MY MELTDOWN IN THE GROCERY STORE CONFIRMED IT—five days into full-time caregiving, and I was a basket case. I cooked scrambled eggs for my dinner and sipped on red wine, thinking, how does Barbara do it day after day? How can I expect her to continue doing it? I was asleep by 9:00 p.m. and awake at 3:30 a.m., worrying about how to make the nursing home bearable. I lay in bed, dozing and planning, for an hour or so. Then I got up and got to work.
I typed up a one-page “introduction” to Mary Eleanor Pratt. Point number one was “She is called Eleanor.” In other points, I lauded her intelligence: bachelor’s degree in English, worked as a book editor and assistant to a doctor, elected president of both the hospital volunteers and the condominium association. I provided her backstory: grew up in Philadelphia, married to Dave for fifty-three years, raised her family of two girls in Northern Virginia near Washington, D.C., lived in Florida for thirty-five years, moved to New Bern two years ago, and lives at McCarthy Court. I listed some things she liked: all kinds of food, a nice glass of wine, cats and friendly dogs, a good joke, and, of course, television. I wanted them to see her as a human being, rather than just another old lady in rehab.
I selected a few books from Barbara’s bookshelf, figuring if there was no TV, then I would read to Mom and Becky. I chose Julia Child’s My Life in France, because Mom and I had enjoyed Julia’s cooking shows over the years, and a collection of James Thurber stories that Mom often quoted with wild laughter.
I made a peanut butter sandwich for my lunch and headed out. I went to McCarthy Court and picked up some clothes for Mom. I chose three of her most colorful blouses, two pairs of slacks, underwear, and her favorite L’eggs knee-high stockings. Then I stopped on the way to Beechwood for my usual cappuccino and muffin, coffee for Mom and Becky, and some grapes for us all to snack on.
I arrived at around 7:30 a.m. and found both women dressed and sitting in their wheelchairs, pushed up to individual tables holding breakfast trays. Mom was eating scrambled eggs, and Becky was buttering some toast.
“Good morning,” I sang.
They both looked up.
“Hi, honey,” said Mom.
She didn’t smile. I went over and hugged her, and she leaned into me for a moment. Then she went back to her breakfast.
“I brought coffee,” I said. “With cream, for Becky. I put it in a separate cup so you can add as much as you like.”
“Thank you so much.” Becky reached for the cup I offered. “I’m still not hungry, but that coffee smells really good.”
I chattered to both of them, telling them I had brought books and grapes, reviewing the weather—warm even this early in the day—and wondering aloud if we might go outside a bit today. I posted Mom’s bullet-point biography on the bathroom door. Later in the day, I awarded myself an attagirl when one of the aides looked at the list and asked whether Mom wrote books.
As I hung Mom’s clothes in the closet, I thought how she seemed to be fraying, just like the seams on her ancient lime green polyester stretch slacks. She was usually so social, but she wasn’t even trying to engage Becky in conversation. She seemed distant and disconnected. I reminded myself that she needed time to recover from the physical trauma of the pacemaker surgery—and it had only been nine days since her big fall.
The rest of the day passed slowly. I played social director, trying to entertain my listless guests. Mom and I went exploring. I rolled her down the hall and we found the “living room” with its comfortable chairs, a large wood-and-glass aviary housing several colorful parakeets, and (hooray) a television. I told Mom we might come back later to watch TV. We found the dining room where rehab patients gathered for lunch and dinner. Three large windows filled the room with natural light. Four rectangular tables covered with faded flowered cloths offered space for six to eight people each. A staff member whose nametag read Deanna was setting up the tables for lunch. I greeted her by name, and introduced myself and Mom.
“When you come for meals, you can sit anywhere you want to,” she said. “We’ll bring you a tray. And we have sweet tea in a pitcher over there all day long, so you can get some anytime you want.” She gestured to a small table in the corner.
“I only drink coffee,” Mom stated.
“Well, we can bring you coffee with your meal,” said Deanna. “I can even get you some now. Do you want some?”
“No, thanks,” Mom said.
I thanked Deanna for her help.
“We just got here yesterday,” I said, “so we’re still learning how it all works.”
“Okay, I’ll see you at lunch,” said Deanna.
I smiled at her and said thanks, again, trying to make up for Mom’s lack of manners. Mom was so unlike herself, it scared me.
Back in the room, I chatted a bit with Becky. She lived at the Marriot Courtyards Senior Apartments in New Bern, formerly known as The Villages. That was the other option we had considered for Mom. Her daughter lived about twenty-five miles away and had two children, so she wouldn’t be able to visit every day.
