaving her alone.
“Tammy, the hospice nurse, was here while you were gone,” Barbara told me. “She said Mom showed nonverbal signs of pain, or at least discomfort, and she got an order for a low dose of morphine.”
“Instead of the Lortab, right?” I asked.
“Yes. I guess she thinks the morphine will work better. And she left these.”
Barbara picked up a bag of little pink sponges, each stuck on a cardboard stick like a lollipop. I recognized them—mouth swabs to keep Mom’s mouth moist, if and when she stopped drinking. We were already smoothing ChapStick onto her dry, flaking lips.
I sent Barbara home to get some lunch, and a few minutes after she left, Mom woke up. I carefully took her to the bathroom, noting how much weaker she was, and then got her settled in her armchair.
“Dena will be coming in a little while,” I told Mom, taking her hand.
Just as I turned on the television, Tammy walked in.
“I’m back,” she sang. “And I brought you a milkshake.”
I almost laughed out loud. Now I was on the receiving end of the hospice milkshake legend. When I had been in training for my first hospice job, we were told about hospice founders who would go out at 3:00 a.m. to fulfill a patient’s request for a milkshake. The only appropriate question, we were taught, was “What flavor?” Mom hadn’t asked for a milkshake, but Tammy knew Mom hadn’t eaten, and hoped she’d accept the frozen treat.
Tammy offered Mom a spoonful. Mom shook her head, and then reluctantly sipped from the spoon.
“Mom, do you want some more?” I asked.
“Muh,” she answered.
“That means no,” I translated for Tammy.
“Try another spoonful,” Tammy cajoled.
Mom again accepted it reluctantly and swallowed.
“No more,” Mom said. And though it was garbled, both Tammy and I heard her clearly.
“Thanks anyway,” I said to Tammy.
“It’s okay,” Tammy said. “Just make sure she gets the morphine every hour. It will keep her comfortable, but it’s important that she gets it regularly.”
Dena came at 12:30, bringing her usual breath of fresh air. We were all relying on Mom’s third daughter to help keep our spirits up. I left the two of them alone, and took a break to eat something and take care of a few emails.
By mid-afternoon, Barbara and I were back in Mom’s room. Mom had laid down again, fully dressed, to take a nap. She slept on and off. She was restless, as if being tugged between this life and the next. More than once, Mom had said she was ready to go, but some part of her seemed to want to stay.
“Please help,” she breathed, or sometimes, “Please, God, help.”
No atheists in foxholes, I thought.
Barbara and I took turns rocking her and reading to her—sometimes from The No. 1 Ladies’ Detective Agency, which I had pulled off her shelf to pass the time and calm my thoughts, or Now We Are Six, children’s poems by A.A. Milne that Mom had read to us.
“We love you, Mom. We’re here to help you,” I whispered. “Everything will be all right. You can let go.”
Every hour, we got the Seasons staff to give her the prescribed morphine, and asked for reassurance that Mom was not in pain. I had learned in my hospice training that involuntary vocalizations were normal at this stage of dying, but needed to hear it all again. Training was abstract. This was real.
Mom was still asking for water. We would either crank up the head of the bed and give her some thickened water using the straw, or, more and more often, we offered one of the pink sponges soaked in water. She sucked them greedily, and we rewet them two, three, four times.
Around 4:00 p.m., Barbara walked Dena out to her car. Mom was curled up facing the wall. I was hugging her, almost laying in the bed with her. She opened her eyes and looked up at the pastel-colored photo of Barbara and me as children.
“Beautiful girls,” she murmured.
“Love you, Mom,” I whispered, my eyes hot.
Over the next hour, Mom seemed to grow more agitated, waking more often and drawing her legs up to her abdomen. She looked as if she were hurting.
“I don’t think the morphine’s working,” I said to Barbara at around 5:00 p.m.
Barbara talked to Letty. It turned out a higher morphine dose had been ordered. I called the pharmacy to find out when the medicine would be delivered, and found out they had not received the prescription. I was frantic. I got the hospice on-call nurse on the phone.
“My mother seems pretty uncomfortable. She’s supposed to get a higher dose of morphine, but the pharmacy doesn’t have the prescription,” I explained.
“Don’t worry,” she said. “I’ll check into it and call you right back.”
Fifteen minutes later, she called to tell me the prescription had been faxed to the pharmacy, and the morphine would be delivered by 6:00 p.m. If a mistake had been made, they’d recovered quickly. I felt relieved. No wonder all the research I had done as a consultant for hospices showed such high satisfaction ratings!
