Mom with the delightful Dena at Homeplace on December 31, 2009. Photo taken by Homeplace staff.
Chapter 21
MOM IS NOT HAPPY,” Barbara told me about a week before the new year began. “The Seasons staff is keeping her in the common areas so they can watch her constantly. She still doesn’t remember that she can’t walk, so she tries to get up and the alarm blasts her back in her seat.”
“Why is it so loud?” I asked.
“Because Mom’s hearing is so bad, and getting worse,” Barbara groaned.
“Well, I’ll be there in a couple of weeks. I have some meetings at Duke, in Durham, and then I’ll drive down to New Bern for several days.”
“It’ll be good to see you. Meanwhile, I sent a message to Valerie at Seniors Choosing. I want to get more hours with Dena. When she’s there, Mom can stay in her room, and the two of them get along great. I go over almost every day, but I can’t stay long. I have to work. And I can’t stand to be there, doing not much at all, hour after hour.”
“There’s no reason you should,” I said. “Get Dena to go. And I’ll hang out with her when I’m there, too.”
For a week or more, Mom’s bad mood escalated. Barbara wrote that Mom seemed somewhat depressed, but mostly just angry. Mom complained she was being punished unjustly. She hadn’t done anything wrong, but was forced to sit near the front desk. I called to see if I could calm her down.
“I don’t get it,” Mom said. “Why can’t I get up and walk around when I want to?”
“Because your balance is no good, and you fall,” I said.
“I haven’t fallen in ages,” she said, confirming what Barbara had told me. Mom had no memory of her falls.
“Yes, Mom, you do fall, and even get hurt. Look in the mirror. We’re just trying to keep you safe,” I said.
“That doesn’t cut it,” she snapped.
I tried to change the subject, telling her I was looking forward to my trip.
“Well, I hope you can take care of this when you’re here.”
I told her I would do my best.
Barbara recounted similar conversations with Mom. “I explained that the alarm and sitting near the desk are for her protection. She gave me the stink eye and said, ‘So you say.’”
“Jeez, I guess this could be worsening of her dementia. People with dementia can get really nasty and combative. Is it that bad, do you think?” I asked.
“I don’t know. She’s plain old pissed. I really can’t blame her, but it’s hard to see her feeling so low after things were good for so long.”
Barbara said they were due to see Dr. S. in a few days. She planned to ask him about upping her antidepressant, or maybe even prescribing something else.
Suddenly, my hospice work brain slipped into gear. “Oh, wait!” I exclaimed. “Have him check for a urinary tract infection (UTI). I just remembered they can be weird in older people—none of the usual symptoms, but often a change in mood.”
A few days later, Barbara wrote that Mom was much better—all the way back from Mr. Hyde to Dr. Jekyll. Dr. S. had increased her Lexapro antidepressant, but it was too soon to be seeing any effect. I wondered if this was the beginning of a series of mood swings.
When we next spoke by phone, Barbara recounted a conversation with Mom about her upcoming ninety-fourth birthday.
“Don’t take this wrong,” Mom had said to Barbara, “but I am ready to go anytime, and I hope it happens when I’m asleep.”
“I hope she gets her wish,” I said.
“I agree,” Barbara replied.
“I told her I was glad she was getting such good care in the meantime, and she said she liked Seasons very much, and liked having all her beautiful things around her.”
It was everything I needed to hear at that moment—like a ray of sun poking through gray clouds.
“Every time the phone rings, I think it might be you calling to tell me she’s gone,” I said. “But then I talk to her, and it seems it could be a long time.”
“Yeah, I wish we could know how long she has.”
“Not in our hands,” I replied.
Barbara made arrangements to throw a party for Mom’s birthday on January 16, 2010. She reserved the private dining room at Homeplace and invited the Seasons staff, Dena, Jamie (who filled in on Dena’s day off), Sophie, a few other friends from McCarthy Court, and Hamp, the hairdresser. She bought birthday plates, napkins, and party hats, and baked Mom’s favorite sour-milk chocolate cake.
