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When I'm not here, you may find me wandering the pages below. (If I'm a regular visitor to your site and I've left your link off or mislinked to you, please let me know! And likewise, if you've blogrolled me, please check that my link is updated: thisroamanticlife.blogspot.com. The extra (a) makes all the difference!)

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Body: in sickness and in health

I won't lie; this body and I have had our issues with each other for many years. Body image -- sure. Physical and mental overextension -- comes with being a Type A kind of girl. I still struggle with these things, so they show up from time to time in my writing.

More recently, illness, pure but not simple, has added itself to the mix in a multi-system sort of way. And the challenges in figuring out exactly what's gone wrong are many. As problems have revealed themselves in the last few years, beginning with reactive hypoglycemia in late 2008, I've documented them here, partly to gain a little clarity on managing complex conditions but mostly to give voice to vulnerabilities I feel but don't normally share with anyone face to face. Better out than in, they say, right? (Oh yes, humor is one way I deal.)

The links below cover the different angles I've examined (and from which I've been examined) within that experience.

Travel: neither here nor there

When the person you're married to lives two time zones away, you log a fair number of frequent flier miles. And if you blog about commuter relationships, you log quite a few posts en route too.

Since we're no longer in separate places, I blog less often from airports. But we do travel -- together now! -- which is much more fun to write about. So in addition to thoughts on our years of commuting, the links below cover the places we've been as a pair and, in some cases, the adventures that have happened on the way.

Writing: the long and short of it

Why do I do it? Good question. Maybe it's not so much that I like to write but that I have to write, even when the words refuse to stick to the page. Believe me, I've tried doing other things like majoring in biochemistry (freshman fall, many semesters ago). Within a year, I'd switched to English with a concentration in creative writing and wasn't looking back.

After graduating, I taught English for a few years and then worked as an editor, which I still do freelance. In 2007, I applied and got into an MFA program at a place I like to call Little U. on the Prairie. I finished my degree in 2011 and have been balancing tutoring and writing on my own ever since.

The following links cover the writing I've done about writing: process, content, obstacles, you name it. It's not always pretty. But some part of me loves it, even when it's hard. And this is the result.

Heart: family and friends

I'd have a hard time explaining who I am without being able to talk about the family I grew up in as well as the people I've met beyond its bounds. But even with such context, it's not easy! In the simplest terms, I'm a first-generation Asian-American who has spent most of this life caught between cultures. That, of course, doesn't even begin to describe what I mean to, but there's my first stab at the heart of it all.

That's what this group of posts is reserved for -- heart. The essential parts of my life whose influences I carry with me, for better or worse. The links below cover what I've written as I've learned how these forces work within me, for me, against me, in spite of me. They anchor me even as they change me, and they keep life interesting.

Recommended reading

What do I do when there's too much on my mind and my words won't stick to the page? I escape into someone else's thoughts. Below is a collection of books and articles that have been sources of information, inspiration, and occasional insight for my own work.

Wednesday, July 15, 2009

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.

5 comments:

hypoglycemiagirl said...

I'm glad you got some kind of respons out of your grandma, it's so hard to cope when people you love fades away like that.

Contemporary Troubadour said...

Indeed, HGG. I think we're just glad that we could bring her some sort of happiness or pleasure by reconnecting with her.

French Fancy said...

How sad this is - it reminds me of my father's mother as she faded away in her care home and didn't recognise us any more. One of the few times I remember my father crying.

No happy endings unfortunately -but at least the elderly in their own little worlds have their bodily needs met. It is just so hard for the family looking on, but what are the alternatives?

Good Enough Woman said...

I'm blown away by your family's kindness and thoughtfulness to your grandmother. I love that you brought her custard. I'm also blown away that she become so lucid. That's so great that she had that time, but then it's so weird to wonder where all that understanding "hides" the rest of the time.

(P.S. I wasn't sure what NG [as in NG Sis] referred to. Was I supposed to? Did I miss something?) Don't mean to be nosy. Just trying to keep track. :)

Contemporary Troubadour said...

FF -- It's true. The alternatives for her would have been hiring round-the-clock in-home care, which is prohibitively expensive. The place where she was living would also have needed renovations to make it wheelchair accessible. We wish she could have had these alternatives, but since my mother lives far away, the decision wasn't really up to anyone in our immediate family. Nga Po has a son and two daughters who do live in the same city, so they had the most weight in determining how to handle things.

GEW -- It really was amazing, and it completely convinced us that if she had regular visitors willing to do this sort of "exercise" with her, her deterioration might slow somewhat. She only sees us once a year at best, and the fact that she could understand who we were after only three days really makes me wonder how much more she might be able to hang on to in her memory if other people could interact with her as we did.

Oh, and NG Sis is Newly Graduated Sis :).

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Wednesday, July 15, 2009

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.

5 comments:

hypoglycemiagirl said...

I'm glad you got some kind of respons out of your grandma, it's so hard to cope when people you love fades away like that.

Contemporary Troubadour said...

Indeed, HGG. I think we're just glad that we could bring her some sort of happiness or pleasure by reconnecting with her.

French Fancy said...

How sad this is - it reminds me of my father's mother as she faded away in her care home and didn't recognise us any more. One of the few times I remember my father crying.

No happy endings unfortunately -but at least the elderly in their own little worlds have their bodily needs met. It is just so hard for the family looking on, but what are the alternatives?

Good Enough Woman said...

I'm blown away by your family's kindness and thoughtfulness to your grandmother. I love that you brought her custard. I'm also blown away that she become so lucid. That's so great that she had that time, but then it's so weird to wonder where all that understanding "hides" the rest of the time.

(P.S. I wasn't sure what NG [as in NG Sis] referred to. Was I supposed to? Did I miss something?) Don't mean to be nosy. Just trying to keep track. :)

Contemporary Troubadour said...

FF -- It's true. The alternatives for her would have been hiring round-the-clock in-home care, which is prohibitively expensive. The place where she was living would also have needed renovations to make it wheelchair accessible. We wish she could have had these alternatives, but since my mother lives far away, the decision wasn't really up to anyone in our immediate family. Nga Po has a son and two daughters who do live in the same city, so they had the most weight in determining how to handle things.

GEW -- It really was amazing, and it completely convinced us that if she had regular visitors willing to do this sort of "exercise" with her, her deterioration might slow somewhat. She only sees us once a year at best, and the fact that she could understand who we were after only three days really makes me wonder how much more she might be able to hang on to in her memory if other people could interact with her as we did.

Oh, and NG Sis is Newly Graduated Sis :).