“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.
Chapter 18
AS I WALKED INTO BEECHWOOD ON MONDAY, AUGUST 31, 2009, I wondered if Mom would remember it was her wedding anniversary—sixty-eight years since Mom and Daddy had married. She had been without him for fifteen years. When I got to her room, I forgot all about it.
Two aides—Nelly and one I hadn’t seen before—were bustling around the room. Nelly was helping Mom get dressed, and the other aide was piling Becky’s clothes onto a wheelchair and gathering her toiletries in a plastic tub. Becky looked up and smiled for the first time since we’d met.
“I’m moving to the rehab wing,” she said, telling me the room number. I promised to visit her later that day.
“Miss Mary, I mean Miss Eleanor, is going to a new room later today,” Nelly told me, “but right now, they want her down at the rehab room.”
I asked if I should take her down there. Nelly said no, the therapist would come and get her. Just a few minutes later, Rose walked in and introduced herself. She sat on the bed and talked directly to Mom. I liked her immediately.
“In a few minutes, we’ll go down to the rehab room and do some physical testing. Then later, probably after lunch, we’ll check out your memory and a few other things,” she said.
“I’m not walking very well, but I’ll try,” Mom said. I wanted to hug her.
“That’s okay,” said Rose, “It’s our job to get you stronger. Shall we go?”
Mom nodded. I asked if I should come, and Rose said it would be better for me to wait in the room.
While they were gone, I went to find Becky. She greeted me warmly from a lovely upholstered chair with matching ottoman. I looked around her new room. Was I still at Beechwood? The sunny yellow walls looked freshly painted. The bed was made up with a colorful spread. On the facing wall stood a cherry wood veneer multipurpose unit—closet, small desk, three drawers, and an entertainment center, complete with flat screen television. I told Becky it looked like she had moved to rehab heaven.
“Isn’t it nice?” she asked.
“Very different from the other wing,” I said, nodding.
Now I wanted to know when and where Mom would be moving. I found the administrator.
“Your mother will move later today to a single room. It’s still in the long-term care wing, right next to the nursing station,” she told me.
The housekeeping staff was cleaning the new room when I stopped by to check it out. It was more spacious than her current room, but all that space looked extra drab now that I had seen the relative elegance of the rehab wing. It turned out the renovated rooms were first come, first served, and Becky had arrived an hour ahead of us. Oh, well, I thought, at least Mom will still have the nurses and aides she is getting to know. Anything that might ease her transition seemed like a plus considering all that she and I (and Barbara) had been through in the last ten days—her fall, eight days in the hospital, surgical placement of a pacemaker, and the move to Beechwood. No wonder she seemed a little shell-shocked. And no wonder I did, too.
As I came out of Mom’s new room, I saw Rose pushing her in her wheelchair down the hall.
“How did it go?” I asked.
“I couldn’t do very much,” Mom said. “You did just fine,” said Rose. “We’ll have to wait until we finish the assessment. Right now, I’m thinking we’ll plan on about two weeks of rehab.”
“That much, huh?” I said. Even after seeing her so weak, even after helping her to the bathroom, cutting her meat, and watching her hand tremble as she brushed her teeth, I hadn’t quite absorbed the enormity of Mom’s debility. Then I remembered that the rule of thumb for the elderly is a week of rehab for every day in the hospital—that would mean eight weeks for Mom! Now I wondered whet
her two weeks would be enough.
Nelly came and helped us move Mom to her new room. “I like this room better,” Mom said, “but where is the TV?”
“I promise I’ll go get the TV this afternoon.” So predictable, I thought, and smiled. I didn’t tell her that it might take a few days to get it working.
While Mom went to lunch, I filled out the maintenance request form to get the television cable hooked up, and called the number I’d been given for the cable company. I set up an account for Mom, with the bills to come directly to me. I begged everyone to do whatever they could to make this a rush installation.
From then on, the week got better and better. The rest of the assessment confirmed the need for physical therapy to get Mom walking again with her walker, and occupational therapy focused upon trying to improve her cognition and memory. The care plan called for two hours of therapy per day for two weeks, and then reevaluation. I knew the nursing home had to have evidence that Mom could improve in order to get paid by Medicare, so I was hopeful she really would improve.
