Hold, hope, repeat

I was finishing the hem on one of the curtains when my phone rang last Friday, a call from Canada. I've known in my heart for at least a year that such a call might come at any point. But I hadn't thought about what I'd do when it did come. At least, not recently.

It was my grandmother, my aunt said. She was in the hospital, some kind of infection -- a lung, her bladder, her kidneys. It wasn't looking good. Was my mother around?

I told her she wasn't -- Troubadour Mom was actually visiting Almost Dr. Sis -- and gave my aunt their cell phone numbers.

That's where it got complicated.

Some time later that night, while D and I were grocery shopping, the calls started coming in -- Troubadour Dad (also visiting my sister) and Almost Dr. Sis, trying to figure out what exactly my aunt had told me about my grandmother's condition, updating me on my mother's plans to fly to Toronto right away. Was I planning to go?

I didn't know.

"Of course you should go," said one voice in my ear as I stood immobilized in front of the meat counter. "You want to be there."

"But are you really up for this?" said another, the one I've been trying to listen to more. "Can you handle it?"

"Well," I said to them both, "what does it entail?"

It was never clear for three days afterward. More calls, back and forth, trying to assess how serious my grandmother's condition was, whether there were imminent end-of-life decisions on the line. She was fighting the infection but unable to eat, or so it seemed. Not having an answer, I held tickets to get me to Canada on a red-eye every night of this week, since I couldn't get updates on the situation until the end of each day. If this was indeed the end, I did want to be there, to bear witness -- my grandmother was unlikely to recognize me or respond to much, given her condition, so being there for her was sadly not the primary reason to go.

But being there would also mean getting drawn into family politics, volatile and difficult to navigate (in crisis or at any other time), and the associated pressure to look after others first before myself, as I'd always been taught. This, in a larger sense, is what I've been trying to disentangle myself from for so long: the familial forces that make any decision to act in my own interest so hard. The forces that have made me fearful of being a nuisance with my own needs, fearful of being hurt because I put those needs out there only to have them struck down. Stay or go, speak or keep silent, and for whom?

Last night, my grandmother was released to go back to her nursing home. Yes, she rallied and survived, to our relief. She still can't eat much, which is of great concern -- dehydration and the dangers that come with it will keep looming unless she's monitored closely, and the staff in her residence are spread thin. What concerns me more, though, is this battle of my own, selfish as it may sound. I didn't go because I couldn't bring myself to face my fears. It was too soon after I'd finally identified what those fears were.

But it kills me now that I was and still am in my own way, at such a crucial moment. I'm better than this. Or at least, I want so much to be.

Only connect ...

Even though I was gone for only a week and a day, this most recent trip felt much longer because so much happened during that time.

From Tuesday through Friday, I was in Toronto with Troubadour Mom and Newly Graduated Sis, staying with my aunt (the same one who put me up last August). The primary goal of the visit was to spend time with my grandmother, who has been in a nursing home since 2004 for Alzheimer’s.

Last time we saw her, Nga Po was still fairly responsive and could speak, albeit in short, repetitive phrases. She was fuzzier in the morning from the antidepressants she was put on, apparently because she would hit the caregivers when she didn’t want to do what they asked (take other medications, allow them to move her, etc.). But by her noon meal, she was reasonably alert, and just after her afternoon nap, she was most present. She would even laugh occasionally and could recognize some of her children.

This time, she seemed to have lost a great deal of her ability to speak, and the effort of trying to communicate in even nonverbal ways was exhausting for her. Every few minutes, her head would drop down and she would close her eyes like someone trying not to succumb to sleep. Feeding her was more challenging as well, as she seemed to be more prone to choking, and she often forgot she had something in her mouth (especially when she nodded off between bites) and then didn’t swallow. She is mostly on puréed foods, but she can still eat one of her favorite desserts, egg custard tart (see photo above), which we picked up specially at a bakery to see if we could whet her appetite. She seemed to like that. I have no idea what the plan is once she loses the ability to eat and requires tube feeding -- I don’t believe she has any kind of living will, but I also don’t know how the health care and legal systems in Canada govern her end-of-life care.

