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. Late-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.
I heard the aide tell a coworker, “They don’t understand; this isn’t like the hospital.”
I hadn’t meant to complain or be rude, but how was I to know what to expect? Had I missed the orientation session? Was Mom supposed to ring the bell fifteen to twenty minutes before she had to pee?
These nursing aides are overworked and underpaid, taking care of people who rarely show gratitude, I reminded myself. And I wanted them to like me. No, I wanted them to like Mom, and be nice to her. In the coming months, I would learn that many of them worked two jobs—two full shifts, most days—both here and at another facility.
I aimed to be the model family member. I would learn the names and faces of all the nurses and nursing aides. I would greet them, whether I needed anything or not. I would thank them for every service. I would ask them to explain the rules. Over time, I hoped, they would thaw.
Both Mom and Becky decided to have dinner in the room. Mom said she was tired. Becky said she probably wouldn’t eat at all. She seemed miserable.
I went to the nursing station to make sure Mom’s medications had arrived from the pharmacy, and that they had the discharge orders from the hospital. Communication in these transitions from one care setting to another can be dismal—critical information gets misplaced, mistakes are made, patients go for too many hours without needed medications. I wanted to be sure Mom would get her antianxiety medication, Xanax, this evening, and her antidepressant, Lexapro, in the morning. I was prepared to go to her apartment and get them, if necessary, even though I knew I’d have to sneak them in—no outside medications are allowed in hospitals or nursing homes.
Susanna, the nurse at the desk, told me to check with Louise, the nurse who was in the hallway distributing medications. I interrupted her as politely as I could, calling her by name, and she assured me that Mom would get all of her meds on time—but she hadn’t actually checked the cart. I had Xanax with me, so the evening was covered. I decided to get some Lexapro from Mom’s apartment and bring it over in the morning.
Just as the dinner trays arrived, Mom needed to use the bathroom again. I had paid attention to the earlier bathroom ballet, and I was ready to try it on my own:
Aim the wheelchair toward the wall with the grab bar. Once Mom has hold of the grab bar, push gently on her back so she can stand; slide the chair back; then help her lower her pants and ease down onto the toilet seat. Leave the room to give her some privacy, but stay close by. When she’s finished, get her to grab the bar again, and help her to stand. Use the large, damp wipes from the box on the back of the toilet to clean her up. Pull up her pants, push the wheelchair close, and lock the wheels. Standing behind the chair, put your arms under her arms to brace her as she sits.
“Well, I never thought you’d be wiping my butt for me,” said Mom.
“It’s only fair,” I replied. “You did it for me. I owe you.”
I fought unease and sadness. If I can be comfortable, or at least act comfortable, doing this, I thought, then Mom can be comfortable, too.
We danced that dance over and over in the following months. It became routine, but it always felt unnatural.
By 6:15, dinner was over. Looking for a way to be helpful, I carried the trays into the hallway and placed them on the rolling rack for return to the kitchen. True to her word, Becky had eaten almost nothing. Mom had a better appetite, and happily, she had been able to feed herself with just a little help cutting up her slice of ham.
Mom wanted to get into bed. I felt like I needed to ask permission, so I rang the bell. Renee, one of the aides, came, and the two of us helped Mom change into the clean nightgown I’d brought to the hospital that morning. I was pleased to see that the scrapes on Mom’s knees from her big fall were getting better.
“Does she usually wear a diaper at night?” Renee asked me.
“No, I do not,” Mom answered.
I was close to tears. I was thinking about how long it might take for an aide to get to her if she had to get up in the middle of the night. Which would be worse? I thought. For me to suggest she wear a pull-up, or for her to wet the bed? I took a deep breath.
“Mom, just this once, since you can’t get to the bathroom on your own, would you want to wear a pull-up? I mean, in case no one can help you right away.”
“I don’t care,” she said, “I just want to go to bed.”
I took that to mean she was willing.
“Do you have one?” I asked Renee.
She brought the padded underwear, and I helped Mom put it on.
Renee showed me how to work the bed. Then I wheeled Mom into the bathroom to brush her teeth. Like a four-year-old, she held the brush awkwardly, and brushed with jerky, ineffectual strokes. I did not step in to help. Instead, I thought maybe I should buy her an electric toothbrush.
It was a little after 7:00 p.m. when I tucked Mom into bed. I hugged her and kissed her cheek.
“Sleep tight,” I said. “I’ll be back early tomorrow, and I’ll bring you some good coffee. I’ll bet the coffee here is terrible.” I smiled at her, but her eyes were closed.
“Thanks, honey. G’night.”
I turned off the light over her bed, and pulled the curtain so Becky’s light would not shine in her eyes. I said goodnight to Becky.
“I can bring you some coffee, too,” I offered. “How do you like it?”
“You don’t have to do that,” she said. “But I like real cream. They only have the fake stuff here.”
I walked down the gray hallway, now empty of wheelchairs, turned left at the nurses’ station, and continued past the intake coordinator’s office and out into the parking lot. I found my car and drove, without thinking, to the Harris Teeter for groceries. Klein called as I pulled into a parking space.
“I’m drained,” I said. “She’s at the nursing home. It’s dismal. She’s wearing a pull-up.”
“What?”
“You know, those adult diapers that are like padded underpants. I mean, as a precaution, but I don’t know, it’s so…I don’t know how we got here. I mean, I just didn’t think we’d ever be here. I don’t know.”
“You sound tired. Are you okay?”
“No, but yes. I mean, I have to be okay. I have to figure out how to entertain her for the next few days—there’s no TV. I cannot even imagine.”
“How can there not be TV?”
“There’s no TV in the rooms. I can get a TV, and they’ll hook it up—but nothing until Monday.”
“What about in a sitting room, or lounge, or something?”
“I didn’t think of that. My mind is fried. I’ll check tomorrow. Anyway, how are you?”
“I’m fine. Everything’s good here. The kitties miss you.”
“I miss them, too. And I miss you. But this is where I need to be.”
“I know.”
“I gotta go. I need to get some food and stretch out.”
“Okay. Love you.”
“Love you, too.”
As I walked into Harris Teeter, I saw them turn off the lights in the prepared foods section, closing it down for the night.
No! No! I thought, and then came the tears.