My pleas to the television gods were heard, and by Tuesday afternoon, Mom had access to her favorite shows. Also on Tuesday, Dena (whom Barbara and I had dubbed “our other sister”) started to visit for two hours every day. She entertained Mom with chit-chat, took her outside in the wheelchair, and attended to the extra grooming Mom loved—trimming toenails, mini-manicures, and getting her hair washed at the Beechwood salon, a tiny room with a sink and hairdressing chair. It really seemed that having Dena back in her life on a regular basis made Mom feel more comfortable in her new surroundings.
Now I had lots more freedom. While Mom went to rehab, while she was with Dena, and while she was entertained by her shows, I could get some work done, spend an hour or so at the gym, or do errands. I used some of that time to look into options for care once Mom went back to her apartment at McCarthy Court. I wasn’t at all sure how much help she would need, but I knew it would be more than she’d ever had before—maybe even twenty-four hours a day.
First, I contacted Valerie at Seniors Choosing to see if they offered round-the-clock care, and what it would cost. Then I set up a meeting with Diane at McCarthy Court. It was time to give her a detailed update on Mom, and get some information. I didn’t even know whether McCarthy Court allowed residents who needed round-the-clock assistance.
Diane greeted me with a hug, and that simple expression of concern and support raised a lump in my throat. We pulled chairs up to the round table in her tiny office. I opened my “Mom Notebook” where I wrote down everything I needed to remember, and turned to the page where I had jotted down some questions.
Diane asked, “How’s your mom doing?”
Suddenly, I was sobbing.
“Well, at the moment, not very well.”
Diane pushed the tissue box toward me.
I apologized, and she said it was understandable.
“It just seems to be happening so fast,” I said. “I know she’ll get better, but I’ve never seen her so weak and listless.”
As I calmed down, I filled Diane in on the pacemaker, the plan for at least two weeks of rehab, and our concern that Mom would need a lot more care once she returned home. It turned out there were people at McCarthy who had round-the-clock caregivers, and Diane had information on how to arrange the services. She said we should also consider assisted living at Homeplace. I reminded her that Barbara and I had tried to convince Mom to move to Homeplace eight months ago, and it had been a fiasco.
“I remember,” she said, “but a lot can change in eight months for someone like your mom.”
She was so right. Mom was on the tail end of the growth and development curve. Between the ages of ninety-one and ninety-three, Mom had lost ground as quickly as a child gains skills and abilities between the ages of one and three. Mom wasn’t “growing” old; she was wilting.
“Anyway,” Diane continued, “We’ll help you make the decision. I’ll visit your mom at Beechwood. I always visit our residents when they are out for rehab. And I’ll talk to the rehab staff there. Some of them also work at Homeplace. We’ll all get together and recommend what we think would be best for your mother.”
“So, is it possible that she would not be allowed to come back to McCarthy Court?”
“Well, it might be that we would require a certain level of supportive care to have her back here. What we can do is help you understand the options.”
I was crying again. We had a lot to figure out, but we would have help.
Two days later, on Thursday afternoon, Barbara and Phil came home from vacation. I was flooded with relief. Was that how she felt whenever I showed up? If so, I needed to visit more often.
On Friday, Barbara and I arrived at Beechwood just as Mom was finishing up her morning rehab session. We found her walking down the hallway with her walker as the therapist held her up via a heavy, woven harness, and an aide following behind with a chair so she could stop to rest. That sad little parade made me so happy. She was walking—not well, and not much, but it looked good to me after only three days of therapy.
“I get pretty tired,” Mom said when we were back in her room.
“That’s okay. You’re improving,” I said.
I showed Barbara the room, the clothes I had brought over, and where the laundry basket was (since we’d agreed to do Mom’s laundry at the house). I introduced her to Nelly, who had come to help Mom to the bathroom.