We didn’t expect her to recognize any of us this time, given her deterioration, but we came armed with things to help her reconnect with us. One of those things was stories she used to tell Troubadour Mom. NG Sis and I have heard them many times -- the ones about Nga Po running from the Japanese when Hong Kong was invaded during World War II, her husband spending their last $500 on fireworks when the news of the Japanese defeat came, running the family upholstery business and sewing curtains for the entire Peninsula Hotel, and on and on and on. Troubadour Mom did the retelling this time to jog Nga Po’s memory, and whenever she got stuck thinking of what to talk about next, NG Sis and I prompted her with other things we remembered Troubadour Mom telling us. Nga Po didn’t respond very much, but she did nod occasionally and let us massage her neck and back and hold her hands. When Troubadour Mom touched Nga Po’s face with her palm, Nga Po would lean into Mom’s hand and close her eyes like a kitten nuzzling into a soft blanket. It was so hard not to just enfold her in all of our arms as she seemed so starved for physical contact, but she probably wouldn’t have liked that, given that we weren’t familiar to her.

On the second afternoon we spent with her, she seemed to remember us from the previous day’s visit, but we were still pretty sure she didn’t know who we were. Since she seemed more responsive, we decided to show her some photos of Troubadour Mom and her siblings when they were children, using my laptop screen to enlarge them for easier viewing. She looked quite intently at the images while Troubadour Mom named each of the people pictured, which seemed to pierce through some of the fog in Nga Po’s memory. But then she pushed the laptop away. We figured she was tired or bored.

As soon as we put the laptop away, though, she reached for Troubadour Mom’s hand and began to massage it with her fingers -- just as we had been doing to her neck and back the day before. We could tell that she wanted to say something, but she couldn’t access the words, which was heartbreaking. I sort of lost it at that point and started to tear up, which set us all off. There we were, NG Sis and I with a hand stroking Nga Po’s arm or leg and the other scrabbling for tissues in our purses. What a mess.

Then, Nga Po very deliberately took my hand from her shoulder and placed it on top of NG Sis’s hand. Next, she took Troubadour Mom’s hand and placed it on top of mine. And then she went to work on my hand with her fingers, rubbing and kneading, all the while looking from one face to another very intently. It was as if she was trying to comfort us, telling us to comfort one another too and that it was going to be okay. I think we were so stunned that we forgot about crying and just gazed back at her, letting her understand that we were listening to what she couldn’t say.

We didn’t know what to hope for on the next day, our last with her, given the unpredictability of her mood, so we started off again just talking to her. Troubadour Mom fed her dinner, and then we took her back to the sitting area where we had shown her photos before.

She seemed less engaged with us, but we thought we’d try a different set of pictures on the laptop -- a collection NG Sis and Troubadour Mom had put together from a web search for images of the Hong Kong neighborhood where Troubadour Mom grew up. Somehow, they were even able to locate a picture of the apartment building she and her siblings had spent most of Troubadour Mom’s childhood in (the oldest was seventeen when she was born, so he wasn’t really a kid anymore).

Instead of telling Nga Po’s stories, Troubadour Mom gave a sort of running commentary on what the photos reminded her of: her secondary school, being picked up by Nga Po there, buying school supplies at the shop on the first floor of the apartment building, going for tea every afternoon. Nga Po began nodding with each photo, clearly remembering.

She was also nodding off between photos, worn out from the effort of looking, it seemed, even though she very obviously wanted to stay awake, so we put the laptop away again. When it seemed that we should take her back to her room so she could rest, though, she suddenly looked at me and remarked that I had gotten so tall -- the same words she’d used on my previous visit when she first spoke to me then. Again, we were completely stunned.

Then Nga Po began talking in earnest -- she seemed to know who we were -- and called my mother by her childhood nickname. It was as if a different person had been reawakened. Luckily, NG Sis had her camera, which takes great video, so we filled her memory card three times with footage of Nga Po and Troubadour Mom’s conversation (downloading the clips to my laptop each time it ran out of space). The content wouldn’t seem to have much significance to anyone outside the family, I imagine, but the person my grandmother was before she became more or less mute came back for a good hour, and that’s what we were all so thrilled to have in the recording. The connection to Nga Po, too, was more than we could have ever hoped to achieve in our brief visit.

