by Leigh Kramer
“Yes, but that doesn't mean anything,” I insisted. Who was I trying to convince?
“Fine. Do you want to tell me the reason you stopped showing your work?” There it was, my chance to set things right.
“I can't,” I choked on the words.
“You can tell me anything, dear. It won’t change my love for you.” She squeezed my hand in reassurance.
“Not this. It's too big and too long ago.” I hesitated. I didn't want to tell her what happened but I could talk around it. “I did tell Reagan why. I've never told anyone before.”
“Reagan's a good person to talk to. Did he change his opinion of you?”
“No, he didn't. He thinks I should start showing my work, too. The reason I changed paths made sense back then but it’s too scary now, too vulnerable. Not letting anyone know I still paint is a habit at this point.”
Gram read the anguish in my eyes. She set the canvas on the other side of the bed and drew me down to her. We hadn't cuddled since I was a child. She rubbed my back, somehow finding the physical strength to comfort me.
“Your love of art was never about rebelling against the family. You are too creative and adventurous for that. It’s part of who you are.” Her words soothed and I tucked them away for further consideration. “If you don't like the trajectory of your life, it's not too late to change it. It's one step at a time, Livvie. One choice at a time. I can’t tell you to stay at the gallery or to go. You’re the only one who can figure out what will make the best story. I only want for you to live the story you were meant to live.”
“I don't know that story anymore,” I said, frustrated with myself. I thought adulthood would be easier than it turned out to be, or at least more straightforward.
“It'll come to you. You are my granddaughter, after all.”
* * *
Every day Gram slipped further from us. The bedside commode arrived, along with a walker. Uncle Jeff carried her downstairs Thursday afternoon. She spent time in each room, caressing certain photographs and reliving memories. We propped her up in a kitchen chair where she oversaw the creation of a brownie and toffee trifle. I shot two rolls of film with my Canon Rebel. I didn't want to miss one moment of her instructions. After an hour, she nodded her goodbye to the main level of the house.
She slept more and more. We were lucky to steal an hour awake here and there. I set timers to remind us to wake her for the bathroom. More accidents occurred, thankfully absorbed by the pads on her bed. Gram accepted she was losing ground but made me promise not to put an adult diaper on her until she was no longer aware of her condition. One last dignity.
These conversations pained us both. My grandmother was slipping into some person neither of us recognized. She who waxed poetic about sunrises and the art of hospitality now reduced to discussions of bowel movements and narcotics.
Charlene the CNA increased her visits to three times a week. We installed a shower chair, as Gram was too weak to stand for that long. I would have gladly helped her with bathing but didn’t mind keeping this aspect separate. We'd breached enough boundaries with her needs for assistance with toileting and getting dressed.
It was harder to stay on top of her pain medication. When family arrived to give me a break, I gave them a laundry list of instructions. Transfer her to the commode like this. Give her this pain medication first, then this one for breakthrough pain. If she looks restless, the lorazepam might help her sleep. There was no end to our considerations.
The restlessness was the hardest part. She slept hard during the day but nights were a different animal. Sometimes I managed a few hours of sleep in between attending to her needs, but it was often less. She would ring the bell fifteen minutes after using the commode, forgetting I'd just taken her. She suddenly had compulsions to talk, sharing family history and advice for a few hours before crashing at five or six o’clock and sleeping for the rest of the morning.
Since she spent the majority of time in bed, we had to be vigilant for bedsores. A hospital bed was ordered so as to preserve my back from bending over her low bed. I'd summoned my cousins to pull apart the king-sized bed Gram and Pop had shared for all of their marriage. The pieces were stowed in the garage to make way for the bed only patients used. That Gram consented to even this sent waves skipping across my anxiety.
The knowledge I obtained as a caregiver staggered me. I couldn't believe a segment of the population lived like this each day. Gram's prognosis tick-tocked in the background, ever before us. Days to weeks, we knew. But which day and which week?
