Chapter 20
I MADE PLANS TO GO TO NEW BERN for the first weekend in October to help set up Mom’s room at Seasons, then sort through all the remaining things in her McCarthy Court apartment. I sandwiched my visit between the National Hospice and Palliative Care Clinical Team Conference in Denver and the Alabama Hospice Organization meeting in Montgomery. Ironically, I was presenting lectures on managing hospice quality of care, and simultaneously struggling to figure out what was best for my own mother.
I arrived Thursday evening, and Barbara and I drove over to visit Mom at Beechwood at around 7:00 p.m. She was sitting up in bed, snacking on some graham crackers.
“You look like a queen,” I said, giving her a hug.
“I feel like a queen, especially now that you’re here.” Mom smiled. I had not seen that smile in a long time, and it stopped my heart.
I sat at the end of the bed, pulling up my knees and leaning on my elbow near Mom’s feet. Barbara muted the television and we chatted about my trip, Mom’s rehab, and the weather. Then Mom asked if I’d be back tomorrow.
“Of course, I’ll come for a visit, but most of the day, Barbara and I will be moving your things into your new place at Seasons.” I said it as if it were completely normal, and not the upheaval it felt like.
Mom’s smile faded.
“So, it’s all decided?” she asked.
She had been told about the move several times. Barbara had told her. I had talked to her about it by telephone. We knew it hadn’t sunk in, and we were pretty sure it wouldn’t until she was there.
“Yes,” I said.
“Whether I want it or not?”
“Mom, everyone agrees—Dr. S., especially. This is what you need right now.” I knew how she valued the doctor’s advice.
“It’s gonna be okay,” Barbara reassured her.
I hugged Mom’s legs.
“Will you stay for Jeopardy?” Mom asked.
“But of course,” I said, hugging her again.
Barbara and I skipped a walk the next morning. The move would provide our exercise for the day. Kathy had given Barbara the code for the back door at Seasons, and shown her where they kept the big rolling cart we could use to ferry things across the parking lot from McCarthy.
Phil helped us move the furniture, including the glass étagère and its contents. Then Barbara and I chose the smaller items, with an eye toward making Mom’s room at Seasons feel as much like home as possible. We took the artwork from the walls that faced her favorite chair. We took the pastel portrait of the two of us sitting on the piano bench in our party dresses at ages four (me) and eight (Barbara). We took the crewel-work cat picture Mom had stitched, a favorite afghan, everything from the top of her bureau, and those damned cat sheets, even though they were too big for her single bed. We took the cracked grape-cluster pitcher she liked to have in the bathroom.
By Saturday afternoon, the room at Seasons was full of personality. The only institutional item was the small white board hung next to the closet. Barbara said it was used to remind residents of the day and date, and to leave messages for the staff if residents had something special scheduled, like a doctor’s appointment or dinner with family.
I looked around the room.
“Amazing,” I said. “It almost looks as if Mom already lives here.”
“Technically, she does,” Barbara replied.
“God, I hope she likes it.” I smoothed a few wrinkles out of the bedspread.
“Either way, I think we did a good job. It really looks nice.”
We transferred the phone and the cable television account. All that remained was to bring Mom and the new television over from Beechwood. She was due to be sprung sometime in the following week, so Barbara would be the one to escort the queen to her new palace.
“Call me the minute you know what day she’s moving in,” I said. “I’ll send a plant to welcome her.”
Barbara and I spent that evening and Sunday morning sorting through the rest of Mom’s stuff. I hated discarding parts of Mom’s life as if they had no worth. I convinced myself I could use many of Mom’s things at my house, even though I had not yet unpacked all the boxes I’d brought home to Miami from her condo two years earlier. I filled Daddy’s Vermont Academy trunk full of pots and pans, other kitchenware, and Mom’s collection of Beatrix Potter figurines—Peter Rabbit, Jemima Puddleduck, Benjamin Bunny, Mrs. Tiggy-Winkle—and addressed the trunk to Florida. I convinced Barbara to take several small furniture pieces to hold for me until I could arrange to ship them.