We were not going to be able to see Nga Po the next day as we had to get ready to fly to Newfoundland for the next part of our trip -- had to run various errands and do a wrap-up day with Troubadour Mom’s family (we wouldn’t be seeing them again). So it was especially hard, after such a breakthrough, to tell Nga Po that we had to leave. It seems to be this way each time we visit: we get just enough time to reconnect with her and then we’re yanked away. I know that if we were there on a regular basis, she would be able to hang on to her words and her memories so much more, though of course, further mental deterioration would still occur with the progression of the disease. We can’t ask others to do what we did -- visit for hours and help her perform what are essentially exercises in memory -- as the other family members in Toronto have their own lives to take care of, with some people working multiple jobs. It just seems horrifically sad, though, that this is the reality of the situation: unavoidable absence.

There’s much more from this trip to write about, but I think this seems to be a good stopping place. Some additional recommended reading if you're interested: an article that appeared in The New York Times last week on end-of-life considerations. Quite relevant, I thought.

Stay this moment

... to use one's hands & eyes; to talk to people; to be a straw on the river, now & then -- passive, not striving to say this is this. If one does not lie back & sum up & say to the moment, this very moment, stay you are so fair, what will be one's gain, dying? No: stay, this moment. No one ever says that enough.

~ Virginia Woolf, December 1932

Tomorrow will be my last day in Seattle for a while.

D's been amazing -- he's already bought tickets for September and October, so we have several visits lined up. Which means no anxiety about when we'll next get to see each other (that is, if you don't count a certain well-justified sense of foreboding over airline punctuality).

I should be finishing up the first draft of my syllabus right now, but I know if I don't write this post today, I won't get to do it without fifteen other distractions once I get back to Iowa. So any thoughts on grading breakdowns and plagiarism policies will just have to wait. There's still time (even if the Type A in me says otherwise).

I went to Toronto early last week to spend some time with my mom and her mother. At one time, my grandmother was an enthusiastic storyteller, full of tales from her youth and her escape from the Japanese during World War II. Now that she is largely isolated from her family, she has no one to tell her stories to. In fact, the only time that they are ever told is when my mom recounts them for me.

Like my mother and her mother before her, I have the storytelling gene (even if I don't do the recounting as well as they do, the desire to do it is there). And while it is premature to say whether I'll actually be able to accomplish this, I want to try to cull all of the history from family memory and write it down. But first, I have to tell the story of this visit in order to explain why.

My grandmother is 92, and she is in a nursing home. Her doctors say she has Alzheimer's. It's hard to say whether this is completely accurate -- as far as I know, no one has actually done a scan of her brain to see what's going on in there -- but she is wheelchair-bound (more from advanced osteoporosis than anything else) and can no longer feed herself. She has trouble remembering the names of her children and difficulty recognizing some of their faces. But she's still there, deep in her mind, where her oldest memories live.

She rarely speaks now -- in fact, one of the nurses walking down the hall while we were visiting came into the room because she heard my grandmother talking to us and couldn't believe her ears. But given time, and more questions than "What's my name?" from every person who drops by, she can hold a good conversation, even with someone who barely speaks Cantonese (me).

On the day I arrived, my mom and I went to the nursing home right away to have lunch with my grandmother. I knew that she had physically deteriorated a lot from what my mom described after a visit nearly a year ago, but it was still a bit of a shock to see my grandmother in a room full of other vacant-eyed elderly men and women draped with large bibs, many of them being fed by the staff. There were also several residents who were fairly self-sufficient and very alert, but most of them had already finished eating and were making their way to the TV room down the hall. When we got to my grandmother's table, she was asleep with her head hanging over her tray.

One of my uncles was with us and had brought some homemade chicken soup, so we wheeled my grandmother to a quiet spot in the TV room to feed her ourselves. She was rather hazy -- the staff gives her some kind of sedative in the morning because she's supposedly developed aggressive tendencies toward them and other residents -- but we did manage to wake her up a little. She glanced at each of our faces repeatedly, staring for a few seconds then closing her eyes again from what seemed like exhaustion. For a while, she wouldn't eat. My mom kept offering her spoonfuls of rice and mashed vegetables, but my grandmother would turn her head or push the spoon away with one hand.