The night before the party, Mom fell. She hit her head, and opened a large cut over her left eyebrow. She and Barbara met at the usual place—the Carolina East Medical Center emergency room—and went through the usual song and dance. Mom denied any pain, and made the doctor laugh by asking, “Am I going to make it?” Barbara declined a CT scan, making it clear that Mom wanted comfort measures only. When pressed by the doctor, who was concerned they might miss something, she told him to look up the records of Mom’s previous subdural hematoma and the decision not to treat it.
“Even if you find something, we will not want treatment,” Barbara told the doctor.
He numbed Mom’s forehead, and used nine stitches to close the v-shaped wound.
The medical record for that night described the usual healthcare system response to any fall with a face laceration—recommendation for a CT scan and for follow-up with plastic surgery to minimize scarring. It fell to Barbara to calmly rein the doctors in more than once with reminders about Mom’s age, her mental and physical decline, and her personal choice to have comfort measures only.
The photos from the birthday party show Mom sporting a big white bandage and a spreading bruise on her forehead as she sat at the head of the table, enjoying her birthday cake and good wishes from her friends. Saint Barbara looked tired.
This fall made me angry. With the installation of the chair alarm, Mom had stopped falling during the day. It only seemed logical to get something similar for nighttime. I was tired of vague references by the Homeplace managers to regulations that prohibited bed alarms or hospital beds. I was determined to read the North Carolina regulations for assisted living facilities myself, and, if necessary, contact the state health department to petition for an exception. Heck, I was going to be in Raleigh in a couple of days. I could go to the offices of the Department of Health and Human Services in person! I was sure I could make a cogent argument that some kind of nighttime restraint was essential to Mom’s safety.
When I found the regulations (fairly easily, on the Internet) for Licensing of Homes for the Aged and Infirm, I was furious with myself for waiting so long. The only requirements were a doctor’s order for the use of a hospital bed with rails, and patient or legal guardian permission to use this form of restraint. Barbara and I both had Power of Attorney documents, and everyone at Seasons treated us if we were Mom’s legal guardians. This was going to be easy.
I emailed a copy of the regulations to Barbara so she could talk to Kathy, the director of Homeplace, and Letty, Head Nurse at Seasons.
Tell them we’re going to get the order in a few days, when Mom has her follow-up appointment with Dr. S., I wrote.
Mom rarely used her walker anymore, so Barbara and I wheeled her to and from the car in her wheelchair to transport her to the doctor’s office. She hugged me and seemed to be in good spirits, though quiet and somewhat withdrawn. She greeted Dr. S. and answered his questions about her stitched-up forehead.
“Does it hurt?” he asked.
“No.”
“Do you remember falling?”
“Not really.”
“Remember?” Barbara prodded. “I met you at the ER?”
“Oh, yeah. That was a while ago,” Mom said.
“Well, you seem to healing well,” said Dr. S.
Mom smiled.
Barbara and I changed the subject to our request for a hospital bed. Barbara explained to both Mom and the doctor that the railings would prevent her getting out of bed on her own—the only way we co
uld see of preventing more falls.
“I think it’s a good idea,” said Dr. S., as he turned to face Mom. “So, you’ll be getting a new bed.”
“Alright,” Mom said.
As he wrote the order, indicating that the railings were to be used only at night or when Mom napped, I asked quietly what he thought about Mom’s being so detached.
“She doesn’t seem like herself,” I said. “Do you think she’s had a little stroke or something?”
“Maybe. But this is just how it is, I think. There’s nothing we need to do.” he replied.
The truth had a Zen-like simplicity that soothed me.
After the consultation, we all went back to Barbara’s house for dinner. I held the kitchen door open while Barbara and Phil each put an arm under one of Mom’s arms, and all but carried her up the steps. Once settled in her favorite chair, Mom closed her eyes and napped while Barbara and I put dinner together. I fixed a plate of cheese and crackers and poured some wine for the three of us, diluting Mom’s portion about one-to-one with water. We enjoyed our aperitif while watching one of Mom’s favorite TV shows—a M*A*S*H rerun—with the sound turned up so she could hear. The days of our witty banter over cocktails were over, but it still felt homey and companionable.