Chapter Twenty-Two
Justin hung up the phone. “The doctor ordered roxanol, which is more effective at this stage. Between the roxanol and lorazepam, she should be much more comfortable. We can hopefully get you sleeping better, too, as a result.”
I looked at him through weary eyes. I'd lost track of when I'd last had a good night's sleep. Sixteen days had passed since Gram's birthday. I didn't want to say goodbye to her but I didn't know how much longer we could go on like this.
“I haven't heard of roxanol before,” I told him. Another medication to learn.
“It's the generic form of morphine,” he said. My eyes opened wide in spite of themselves. “Patients get more direct pain relief from morphine as it goes straight to the central nervous system. Morphine gets a bad rap but it provides the best pain control. We wouldn't recommend something ineffective or harmful.”
“I trust your judgment. Honestly, if Gram wanted to be addicted to something right now, I'd say good for her.”
Justin grinned. “Even so, she's not at risk for becoming addicted because she'll be taking the medication to address a physical need, instead of a psychological one.”
I scribbled that bit of information down in my notebook in case someone raised the issue. Or in case I plain couldn't remember the latest medication change. I continued writing as he told me how to administer the medication.
“It's going to come in liquid form, so you'll measure it out in a dropper. It absorbs really quickly by mouth. Try to place the dropper under her tongue or in her cheek. It doesn't taste great so she'll probably want to chase it with water.”
“Got it,” I said. “I know you hate answering this question but everyone told me to ask. How much longer do you think it will be?”
“You're probably better suited to answer this than me. You're with her day in and day out. I wish you'd take longer breaks than an hour here and there.” I waved his concern aside. I was grateful to have had Saturday nights free so I could sleep in my own bed and be with Reagan before returning to the house. Anything more would be an imposition. No one else felt as comfortable managing Gram's care. This was telling, given what a reluctant caregiver I'd been at first.
Seeing I wouldn't offer my own prognosis, Justin tried again. “All right. Let's look at the facts.” He pulled out the pamphlet he'd given me earlier and went down the checklist. “She hasn't eaten anything since Wednesday but she's still taking small drinks of water. Yesterday you started using diapers, which is possibly the most significant change. Add to that, her blood pressure is lower. She's awake an hour at most. Her breathing is a bit more labored. Her pain is worse. All signs point to her body shutting down but it's still a guessing game.”
“What's your best guess?” I pressed him.
“I'd say we're looking at days. Probably not tomorrow but I would be very surprised if she was with us a week from now.”
Pain lanced through me. I nodded dully. I'd guessed as much. “Thank you for being honest,” I told him.
“Given all this, the other thing I'm going to order for you is called a scopolamine patch. Sometimes when a person gets closer to dying, their breathing changes. Ella May already sounds raspy at times and I imagine that will increase. People call it the 'death rattle.' It doesn't sound pretty but if this happens for your grandmother, she will be in an unconscious state. She won't be aware of any of this and it won't cause her discomfort. The scopolamine is more comforting for
the family, really. If you start hearing something, just stick the patch behind one of her ears.”
He reminded me about repositioning her every few hours and other steps we could take to ensure her comfort. I added these instructions to the list and hoped I'd keep it straight if and when the time came.
“What else can I do? How can I help you?” he asked. The hospice team had made good on their promise to be there for us through thick and thin.
“I think that's it,” I said. The weekend loomed before us.
Justin gathered his clipboard and stethoscope. “The new medications will be delivered sometime today, hopefully in a couple of hours. Call me if anything changes this weekend. I mean it. There's no dumb question, remember? If you're not sure that she's comfortable, whoever is on-call can come out. Do not hesitate to ask. I'll check in with you guys Monday morning.”
I trudged back upstairs to Gram's room. Still sleeping. I looked at the clock and saw it was mid-morning. We didn't expect any company until this afternoon. The air mattress on the other side of the room called my name. Everyone told me to sleep when I could. Though naps had never been in my vocabulary, lethargy swept over me and I sank deep into sleep until knocking at the front door startled me awake.