Then one of the aides walked by and said hello, chatting briefly with my mom in Shanghainese. My grandmother's eyes immediately flew open -- she had recognized the dialect she grew up speaking. "Did you see that?" I asked, nudging my mom. "Try asking her to eat in Shanghainese."

"Mine's terrible," my mom said, but she went at it gamely, offering a bite of chicken and laughing at the sounds coming out of her mouth. "God knows what I'm actually saying to her," she whispered.

It worked. My grandmother took the mouthful of chicken and let us feed her more. She still grimaced when we offered her vegetables, so we hid them in the rice. "I wouldn't like them either," I said to her in English (my Shanghainese is nonexistent). She stared at me again, trying to find me in her memory. "Hello, Nga Po," I said, calling her by the name I had used for her from age 1. I gave her my Chinese name too, but she closed her eyes again before it seemed to register.

That evening, we went back to feed her dinner. She was so much more alert that by the time we arrived, she had already finished (with the help of an aide), so we took her to a sitting area at the end of a hall. This time an aunt, in addition to my uncle, was with us.

"Who am I?" my uncle said. She stared and stared but shook her head. "Who am I?" he repeated. Then he began to talk about their life in Hong Kong, decades back, when my grandfather was an upholsterer doing all the furniture and drapes for the Peninsula Hotel. "Do you remember sewing all those curtains with Dad?" my uncle said. "We worked so hard with those needles that I got holes in my fingertips!"

A look of recognition began to filter into Nga Po's eyes. "You're Daniel," she said at last in Cantonese. They were the first words she spoke to us that day.

"Yes, yes," he said. Then Nga Po looked at my mother. "This is Mor Mor," my uncle said, giving the nickname her siblings called and still call her by -- littlest sister. Nga Po nodded, but we were unsure if she had really made the connection as to who my mother was.

My uncle talked on a little more until Nga Po suddenly pushed at his arm to indicate she wanted him to go away. Once he had stood up, she gestured to the wing chair he had vacated. "Let Mor Mor sit," she said very clearly. We all laughed. She remembered.

My mother took her turn until Nga Po asked for my aunt, also calling her by her nickname. Before we could try to explain who I was, though, we had to leave to meet more of my aunts and uncles for dinner. "We'll be back tomorrow," I said to her once we had wheeled her back to her room. She looked at me again, then her eyes glazed over a little and she retreated into fogginess.

*

The following morning, we found her not in the cafeteria but in her room. "She was hitting people again," an aide explained. "She wouldn't take her medication either, so we brought her back here."

Nga Po, lying flat in her bed, looked at us sweetly as we greeted her. Her gaze was alert as I leaned down and gave her my name again.

"My daughter," my mom said.

Nga Po's gaze locked on mine for a few seconds. "You've gotten so tall," she said.

I looked at my mother -- we silently seemed to agree that her recognizing me might have been a fluke, some kind of mistaken identity. But even if she wasn't remembering the right granddaughter, Nga Po allowed me to take her hand all the same, and she squeezed it and shook it gently. "She must be so hungry for physical contact," my mom whispered. We raised her bed so she could sit comfortably, and then we rubbed her shoulders and neck and stroked her hair, which she accepted quite peaceably.

"Are you sure this isn't bothering her?" I asked.

"She'll let you know what she wants," my mom said. "I'm sure she was hitting because the aides were trying to force her to do something she didn't want to."

"The medication," I said. "She knows what it does to her, and she knew we were coming back today."

We looked at Nga Po, but she gave no indication that she had heard us. I took my hand out of hers and reached to pull down her sweatshirt, which had ridden up behind her when we had raised the bed. Suddenly, she grabbed my hand firmly and pulled it toward her. She settled her own hand in her lap, her fingers still wrapped around mine. My mother was right. Nga Po knew what she wanted. I squeezed her hand, and she began to shake it again as if to say hello.

"Your hair is still so dark," my mom said after a moment, combing the thin black strands streaked with amazingly few white ones to the side of Nga Po's forehead. "Soon I'm going to have more white on my head than you!" She pointed to her own hair with its light sprinkling of silver.

"Whatever you say," Nga Po said. Her immediate response surprised us both.