Just after 7:00 p.m., Mom said she was tired and ready to go back home. I loved hearing her refer to Seasons that way. I took her back on my own, and helped her get ready for bed. While she brushed her teeth with the new electric toothbrush that made it much easier for her, I noticed the box of Depends sitting on the back of the toilet—but Mom had been wearing her usual nylon panties under her clothes. I decided to ask her.
“Mom, do you usually wear these Depends?”
“Only at night,” she said, as if it were the most natural thing in the world.
I helped her use the toilet, then slipped on the padded underwear.
As I tucked her in, I reminded her about the hospital bed that would come in a few days.
“Tell me about it tomorrow,” she yawned.
I hugged her.
“I’m so glad you’re here,” she said. “Me, too.”
The next morning, Barbara and I took a short walk around her neighborhood. Ice had formed on some small puddles, and I had to borrow one of her fleece jackets to keep warm. I decided I would stay in with Mom and maybe watch a movie. I hoped the next day would be warmer, so Barbara and I could take Mom out for lunch. I wanted to pamper her, to make up for all the time I wasn’t around.
On the way to Seasons, Barbara and I stopped at the medical supply store and ordered Mom’s hospital bed, which would be delivered the next day. Because we had the doctor’s order, Medicare would pay part of the rental cost. I picked up some sandwiches for Mom and me, then Barbara dropped me off at Seasons for a nice, long visit.
Mom and I enjoyed a picnic in her room. I chattered about Klein, work, friends of mine she knew but barely remembered, and vacations Klein and I might—or might not—take in the coming year. She listened, nodded, and occasionally asked how long I was staying in New Bern. We looked at pictures from her birthday party. I asked her about her cut, but she had forgotten about it.
After lunch, I found an old movie on television, but had no idea what it was. Within minutes, we were both dozing. After a brief nap, I wandered down to the dining room and made myself some tea. While Mom slept in her chair, I straightened up her drawers and closet, pulling out several items that had food stains. I figured I’d help Barbara by doing some laundry. It was getting harder to keep Mom looking neat and tidy, but I was sure it made her feel better. I know it made me feel better.
Dena arrived at around 3:30, and we visited and joked about her being Mom’s third daughter. When Mom woke up, Dena made her some tea, and we all talked. Well, Dena talked—entertaining us both with tales of her travels to see other clients, and mishaps at the grocery store. I laughed, sometimes feeling truly amused. Mom smiled but remained quiet, as if hanging out at the edge of the party. After an hour or so, I called Barbara to pick me up.
It always felt so strange to leave Mom “alone.” Of course, she wasn’t alone. Dena was there, and Mom would be going in for dinner soon—but part of me thought we should all be together—me, Barbara, and Mom—when we were in the same town, the way it had been at her condo in New Port Richey. I knew she was in the best possible situation for her at this point in her life. Maybe I just didn’t want that to be so.
“Mom,” I said, “Barbara and I will come get you for lunch tomorrow, if the weather is good. Okay?”
“I’d like that,” Mom said.
I wrote a note about the lunch plan on the white board hanging next to Mom’s closet, hugged Mom and Dena, and left.
Mom loved going to lunch at Sweet Tomatoes. She’d first been to one of the restaurants in the 1980s, when she had visited her brother in California. She’d even written to the company, telling them they should open one near Tampa—and when they did, she took credit for having given them the idea! New Bern didn’t have a Sweet Tomatoes, but there was a new place that featured a similar menu of soup and sandwiches with a salad bar. Mom loved it. She and I had lentil soup, Barbara chose the gumbo, and we all shared a turkey club sandwich. Mom spilled a little soup on her sweater, but then again, so did I.
As we wheeled Mom into her room at Seasons, the first thing we saw was the hospital bed, and it looked awful—all the bars were up, and the mattress was covered with a thin plastic-lined cotton cover.
“Where’s my bed?” Mom cried.