Even after the higher morphine dose at 6:00, Mom was still restless, more frequently moaning or calling for help. Barbara called the hospice and asked to have the nurse visit. I offered Mom some water. She refused, but sucked hungrily on one of the wet sponges.
Thirty minutes later, Leona, the on-call nurse, arrived. Where Tammy was lithe and perky, Leona was comfortably rounded and calming.
“I think your Mom is going through what we call a ‘transition’,” Leona explained. “We’ll keep giving her a little additional morphine until she is comfortable.”
Then Tammy arrived, and the two nurses worked together to gently get Mom into her nightgown, making sure she was clean and dry. Still, almost an hour after Leona had arrived, Mom was not settling down.
“We’re going to give her a little Ativan,” Leona said. “It’s for anxiety.”
“I know it well,” Barbara said. “I take it myself when I need it.” Tammy broke the pill in half and placed one piece on each side of Mom’s tongue, where it would dissolve slowly. Over the next twenty minutes, Mom settled and fell asleep. It was 8:00 p.m.
Barbara and I decided we would take turns staying overnight. “I’ll stay tonight.” I knew I wouldn’t be able to sleep anywhere else.
“Okay. I’ll bring you some dinner. What do you want?” Barbara got up to leave.
“Just a sandwich, and maybe a cookie.”
Around 9:00 p.m., Barbara dropped off a paper bag filled with goodies from her kitchen, along with a pillow and blanket. She blew a kiss to Mom so as not to disturb her, and hugged me.
“I’m so glad you’re here,” she said.
“Me, too.”
I spread out my picnic on Mom’s small round coffee table—a ham sandwich with mayonnaise and lettuce on Pepperidge Farm white bread, potato chips, sliced apple, and several cookies. It was just like the lunches Mom had packed for us in elementary school—with one difference. Instead of a carton of milk, Barbara had included a Manhattan in a mason jar, with a separate baggie of ice. After an appetizer of tears and Kleenex in the bathroom, I sat down to supper.
Mom slept quietly as I ate, read my book, and then turned out the light to doze a bit. At 11:00 p.m., an aide came in to check on her, and before I could intervene, she woke Mom to see if she needed a dry Pull-up. I couldn’t help being angry.
“You have no idea what it took to get her to sleep,” I said, and then apologized. “It’s not your fault. You didn’t know. But she’s not doing very well.”
“I’m so sorry,” she said. And, though we had never met, she hugged me.
Mom was now awake, so I offered a wet sponge. She took only the tip into her mouth. As I used the sponge to moisten her lips and tongue, I noticed that half of the Ativan was still undissolved. I spread the now-mushy tablet along her tongue so it would be absorbed, then sat close to the bed, holding her hand and stroking her arm until she fell asleep again.
I pulled Mom’s two armchairs close together with the seats facing, to make a very short bed. I got as comfortable as I could with the pillow and blanket, and after a while, I fell asleep.
That was Thursday.
I was already half out of my chair-bed at around 2:00 a.m. to check on her when I realized Mom was awake. I moistened her lips and mouth, but she didn’t suck on the pink sponge. Mom had stopped eating two days earlier. Now she was finished with drinking.
I got the Seasons staff to give her a dose of morphine and she slept again, but fitfully. She’d half-wake—continuing, though less frequently, to moan or call for help, and draw up her knees. It seemed as if she was working hard at something. I could almost imagine her swimming across a river or crossing a burning desert, from life to death. I wanted to pick her up and carry her to safety. I told her I loved her. I rocked her, and said that Barbara and I would be all right without her.
Mom had another dose of morphine at 4:00 a.m., but she never seemed to relax. Did she need more Ativan? At 5:30, I called the hospice and asked to speak with the on-call nurse. Leona called me back, and I took the phone into the bathroom so as not to disturb Mom.
“Can you come?” I pleaded. “Her breathing seems louder and raspier. But even if she doesn’t need you, I think I do.” I was too exhausted to cry.
“I just need to get dressed,” she said. “Give me thirty minutes,” Barbara arrived before 6:00 a.m. with coffee in hand. Leona came in a few minutes later.
“She’s refusing even the mouth swabs,” I told them.
Leona listened to Mom’s chest. She checked to make sure Mom was dry, and let us know that Mom probably would not make any more urine, especially as she had stopped drinking.
“Her breathing is a little more liquid, but still sounds pretty good,” she said. “I’ll give her the next dose of morphine, and Tammy will come by later.”
When Mom fell asleep, Barbara sent me home to get some rest.