“She’ll come by tomorrow after church,” said Becky.
I read to Mom and Becky from the Julia Child book for about an hour or so. I didn’t dare try the Thurber. If I read one of Mom’s favorite passages and she didn’t laugh, it would break my heart.
Around 11:30, the three of us trooped to the dining room for lunch. Becky nibbled on some rice, but Mom surprised me by eating nearly an entire chicken breast after I cut the meat off the bone. All the while, I talked with the man sitting next to Mom, though I remember nothing about him or our conversation. Mom seemed to be concentrating hard on her plate. She barely spoke.
After lunch, both Becky and Mom were ready for naps. I needed a break, and told Mom I would go home for lunch. I asked Becky if there was anything special she would like to eat. I suggested a milk-shake, drawing on hospice lore that even very sick patients loved the cold creamy sweetness of a shake.
“That sounds good. Could I have chocolate?” she asked.
Instead of going home, I drove to a park and ate my sandwich outside. It was hot, but I wanted the sun and open air after the gloom of Beechwood. I forced myself to sit there for more than half an hour, and the whole time, I worried about what was happening at the home. There wasn’t much I could do to improve the situation, but I felt it was my job to share her misery. On the way back, I stopped at McDonald’s for Becky’s milkshake, and stole a few sips for myself.
Mom and I watched some TV in the living room—the end of a Law & Order rerun, then NCIS. It turned out we had to ask someone at the nursing station anytime we wanted to change the channel. Mom dozed while I tried to lose myself in the mindless entertainment.
We went back to the room, and I read some more of the Julia Child book out loud. Mom and Becky had been granted permission for dinner in the room one more day. I kept listening for the clatter of serving trays, a sign that the day was finally winding down.
Once the food arrived, I helped the ladies organize their trays and open their cartons of protein drink. Then I went to the kitchen to get some hot coffee for Mom. As I wandered down an unfamiliar corridor, I saw a woman resident with a young man—her son or grandson, I supposed—watching a movie on a small DVD player. Brilliant, I thought.
“Hey, Mom,” I said as I walked back into the room, “Barbara and Phil have a wonderful collection of movies and old TV shows on DVD. What if I bring some of them in to watch tomorrow?” I figured I could get a reasonably-priced player at Walmart.
“I’d rather have a television,” she said.
“I promise we’ll get you a TV as soon as possible, but it won’t be until Monday, at least.”
“Okay. Will you still be here Monday?”
“Yes. I’ll be here for another week or so.” I was committed to staying as long as necessary, even after Barbara returned from vacation. I wondered what “necessary” might mean, or how long it might go on.
I took away the dinner trays, and helped Mom go to the bathroom, brush her teeth, and change into her nightgown. I rang the bell for an aide to get Mom tucked in. Renee came in about ten minutes later. She asked Mom about wearing a pull-up, and Mom agreed. It took me a minute to realize that the entire exchange had not involved me at all. That was good, right? It was good that Renee had addressed Mom directly, and good that Mom seemed comfortable with Renee. I could relax a little bit, couldn’t I? Or could I?
I slept well that night, more likely from pure exhaustion than from any measure of relief. The knot in my stomach the next morning let me know I was still on high alert. I convinced myself to go to the gym—care for the caregiver. The voice in my head said Mom will be okay.
I left the gym at 7:00 a.m. and headed for Walmart (open twenty-four hours a day) to buy the DVD player. Then I went back to the house, showered, and drove over to Beechwood at around 9:30 a.m., stopping on the way to pick up some coffee for the ladies. I was proud of myself for honoring Mom’s independence by going so late, and ashamed of myself for having left her alone for so long.
Mom was in the bathroom with Nelly, one of the aides, when I arrived. See, I told myself, she does just fine without you. I handed Becky some coffee and asked her how things were going.
“Okay. I ate some eggs this morning, and I’m feeling a little bit better.” Hearing sad-sack Becky say something positive seemed like a good omen for the day.
I set up the DVD player, trying to put it in a place where both Mom and Becky could watch the tiny five-by-seven-inch screen. I showed Mom the DVD choices—Breakfast at Tiffany’s, Singin’ in the Rain, Vertigo (the Hitchcock classic), and the collection of old Jack Benny shows. She asked me what I wanted to see. I chose Vertigo.
“Jimmy Stewart and that elegant blonde,” said Mom. “It’s a good movie.”