"Well, of course!" my mom continued. "If your hair isn't changing anymore and mine still is, I'll catch up to you in no time."

And Nga Po laughed.

"My God, I haven't heard her do that in ages," my mom said, looking at me with wide eyes. "She's still in there."

That night we visited again with two of my aunts and uncles, a cousin, and her fiancé. Even though Nga Po's eyes were practically closing as we stood around her bed, she tried to force them to stay open, clearly recognizing many of her children, if not her grandchildren. We took turns again, sitting in front of her where she could see each of us more easily. "I can't remember," she repeated over and over as she tried to come up with our names.

"But you know our faces," one of my aunts reassured her. "That's all that matters."

Nga Po nodded a little uncertainly and smiled, the muscles in her face stiff from lack of use. And then she fell asleep.

*

On our last day, we took Nga Po to an outdoor pavilion on the nursing home grounds for lunch. After getting Nga Po's wheelchair settled, my mom went back to the car to get the fish sandwich from McDonald's -- one of Nga Po's favorite meals -- that we had brought, along with salads for ourselves. As we waited for her, I took Nga Po's hand and told her my name again. "You've gotten so tall," she said once more.

I nodded and took a breath. I knew this would be my last chance to talk with her for a while, and even if she couldn't connect my present-day identity to the granddaughter she could remember, I wanted to connect with her in the moment.

"I got married," I said.

"Really?" Her face brightened briefly, as if the broken filaments in the lights of her eyes were temporarily recoupled and glowing like flares. I wondered if she was remembering the day of her own wedding as a 16-year-old bride.

I pronounced D's name slowly for her. "That's my husband," I said.

Nga Po nodded and even repeated D's name. I knew she would not remember him after a few minutes, but knowing that she had understood me was enough.

After lunch, I took out my laptop and showed her a photo that had been taken on my wedding day. She turned to study my face and then looked at the image on the screen, as if to match them up. Then I pulled up a picture of her that had been taken at around the same age, one of several old photos that my mom had scanned for me. Nga Po stared at it intently then looked at my mom. "Is that me?" she asked.

"Yes," my mom replied.

"So pretty," I said. "I was never that pretty."

"With such an expression on my face!" Nga Po said, frowning critically at her younger self. "Hardly."

"Beautiful," I insisted and pointed at the lipstick carefully painted on her full lips.

Nga Po got quiet again. Then: "Is that me?"

My mom and I exchanged glances. "Let's keep moving," she said. I pulled up the next picture, one of Nga Po and me around age 7 wearing a red cable-knit cardigan. "Do you know who knit that sweater?" my mom asked.

Nga Po squinted and blinked. "I did," she said after a few seconds. "I did."

"I still have that sweater," I told her. "Someday, when I have children who can wear it, I'll tell them that you knit it for me."

For nearly half an hour, we looked at photos, some of whose events Nga Po was able to recall -- birthdays, engagements, trips. Even when she could not, though, she repeated over and over, "These are so good -- so good for remembering."

"We can take a picture now," my mom said, showing her the camera I had brought.

"And next time we come, I'll have it on the computer to show you," I said. Nga Po nodded. Very quickly, my mother composed the shot. But by the time she pressed the button, Nga Po was looking elsewhere in the room.

We had to leave in order to beat traffic to our hotel, and Nga Po was getting tired. No aides were available to get her out of the wheelchair into bed, so we took Nga Po back to the TV room where some of the staff were hosting a karaoke party for the residents. A few of the residents seemed to be following along as one aide sang along to a track in Cantonese, but the rest dozed or gazed at the TV screen expressionlessly.

"I don't want to tell her we're leaving," my mom whispered to me, her eyes beginning to well up with tears.

"I know," I said. "But we have to -- or else she might think we've abandoned her when we don't come back tomorrow."

My mom nodded. "She's understood every time before when I've told her we have to get on a plane. She knows it means goodbye." She bent forward and spoke quietly into her mother's ear beneath the warbling amplified through the sound system.

Nga Po nodded and raised her head to look up at us. And then, very clearly: "Thank you."

Both of us hustled toward the door of the TV room, tears streaming. When we turned to look one last time from the threshold, Nga Po was already staring straight ahead as if we had already vanished, figments of memory faded to black.