Barbara was more practical. She chose only a few items—the huge Chinese porcelain bowl that Great Uncle Homer had brought back from the Far East, a small side table she needed for her guest room, and a framed photograph of Mom as a young woman. The filing cabinet with Mom’s paperwork also went to Barbara’s house, minus the files I would need to work on Mom’s taxes next April.
Barbara called Habitat for Humanity on Monday to donate the rest of the furniture. The following week, she saw Mom’s living room in the window of the ReStore. The week after that, it had gone to a new home.
Mom moved into Seasons on Wednesday, October 7, 2009. She told Barbara, “It looks nice.” Then she asked, “Is this where I live now?”
Mom asked what had happened to her apartment, and all her other things. Barbara explained, and then I explained again when I talked to Mom on the phone the next day. She told me everyone at Seasons was very nice, but she still hoped she could go back to her apartment someday. Two days later, she was back in the hospital.
On her second morning at Seasons, Mom got out of bed early and fell flat on her face. Because of cuts on her forehead that needed stitches, the Seasons staff called an ambulance. Barbara and Phil met her in the emergency room, and, as usual, she said she was fine, and didn’t have any pain at all. The medical record described her as “pleasantly demented,” and noted that she knew her name and where she was, but not the day, month, or year.
“They did a CAT scan of her brain and saw a subdural hematoma, meaning some bleeding between the brain and the thin membrane that covers it,” Barbara told me. “But the bleeding may or may not have been caused by her fall, and could easily have been there since an earlier fall.”
“Was she dizzy or lightheaded?” I asked.
“Nope, she seemed fine. The ER doctor offered to send her to the trauma center, where they might decide to treat the bleed surgically, but I told them not to. I told them we did not want any aggressive treatments, and definitely no surgery.”
“Good. That’s what Mom wants—or doesn’t want, I mean. So, is she back at Seasons?” I asked.
“No, they admitted her for observation, maybe a day or two. I’m not worried,” Barbara said.
“I just don’t know what to do about this constant falling,” I moaned.
I cursed the doctors who had convinced me to implant that pacemaker. I couldn’t see that it was doing her any good, at least in terms of her falls, and I was afraid the surgery had accelerated her decline. I blamed myself. This did not seem like the best life possible for Mom.
Barbara said that Letty, the head nurse at Seasons, had been very apologetic, and promised they would watch Mom more closely.
“But as we know, she can fall even when someone is right beside her,” I replied.
Two days later, Mom was back at Seasons, and she told Barbara it was good to be home.
“Home? That sounds good,” I said.
“Yeah, maybe that little trip to the hospital had some weird effect, because she seems to be taking to Seasons now,” Barbara said, filling me in. “She looks horrible—scabs on her nose and forehead, and two black eyes. But she barely remembers the fall, and is constantly surprised when people ask her what happened.” Barbara chuckled. “It’s actually pretty funny.”
I called Mom every other day, and it usually took two or three tries before I reached her. An email from Barbara explained that Mom was staying busy.
The other day, I ran
into Madeleine, the activities director at Homeplace. She said that Mom has been participating in everything for several days—even bingo! They’re having happy hour today. Do you suppose they actually serve liquor? It sort of scares me, but mostly I think, “What the heck?!”
All in all, it seemed like Mom was less aware of everything, including her own decline and shortcomings. She was better for it, and I was grateful—finally, a good side to her worsening dementia.
Barbara also sent great stories about the reemergence of Mom’s sense of humor and sociability. Dena was with Mom at dinner one day, sitting next to a man who used to be a preacher. He asked Mom if she wanted to go to heaven, and she replied that she’d rather be in hell with her friends, smiled, and then said she didn’t believe in heaven or hell. The preacher said he’d never met anyone who felt that way. “Well, now you have,” Mom said. Barbara said she felt bad for the preacher, except she was pretty sure he forgot all about it in a matter of minutes.
