Not like anything on TV

It’s not like what we see on TV.

There’s no abundance of family crying together as they watch their loved one die. Those words that have gone unspoken for years usually remain unspoken. There’s no glamour in dying, no glamour in caring for the dying.

And that’s all I could think about as I watched my mom lay there, helpless, on her bed in the memory care unit. How she’d be alone when she finally passed, how she may not even be aware she’s dying.

“Help!” she screamed, shaken out of a brief moment of rest that wasn’t really rest. Her recent pattern, or at least the one for today, consisted of a minute or so of calling for help with her whole body shaking. Then her head would slump to her shoulder, followed by her whole body going limp from exhaustion.

I squeezed her hand tighter. “I’m here, Mom. You’re safe.”

She looked at me with her once bright hazel eyes. “Oh, thank God. Where’s Mom?” Her voice was strained and hoarse from the screaming she’d done today.

“She was just here.” I lied.

“Help!”

“You’re safe,” I repeated. I guess the both of us were on a loop of repeating words. “You’re okay, I’m okay. Dad is okay.”

“Where’s Mom?”

Thankfully, the hospice nurse walked into my mom’s room, saving me from another thirty minutes of this.

“Good morning,” Danielle said. “How’s she doing today?” She had her large, black medical bag slung over her shoulder and wore her usual blue scrubs. “I could hear her from the nurse’s station in the hall,” she said, as she put her bag down on the small nightstand next to the bed.

“She’s been like this since I got here an hour ago. I was able to feed her a little bit in between her calling out. The aides came in and told me she hasn’t eaten much today.”

Danielle fished through her bag looking for the pulse oximeter and blood pressure cuff. She deftly started checking my mom’s vitals as I spoke. How many patients has Danielle seen in the course of her hospice career? How many times has she multi-tasked like this?

“Peggy!” Danielle said, trying to get my mom’s attention.”I’m checking your blood pressure. Okay, honey?” 

My mom nodded in response. I could tell she liked Danielle as the yells tended to subside when she was there. I didn’t have whatever Danielle had, that ability to help keep my mom calm.

Danielle glanced at the loud oxygen concentrator that sat on the ground by the bed. “Hmm.”

The reading on the pulse oximeter was eighty-seven. “Her oxygen is still at four liters, right?” I asked.

“I’m upping it to six.” Danielle bent over and twisted the small knob on the concentrator. “We’ll see if that helps.” 

I looked at my mom, watched her slipping away. She was alert—rather, as alert as she could be—at the moment, but it still felt odd to be making choices for her. She’d lost any agency she had over her body and medical decisions. It was rude to be talking about her, as if she weren’t there. But, I guess she wasn’t really there anymore. She was far from the woman I knew.

Danielle must’ve seen the lines of concern on my face, as the next thing she said was, “She’ll be okay. I believe God has the final say and he knows the right thing to do. He knows when it’s our time.”

I nodded. I hadn’t believed in God in a long time, or at least the way people refer to God. And I certainly didn’t believe that any god I could believe in would do this to my mom. She didn’t deserve this. But, I still nodded. It was something even Danielle had to believe in, I suppose, so that she could get through her own day as she traveled from dying patient to dying patient.

***

Less than twenty-four hours after my mom’s oxygen was increased, she transitioned to a diet of pureed food and thickened liquid. 

“I thought about a feeding tube,” my dad said to me, after the aides had come and gone from my mom’s room.

“No. She wouldn’t want that.”

“I know.” He shrugged, burdened with a heartache I couldn’t understand. The love of his life was leaving him. His voice cracked. “But I still thought about it.”

My dad, the doctor, knew all the consequences that could follow with a feeding tube and unnecessarily extending her life. He knew the prognosis of Alzheimer’s and the path we were inevitably on, but he still thought about the ways in which he could keep her alive. For perhaps that extra glimpse of the woman he knew.

“Danielle asked me what funeral home we were using,” I said as carefully as I could.

“She asked me too.” My dad bent over to stroke my mom’s cheek and give her a kiss on the forehead. A ritual he had taken up “Come on, Peggy, take a drink of water.”

My dad was spooning thickened water into my mom’s mouth. It was a messy process. But dying is a messy process in and of itself, I guess. He caught a dribble of water that didn’t quite make it in her mouth, but after a spoon or two of that, she was done anyway. She stared out the window—a sign that she’d mentally wandered further away from us. I glanced at the urine collection bag hanging at the foot of her bed. There wasn’t much in there.

***

“I’m gonna die,” my mom said to me very clearly one afternoon.

I know, I thought. I squeezed her hand harder. “It’ll be okay,” I managed to whisper.

“I’m scared.”

Me too, I thought. “We’re gonna be okay. And I promise I’ll take care of Dad.”

***

“Your dad doesn’t like to talk to me about the funeral home,” Danielle said as she cleaned my mom up.

I pushed on my mom from the opposite side of the bed, trying to help her lay on her side so Danielle could do a thorough job. “No, he doesn’t. But I’ve called and made arrangements for the funeral home and cemetery.”

“I can hear him cry anytime I catch him on the phone.” Danielle positioned a clean brief on the bed, then we rolled my mom on top of it.

Danielle probably did this several times a day, almost every day, as she traveled from patient to patient. She was clearly practiced, but I was still amazed at how easy she made it all look—positioning my mom this way and that, making it look like a simple task to clean and change her. She was a larger woman, sure, but my mom wasn’t a slight woman either. 

After Danielle cleaned my mom up, she moved on to checking her vitals. While she did that, I tried to engage my mom by talking about my daughter, but she was hardly there. Her breathing was raspy and labored. Her abdomen heaved with every breath.

“I think it’s time we start some morphine.” Danielle closed the binder where she took all her notes and looked at me. She knew it was okay to be blunt with me. I’d asked her plenty of blunt questions myself over the last several weeks. “It’ll help her be more comfortable. And that will help her pass more easily. I’ll start her on a low dose, just to see if we can get that breathing under control.”

I nodded. “That sounds good,” I said, trying to make my voice sound normal. I likely failed.

After a few minutes of her calling my mom’s doctor and touching base with my dad, that first dose of morphine was administered.

***

I spent the next several hours with my mom that day and the next. She was non-responsive by the next day. Alive, but not there. A blank stare was all the response she gave me. She was too out of it to drink, so I rubbed her lips with a sponge. When my dad came in the evening, I spent a few minutes with both of them. He never took his eyes off my mom, and I left shortly after to give my dad some private moments with her.

It was the 26th of September. I’d told Danielle I thought my mom might pass on the 28th. She didn’t disagree with me.

***

September 27. The phone rang, pulling me from sleep. It was 4:56 AM. Unknown number. I knew who it was.

“Hello?”

“This is Lynn, from hospice. One of the aides from the memory care found your mom unresponsive at 3:15AM. I’m sorry, but your mom passed this morning.” 

There was a lot of tenderness and concern in her voice, despite the direct words she used. I asked some questions, told her I’d be there as soon as I could.

And all that entered my mind was how my mom died alone, in the middle of the night.