I smiled, happy she had recalled Jimmy Stewart’s name and Kim Novak’s cool beauty. About halfway through the movie, Becky’s daughter, Susan, arrived. I hit the pause button.
After greetings and introductions, Susan thanked me for all I had done for Becky.
“It’s no trouble,” I said. “I’m here in New Bern just so I can look after Mom, and I’m staying at my sister’s house, only fifteen minutes away.”
After a bit more small talk, I suggested to Mom that we go down to the living room to watch TV. We caught up with Becky in the dining room at lunchtime. Susan had left, but would visit again in a few days, Becky told us.
My cell phone rang in the middle of lunch, and I was happy to see it was Barbara calling. We hadn’t talked since Wednesday evening after Mom’s pacemaker placement, though I had sent short email updates every day.
“How’s it going?” Barbara asked. “We’re getting settled, I think. Mom still seems kind of removed, like from everything. Maybe that’s a good thing.” I had walked outside to take the call.
“We’re thinking about coming back early, and not just because of Mom.”
“Well, you don’t have to come back for her. I’d rather you get your full away time. There’ll be plenty to handle when you get back.” I worried my emails had made her feel like she had to return, even though I had tried to keep them light.
“I know. But it would be nice to have some overlap time with you, so I can get up to speed quickly.”
“Well, I’d love to get some time with you, too, but please stay away as long as you want to. I’m hoping Mom won’t be here more than a week or so. I found some info in your files for the home rehab company. Do you have anything on home health agencies?”
“We’ve used Tar Heel Home Health. Check the accordion file next to the desk. Or you can call the nurse at Seniors Choosing, for a referral.”
“Okay. I just want to start looking into options for when she goes home.”
We talked a little about her trip. She and Phil had visited a friend in Portland, Maine, and then driven to Moncton, New Brunswick. She said it had rained for two days straight, but now it was beginning to clear.
“Tomorrow, we’ll drive to St. John’s and take the ferry to Nova Scotia. We’ll spend the night, and then maybe head home. I’ll keep you posted,” she said.
“Do you want to say hi to Mom?”
“Sure.”
I went inside and wheeled Mom into the corner near a window, then handed her the phone. She talked to Barbara for a few minutes. I heard her say, “Love you, too.” I took back the phone, and told Barbara we’d talk again soon.
Back in Mom’s room, I finished watching Vertigo while Mom and Becky dozed in their chairs. Then I put in the Jack Benny DVD. After five minutes or so, Mom asked me if we could change the channels. I explained that the player was not a television.
“But if you don’t want to watch, we could read some more of the Julia Child book, or go for a walk.”
“No, I’ll watch this,” said Mom, her voice still flat.
I excused myself and went into the bathroom. I washed my hands and splashed cold water on my face. Then I looked in the mirror and let out a huge sigh. I didn’t want to be at Beechwood. I didn’t want Mom to be there. I didn’t want her to need to be there. I wanted to take her to a nice hotel and order room service, and let her change the channels to watch her favorite shows. I wanted to hear her laugh, or call out an answer—I mean a question—for a Jeopardy clue.
When I came out of the bathroom, a nurse was in the room talking to Becky. She looked over at me and I checked her name tag—Dorothy. I introduced myself, and she told me Becky would be moving to the rehab wing the next morning.
“That’s great,” I said. “Will someone else be moving in, or will Mom go to a new room, too?”
“I’m not sure,” said Dorothy. “You could check with the administrator. She’s not usually here on Sunday, but I just saw her. You might find her in her office.”
I’d been eager to meet the administrator. It was part of my “make sure you know the people in power and they know you” strategy. I’d seen the sign designating her office in the entry hallway. She was on her way out when I walked up, but she graciously unlocked the door, flicked on the light, and invited me in.
After shuffling through a few papers on her desk, she said she had the request for a single room, and indicated that Mom would probably move to one on Monday or Tuesday. I asked a few more questions, and she confirmed that Mom would see the therapist the next day.
“She’ll have several assessments—physical, memory, and occupational, meaning whether she can handle her activities of daily living by herself,” she said.
I knew about the five activities of daily living (ADLs), because every hospice patient receives an ADL assessment to help determine which services they need. The names can change depending upon the institution, but the five are: bathing, dressing, transferring or ambulating (for example, walking and moving from bed to chair), toileting, and eating.
As I left the administrator’s office, I felt hopeful. Tomorrow would be better. Mom would get her assessments, which was the first step toward getting her strong enough to go home. She might be moving to a better room. Dena would visit. And at last, I could put in my request for television service.