A few days later, Barbara went to Seasons to pick up Mom and take her to see Hamp for a haircut. Both Barb and Mom had been going to Hamp’s shop for years. Mom had forgotten all about her haircut. She was out with the gang having lunch at Paula’s Pizza, and barely got back in time for her appointment.
During her haircut, I asked Mom whether she had enjoyed her lunch, Barbara wrote. She told me it was not a good place to go for Chinese food. I told her that made sense, because it was a pizza place. “Oops, slip of the mind,” she said, and laughed. Later, Hamp told Mom she must have been a firecracker when she was younger. She said, “Depends on who I was firing at.” Barbara wrote that she laughed herself to tears.
The Seasons staff really stepped up their game with Mom, checking on her every thirty minutes, all day and all night. Whenever possible, they stationed an aide in her room at night to make sure she would not get out of bed by herself. We also started asking about a bed alarm, or a hospital bed with railings they could raise at night. The nurses seemed to think that either one would violate restrictions on the use of “restraints.” Nursing homes had been subject to penalties (based on state inspections) for overuse of restraints, the implication being that they were using either medication (chemical restraint) or physical restraints rather than more staff-intensive ways of controlling patients who were disruptive or tended to roam. In this case, we wanted the restraints, and felt they would improve Mom’s safety. We took our request to Kathy, the director. She said they preferred not to use hospital beds or alarms.
Through October and November, Mom fell a few times, but with no serious injury. Since every medical record indicated osteoporosis, it seemed miraculous that she never broke any bones. Letty told us the policy at Seasons was not to send residents to the hospital unless they were severely hurt or needed stitches. They understood how distressing it was for everyone to spend time in the emergency room.
Since the falls happened mostly at night or early in the morning, we asked again about getting a bed alarm or a hospital bed. We were told it was not permitted, with another vague reference to regulations.
Klein and I visited for Thanksgiving. We rented a PT Cruiser because the seats were level with Mom’s hips, and easier for her to get into and out of than a model with bucket seats. Barbara made a traditional feast with all the trimmings. I cut Mom’s turkey for her, but she fed herself, and ate a huge slice of mince pie for dessert. By 7:00 p.m., she was tired.
Barbara and I took her back to Seasons, leaving the husbands to clean up the kitchen. As soon as we got to Mom’s room, Letty came to say that an aide would be in shortly to help Mom get ready for bed.
“We’ll do it,” I said.
“No, you girls go ahead and visit. I’ll see you tomorrow,” said Mom.
“Melanie and Klein are coming to take you out to lunch tomorrow,” Barbara said as she wrote FRIDAY – Lunch with Melanie and Klein on Mom’s white board.
Barbara and I hugged her. It had been a good day.
The next day, Klein and I drove over to Seasons to take Mom to lunch and for a drive around the marina nearby. When we arrived around 11:30, Mom’s room was empty. The aide told us she was in the activities room. We found her sitting in her wheelchair at the head of the table, playing bingo with about forty other residents. Her card looked pretty full, but no bingo yet. She said a quick hello to Klein and me.
“Ready for lunch?” I asked.
“Not yet,” she said, “I want to finish my game.”
At first, I was annoyed, but I quickly realized how good it was that she preferred living her life to leaving it for lunch with us. That was the best it could be. And after the game, we went out into a cold but sunny day, and enjoyed a lunch of hamburgers and french fries.
During the Thanksgiving trip, Barbara and I congratulated ourselves on pulling off the move to Seasons. Mom seemed happy. When she had lived at McCarthy Court, she had stayed in the apartment and watched television all day. At Seasons, she was active. She told Barbara, “I don’t like to just sit and suck my thumb. If I get an opportunity to get up and go, I’m going.” That sounded like my good old mother! Moreover, the Seasons staff found her delightful.
“She makes us all laugh,” Letty told me. “We keep her near the nursing station for much of the day so we can keep an eye on her. Sometimes, she still tries to get up, but we stop her, and then we scold her. She just smiles and says she forgot again.”