I told Barbara I’d show her how to help Mom on and off the toilet. “You don’t have to do it, but the aides aren’t always available, so sometimes it’s easier. You kind of get used to it,” I said.
We had about an hour before lunchtime, so I suggested we go outside on the porch. It was hot, but shady, and Mom wanted to keep her sweater on. Barbara and I sat in rockers on either side of Mom, and Barbara talked about her trip—seeing her friend Dawn, the vast greenness of Nova Scotia, the sand dunes and spectacular seafood on Prince Edward Island. Mom listened and nodded, but still seemed distant. After a bit, she asked if it was time for lunch.
“I guess all the exercise makes you hungry, huh?” I joked. “Yes, I guess it does,” Mom said with the first little smile I had seen in over a week. She was getting better, and would get better still.
While Mom had lunch, I gave Barbara a tour of Beechwood—the dining room, where we dropped Mom off; the living room with the aviary; the renovated rehab wing that I had come to call “Oz” because it was so bedazzling after the grayness of the long-term care wings; the physical therapy/rehab room; and the nurses’ station. Along the way, I introduced her to the therapists, nurses, and aides I knew.
“I will never be able to keep all those names in my head,” Barbara said.
“Well, you don’t have to, but it helps to know a few of them. It gets easier the more time you spend here.”
“Do you think I need to come every day?”
“I did, at first. Then again, I don’t have any other life here in New Bern. I think it’s important to visit often, so everybody knows that Mom has someone watching over her. But with Dena coming and all, you probably don’t have to come every day, and you certainly don’t have to stay for hours and hours. Now, I just come late morning, and leave when Dena comes in the afternoon. Then I come back for an hour in the early evening.”
I didn’t know what, if anything, Barbara thought about my speech. What I thought was that I’d been spending way too much time at Beechwood. If Mom had lived near me, I would have given up my own life to tend to her. It was how I did things in general, and in this specific situation, it was my way of showing love and devotion.
Barbara was not neglectful—far from it. Before the big fall, she had been calling Mom every day, shopping for her, stopping by often, and managing the other caregivers. She slept with the phone by the bed, and worried each night that there might be a call to go to the emergency room. I had taken to calling her Saint Barbara. I found a picture of an ancient Saint Barbara, and sent it to her.
> Barbara also lived her life. She kept some balance. She was able to disconnect.
“I don’t really think about her as Mom anymore,” she once told me. “I think of her as a little old lady who needs my help.” Was that because Mom was so changed, or because it protected Barbara from some of the worry and heartache? I suspected it was little of both.
On Saturday, we visited Mom, and we also went to the movies and saw Julie & Julia with the incomparable Meryl Streep. That evening, we cooked lentil soup, and the next day, we brought some to Mom for lunch. She ate every bit, and asked for more.
After Sunday lunch, I drove back to Raleigh-Durham and flew to Cape Cod, where Klein and I had scheduled some vacation time. I didn’t sleep on the plane, even though I was exhausted. Barbara had thanked me over and over for giving her much-needed time off. Her sincere gratitude just made me feel guilty for leaving her to continue doing what she had already been doing for two years, especially now that Mom’s health had taken such a downward turn.
I ruminated on the events of the last two weeks. I understood the emotional strain, but I hadn’t expected to feel so powerless. I had always believed that knowledge is power, and I had more knowledge about aging and the healthcare system than most people. I realized that my knowledge was abstract and academic—useful, but only in a limited way, because it was disconnected from real life. Now I was gaining experience. It was painful, potentially more useful, and still incomplete.
One question in particular nagged at me. Had the pacemaker made Mom better or worse? I had no confidence that I had made the right decision. I never would be sure.
Chapter 19
AFTER THE MUGGINESS OF NORTH CAROLINA, I welcomed the cooler, sunny days on Cape Cod. I caught up on work and sleep, all the while thinking I should have stayed in New Bern. Even though there was little I could do to help Mom, I was now acutely aware of everything Barbara had on her plate—a full-time job that required her to be at her home computer for much of the day while also keeping tabs on Mom, who would be needing more and more attention.
Holding the Net Page 16