I hurried downstairs, hoping it was the medication delivery. Instead, I found Reagan.
“Oh my gosh,” I groaned. “I must look terrible but I’m so glad you’re here.”
“You’re beautiful. I didn’t want to wait until tomorrow to see you again,” Reagan said, pulling me in for a hug and a kiss. “Did I wake you up?”
“Not a big deal,” I lied. “I should clean up the house or bake or something. I need to make things presentable before Marcus and Pam get here tomorrow afternoon.”
“I will clean,” he told me. “You go rest or read or do something relaxing.” I did a double-take at the offer.
“Reagan, I'm sure you have better things to do. Like, I don't know, finishing your paintings for the exhibit. It's next week,” I said, with no small amount of anxiety in my voice. He had been so patient through all of these changes. I barely remembered to ask him about his day anymore but he didn't press the issue. For whatever reason, I had won the boyfriend jackpot.
“Everything's set for the exhibit. That's the last thing you should be thinking about right now. I came out here because I miss you and because I wanted to make sure you're taking care of yourself. You really should let your family help out more.”
“Let them? I would gladly let them. The worse she gets, the more scared they are and the more they don't want to stay with her by themselves. I'm lucky Marcus and Pam haven't backed out for tomorrow.” Bitterness tinged my voice. I changed topics. “She's not doing well, Reagan. Justin thinks we have just a few days left.” My voice caught. “I don't know what to do. I can't say goodbye to her. I can't. So many times I think I should say it but the words won't come. I feel guilty when I leave but I need to get out of this house. I don't know if I can be here when she dies.”
“Hey,” he said, wrapping his arms around me. “It's going to be okay. If you need to say something, you'll know it. Don't put pressure on yourself to be here for this reason or that. You can't control this. You wouldn't want to even if you could.”
Yet I grasped for control of something. I didn't know what life would look like once Gram left us. I was anchored to the present because the future was too frightening to bear.
“You still have time,” he said. “A lot can happen in a few days.”
* * *
Voices greeted me as I walked through Gram's front door. Loud, angry voices. I quickly snapped out of my post-brunch reverie. Any sense of refreshment vanished. I ran toward the living room to see what had happened.
I encountered a mini-family meeting of sorts. Marcus, Dan, Pam, and Jeff shouted at each other.
“What's wrong? Is Gram all right?” I asked, skidding to a stop before them.
They blinked, surprised to see me. An awkward silence settled. No one wanted to be the first to clue me in to the debacle.
“Is Gram all right?” I asked again, adding urgency to my words. Surely, they wouldn't argue downstairs if something had happened.
“She's fine,” Pam reassured, shooting her husband an irritated look.
“She is not fine,” Marcus bellowed. “She didn't wake up when I got here.”
True to form, Marcus had not stayed overnight. He'd left caregiving duties to Aunt Pam, then swept in this morning ready to set things right.
“Gram hasn't been awake in the morning the last few days,” I reminded him. “Afternoons are better. Anyway, that’s not the point. We know she's not going to get better.”
“Marcus wants to send her to the hospital,” Jeff interjected, his arms folded across his chest.
Caught off guard, I studied my uncles and aunt. This wasn’t happening on my watch.
“For what?” I demanded. “She's in her own home. We have medication to keep her comfortable. Hospice is available twenty-four-seven. This is what she wanted.”
“See,” Dan jumped in. “This isn't easy for any of us, Marcus. But she's comfortable and we need to respect her wishes.”
“She doesn't know what she wants anymore,” Marcus shot back. He walked toward the desk holding the phone. I ran to get in front of him and blocked the desk.
“Don't even think about calling nine-one-one. You don't call the shots here, I do. Gram told us she wanted to die in her own home and that's how it's going to happen.”