In early December, Homeplace put on a Christmas pageant. Mom practiced for days with the other members of the choir. On the day of the pageant, all the participants sported Santa hats, elf hats with ears, or antlers. Barbara and Dena sat in the audience and waved to Mom.
Mom grinned the whole time, except when she had to look down at her music sheet to find the words to the songs, Barbara wrote in an email. It definitely reminded me of our school pageants, and I mean the lower grades! It was wonderful.
A week later, Mom fell again. She tried to get out of bed at around 9:45 p.m., fifteen minutes after she had been checked on. She bumped her head pretty hard, and needed stitches for a cut on her arm.
“I yelled for help,” Mom told Barbara, “and they came right away.” The night nurse had called an ambulance, then called Barbara. She and Phil met Mom at the emergency room.
Barbara told the ER doctor that Mom really could not walk without assistance. “But she doesn’t believe it,” Barbara explained, “so she has already fallen at least three times this month.”
“I feel like I should just tape one of the discussions with these ER docs,” Barbara told me on the phone when she called from the hospital. “I could play it the next time Mom is brought in.”
“It’s always the same,” she continued. “Mom denies any pain—well, actually, this time, she says the back of her head hurts, and she does have a big goose egg there. The doctor always says she’s in good shape for a ninety-three year old; she’s not dizzy or lightheaded. They do a CAT scan and report on her brain bruise (the subdural hematoma), which is actually getting smaller. And she always needs something minor—stitches, or whatever. This time, it’s stitches.”
“And her skin is really thin, so it’s hard to stitch up, right?” I added.
“Yep.”
“I guess you’re pretty tired of it all.”
“Yep.”
“I really think we have to raise the issue of the bed alarm again. This is getting ridiculous. I’m going to call Kathy tomorrow,” I said.
“Okay. I’m too tired to think about it right now. Phil’s here. He always insists on coming with me for these night runs. We’ll wait for her to get stitches, and then for an ambulance to transport her back. It’s just too hard to get her into the car.”
The next day, Barbara wrote to report on the end of the evening.
Somewhere around 1:30 a.m., as the EMTs were wheeling Mom’s gurney back in the front door at Homeplace, she merrily sang out “I’m alright, I can walk from here.” I thought I would die laughing—right after I punched her lights out.
Oh, my God, I wrote back. You’re channeling her sense of humor. I need to get up there and give you a break!
Barbara and Phil had planned to get away for a few days the following week, when they would drive to Northern Virginia to visit with Phil’s son and his girlfriend over the Christmas holidays. Before she left, Barbara got permission for a wheelchair alarm. Letty thought that would work better than a bed alarm for training Mom not to get up on her own.
The alarm looked like a large heating pad, and sat under Mom’s wheelchair seat pillow; the electric cord wrapped around the chair leg and plugged into the nearest outlet. Barbara had bought the alarm at the medical supply store, and delivered it to Seasons a few days before her trip. Letty had told her to go and have a wonderful time. They would take good care of Mom.
On Christmas Eve, I called Mom when I knew she was with Dena. I had sent a card and her favorite pears from Harry and David, my go-to source for gifts of fresh fruit and snacks. We reminisced about Christmas Eves when Barbara and I were growing up. We always decorated the tree, and then our good friends the Zayannis would come over for cookies and Mom’s homemade eggnog.
“Dena brought me some eggnog,” Mom said.
“I’ll bet it’s not as good as yours was,” I teased.
“Yeah, no rum,” she replied, and I laughed.
I reminded Mom that I’d be visiting in just under a month to celebrate her birthday.
“Oh, good. We can have a hug,” she said.
I emailed Barbara and told her that Mom seemed to be doing great.
The next day, Christmas afternoon, Mom left an angry message on Barbara’s voicemail.
“Barbara, call me right away. I’m being held prisoner.”
Holding the Net Page 18