Back at the house, I fixed myself an egg and toast, and felt better after I ate. I tried to work on some email, but nothing made sense. I took a short nap and a long shower. Phil called from work to say he would bring home Chinese take-out for dinner. I named him “Number-One Assistant” to Saint Barbara.
When I got back to Seasons, Mom was still sleeping. Barbara and I stayed with her throughout the morning, each of us slipping out now and then to take a break.
Around noon, Dena arrived, and Barbara went out to get lunch for the three of us. We chatted quietly, nibbling at our bagel sandwiches until Mom woke up. She had slept more than six hours, which was good, but now she seemed to be in pain, which was bad. We should have awakened her to give her morphine, but as she had been sleeping so quietly, we assumed she was comfortable. Still, I knew better from my years in hospice work. Round-the-clock medicines must be taken as prescribed to keep the blood level up. Daughter Melanie needed to channel Dr. Melanie more often.
Fifteen minutes or so after a dose of morphine and an Ativan on her tongue, Mom calmed down and slept quietly off and on the rest of the day. Letty was on duty at Seasons, and managed to give Mom the morphine regularly without even waking her.
Dena left at 3:30. I walked her to the car and gave her a big hug. The next day, Saturday, was her day off.
“Be sure to call me if anything happens,” she said.
“You know I will.”
Barbara and I sat by Mom’s bed, reading or watching her sleep.
“If you could just give her the pill, wouldn’t you do it?” Barbara asked me.
I thought about it. Wasn’t that what I had meant when I’d said I wanted to carry Mom to safety? Hadn’t I wanted to end it for her, quickly and painlessly? I closed my eyes.
No, I thought, I wouldn’t. Whatever was happening felt unexpectedly natural to me, even sacred—something to behold without judgment or interference.
“I suppose so,” I lied.
Barbara wasn’t wrong to want to spare Mom any further, pointless suffering. I’d always thought myself capable of “pulling the plug,” but at that moment, I was relieved that the decision was not in my hands.
Tammy showed up at 5:30 p.m. She checked Mom’s blood pressure and pulse, straightened the sheets, and gently changed Mom’s position, but only slightly.
“Make sure she gets the morphine every hour, even if she is sleeping. She will need it now. We don’t want her to suffer,” Tammy told us. “I’m on call tonight, so I’ll come back at 9:30 to see how she is doing.”
Barbara and I took turns going to the house to have some dinner. Barbara changed into comfy clothes, and gathered up her toothbrush and pillow to spend the night.
At 9:30, we reconvened with Tammy. Mom was sleeping. We were keeping her lips moist with the swabs and ChapStick. She had not spoken all day. Her breathing was shallow and raspy, but regular.
“I think she could use a little more Ativan, but her prescription has run out, and I’m not sure how soon we can get some more,” Tammy told us.
“Do you want an Ativan?” Barbara asked.
“Do you have one?” Tammy asked.
“I do,” said Barbara, pulling a pillbox out of her purse.
“Are you okay with this?” I asked Tammy.
“I am if you are,” she replied.
“We are,” Barbara and I said, looking at each other.
Tammy checked the dose and said it would be best to give it to Mom rectally, as she had so little saliva. Barbara and I stepped out to give Mom privacy. Then Tammy called us back into the room. We helped her settle Mom into a more comfortable position.
“I don’t think she needs any more morphine. I think she will pass easily now, on her own,” Tammy said. “I think it will be sometime tonight, or tomorrow.”
That was Friday.
After Tammy left, Barbara and I talked quietly.
“I don’t want to go to the house,” I said.
“But you’re exhausted,” Barbara said.
“I am, but I know I won’t sleep.”
“At least go stretch out on the couch in the parlor,” Barbara said.
I took the pillow Barbara had brought the night before, and Mom’s afghan. The parlor was at the front of the Homeplace building. The furniture was comfortable, and the room smelled disinfectant-clean. Light spilled in from the main corridor, but the couch was in a darkened corner. I closed my eyes, not expecting to sleep, then jerked awake as the door chime bonged, and bonged again. I watched the day shift leave, and the night shift arrive. One of them asked me if I was all right.
Then I slept again, until I felt a hand on my shoulder, gently waking me. Barbara sat on the coffee table, looking at me.
“It’s over,” she said. “It was quiet. She just stopped breathing.”
Silent, I bundled up the afghan and pillow as we both stood and walked toward the hallway. I touched Barbara’s arm and pulled her into a hug.
My watch said 1:45 A.M.
It was Saturday, April 10, 2010.