I glared at him, willing him to concede. Had all our years of conflict boiled down to this? My body tensed. I would fight him if I needed to. If he couldn’t respect Gram’s last wishes, I sure as hell wouldn’t respect him. Defying his wishes had become second nature but this was a whole new level. Never did I need him to back down more than now.
Pam came up behind him and placed her hands on his arms. “They're right, honey. It's time for us to say goodbye to her. There's nothing the hospital can do. You know that,” she soothed.
Marcus' face crumpled. He turned around and buried himself in his wife's arms as he sobbed. I'd never seen him cry before, not even at Dad's or Elaine's funerals. I darted looks at Dan and Jeff but they mirrored the same shocked expression on my face.
* * *
Gram didn't wake up that afternoon. I went in and out of her room, administering medication, repositioning her, checking to see if she would stir. I shook her at one point, just to see, but she didn't respond to my touch nor my voice. Most of the family stopped by to visit. It was the new tradition to gather Sunday afternoon, though Gram had joined us in previous weeks.
Each time I rejoined everyone in the great room, eyes turned toward me expectantly. Each time, I shook my head no. No change. She was still asleep. But it was more than that. Her body grew heavier to reposition. Normally she'd wake during that process but now she didn’t stir. Her normally warm skin was clammy. Her breathing seemed different, too. I hesitated. Should I call Justin? I didn't want to interrupt his weekend. Instead, I called the triage nurse to review Gram's medications and reassure myself about these changes.
“It does sound like she's starting to transition,” Sam said over the phone. He waited a beat before continuing. “Does she look comfortable?”
I looked at her, peaceful as ever. “She does. I've tried to stay on top of the comfort meds.”
“Good, good. That's exactly what you should do. If you haven't added the scopolamine patch yet, I'd put it on now as a preventive measure. It'll give it time to be effective.”
“I can do that,” I said. I took a deep breath. As much as we'd known this day would be coming, I hadn't thought it would come this weekend. Or ever, really.
“Call back if you have any questions or if anything changes,” Sam encouraged.
If only I could call to say this had all been a terrible mistake, that Gram had been acting all along. She's quite convincing that way, I'd say. Life would go back to normal and I could unlearn all of this end
-of-life knowledge I'd acquired. I would go back to the gallery and my family would go back to misunderstanding me. We could all play our parts. Gram’s diagnosis had changed everything.
Mom came in to Gram's room as I peeled back the adhesive on the scopolamine patch. Does this look right? I stared at it, then placed it behind Gram's left ear.
“How's she doing, honey?” Mom asked, her voice so soft I barely heard her. I froze. I could not buy any more time.
“I think she's getting ready to leave us, Mom,” I said, testing them for truth. I ached with the weight of those words.
“What—right now?” Mom exclaimed, coming closer to the bed.
“She's breathing different, isn't she?” It could be all in my head. We could still have another week with her. Looking at her, though, I knew better. This wasn't Gram; it was a vessel.
We watched Gram breathe. Each rise and fall of her chest took more effort. The rasp sounded worse. The so-called death rattle? Her heart beat rapidly, the pulse jumping in the vein on her neck. Gram's jaw hung slack, in defiance of her preference to be the picture of decorum.
Mom wiped tears from her eyes. She knew it, too. “I'm going to let everyone know. They should have a chance to say their goodbyes.”
I nodded my agreement. Gram's presence tethered me to this spot next to her. I didn't want to leave her. People began to file in to the room, either shell-shocked or with tears streaming. A half-circle formed around the bed, several rows deep. There were too many of us to all gain direct access to her.
No one knew what to say or do. How long could we stand here and wait for her final breath? There was no way to know when it would come. In any case, Gram would have told us to find something better to do than stare at her.
Somewhere behind me, a soprano voice rose. “Praise God from Whom all blessings flow.” The Doxology. To sing a church hymn even in this moment. I didn't know my family had it in them.