“This is your new bed,” I said, trying not to sound as freaked out as I felt. “Remember, Dr. S. wanted you to have a hospital bed.”
“That’s not true. No one told me about this,” she moaned.
I noticed Mom’s sheets and bedspread hung across the back of her chair.
“Here, Barbara and I will make up the bed with your sheets. Let’s see how it looks.”
Barbara helped Mom to the bathroom and then into her chair while I got busy making the bed. Mom propped her forehead on her hand, crying quietly.
“Everything is changing,” she said. “I don’t know what’s going on.”
Barbara finished up the bed while I hugged Mom and agreed with her.
“I know it’s hard,” I said. “Nobody likes change. But I think this will be a good change. I really think you’ll be more comfortable.”
Mom blew her nose.
“Well, that’s something that doesn’t change,” I said, imitating her loud nasal honk.
We all laughed, even Mom.
“And look at your bed now,” I said.
Barbara had lowered the railings, added the bedspread, and folded Mom’s handmade afghan across the foot of the mattress.
“It does look better,” Mom said, wiping her eyes and nose. “I’ll try it.”
We never heard another word from Mom about the bed. We did hear from the staff; they loved it. Mom never again tried to get out of bed by herself, probably because it was impossible with the railing up. She rang the bell, and an aide came to help. Barbara had made her last midnight run to the emergency room.
Throughout the rest of January and February, Mom continued to decline mentally and physically. I suspected a series of small strokes, called transient ischemic attacks (TIAs), in which clots or tears in small vessels cut off blood flow to parts of the brain. Twice, Barbara found her sitting in urine-soaked slacks, even after reminding the staff to take Mom to the bathroom regularly and dress her in Depends all the time.
“She keeps telling them to get her regular underwear,” Barbara told me.
“Just take away her nylon panties,” I suggested. “Replace them with Depends. Then the aides can honestly tell her that’s all there is in the drawer.”
It worked. Between the Depends and a regular toileting schedule, Mom stayed mostly dry.
I found it almost impossible to talk to Mom on the phone. She had grown too weak to hold the receiver up to her ear, and her speech grew slow and garbled. I star
ted sending her short notes and cards every other day. Dena called me from Mom’s room twice a week, holding the receiver to Mom’s ear.
“How you doing Mom?” I asked.
“Pretty goo’ for ole lish.” Even with her slurred speech, I recognized her upbeat answer—Pretty good for an old lady.
“Are you getting my cards?”
“I li’ fun culsh,” she answered, letting me know she still preferred telephone calls. Despite feeling reprimanded, I liked that Mom was still opinionated.
She didn’t know what day it was or what was happening in the outside world, but she didn’t care. She was happy. With a little coaxing, she’d participate in almost anything. She played catch in the common room as the recreation staff tossed around a small rubber ball. She attended bingo. Dena pushed her in the wheelchair pancake race.
One Sunday, Barbara went to visit Mom, and ended up staying two hours.
She had one of her “I hate being old” meltdowns, Barbara wrote in an email. She cried for about half an hour. I just let her cry it out, and wiped her face with a damp towel. It seemed like a good catharsis for her, though I needed a stiff drink when I got home.
There were more good days than bad, and when it was warm, either Barbara or Dena would take Mom outside on the Seasons porch.
Mom sat with eyes closed, her face turned to the sun. She looked positively blissful, Barbara wrote in an email.
Mom seemed to be living in the present, moment to moment. I wanted that for her. Heck, I wanted that for me.
Barbara joined Mom for the Seasons celebration of St. Patrick’s Day 2010, complete with green balloons, tablecloths, and green cake with green icing. In a photo from that day, Mom exudes Erin go Bragh (Ireland forever)—a cheerful leprechaun in a tacky green plastic bowler. Her back is straight, her head is up, and she’s smiling her beautiful smile right into the camera. Mom forever!
In just two weeks, we would be calling in hospice care.
Mom on St. Patrick’s Day, March 17, 2010.
Photo taken by Homeplace staff.
Holding the Net Page 19