Interview by Robert O'Malley

Elena was a longtime resident of Chinatown.

Iwas born in Peru and adopted by Chinese parents. The three of us immigrated from Peru at the end of 1969 and lived on Tremont Street in the South End. My parents had earlier immigrated to Peru from China. My father went there when he was a young man and later returned home to marry my mother. Twenty years passed before she joined him in Peru.

From Tremont Street we moved to an apartment above the Eldo Cake House in Chinatown, and later my parents bought this place on Harvard Street.

Like a lot of Chinese men, my father worked as a cook; he eventually became a partner in a restaurant in South Attleboro which is still operating. My mother worked mostly as a lacer of wine skins. The skins were in the shape of a bladder; at the time it was kind of a hippie thing; they had a leather covering and lace up the sides. She used to tie the laces on the side for the strap. They made those at the House of Taurus in the leather district.

I went to the Quincy School at 90 Tyler St. until busing began. I had a few very good friends, and we all went to school on the same bus and came home on the same bus. During that time I knew mostly Chinese kids from the neighborhood. It wasn't until college that I made other friends.

Chinatown at that time was very much a neighborhood unto itself; people lived here and socialized here and bought their groceries and did their things here. But nowadays, you have this huge community. Chinese and Asians now use Chinatown as an open air mall; they shop and eat in the restaurants and walk around and enjoy seeing other Asians. But they don't live here. So I think that's really strained the neighborhood in many ways because of the parking and the congestion.

In the mid-'80s I went to Tufts and lived at the school. That was a big change. A rude awakening. For the first time it was clear I wasn't as comfortable being from an immigrant working-class background. I think I came home at least once a week. It was very difficult actually. As a child it was less obvious to me where I was in relation to the rest of society.

It's never easy to encounter the class wall but I think that after you get through the initial shock, you feel comfortable in your roots; you can judge - irrespective of the class to which you belong - who are the good people and who are the bad people, what is moral and what isn't. Chinatown became a familiar and comforting place for me.

After the Tufts experience I think I felt a greater need to make a bridge between those two worlds. But that was very difficult. One feels very alone making a bridge between worlds. You come home and try to tell people who have never been in that kind of setting what it's about, then you go back to your student life on campus.

In the end I think I always needed to make that bridge back to my parents. But I felt that they couldn't (I think couldn't more than wouldn't) extend themselves to meet me in my new world. So I had to go back and build that bridge myself.

I think they felt uncomfortable leaving their world. Once, for instance, I bought them tickets to go to the Celtics game because they loved to watch the Celtics on TV. I thought it was a great gift, but they didn't want to go. They said it was nighttime and they weren't interested in going out at night. They thought it was a big hassle and said the seats weren't great. They could have a better picture on TV. So they couldn't or wouldn't. And I tried to bring them to American restaurants to eat. One time I brought them to Newbury Street. My mother just took one look and said, "I'm not eating here."( I think it was really the Alzheimer's.) She just took us all out: myself, my cousin and my father. There was no reason given; she just reacted against the place and we had to turn and come back to Chinatown to eat. So these are just a few examples of the ways I tried to let them have experiences outside of Chinatown. I did bring some white friends home. They were female, so that was okay.

After college I worked for a year and lived outside of Chinatown. I lived on Beacon Hill. I knew that was very difficult for them. They didn't understand why. I brought my mother over there one time, but I was surprised she even came with me. She was so hurt and so angry. I think that was the first time I'd seen her not being able to express herself. When I was a child she would rant and rave; she was a no-holds-barred kind of person who would just go off. But this time I could see she was so upset by this whole thing that she couldn't even articulate, couldn't even yell at me. She'd lost control at that point because I could pay for myself. According to them, there was space at home, so why would a single, unmarried daughter choose to live not far away when there was space at home. I don't think they understood there may have been conflicts between us all that time

I lived there for about a year before I entered a two-year master's program in urban studies and planning. I moved to Cambridge and also started dating Eric whom I eventually married. It was while I was in graduate school that it suddenly hit me: I decided I was going to move home to take care of them. They were getting old - my father was in his late 70s and she was about 70. I would merge my world with theirs. I had a vision of this atomic fusion in my head. Whatever happened, I was going to be fine with the move and we were going to live through this however it was going to be done. Eric said, "Why are you moving home? You're crazy." But when he met them I think he finally understood that they were quite old. With that kind of goal in mind I moved home after finishing graduate school in 1990. But I wasn't prepared at the time. We didn't know she had Alzheimer's. I wasn't prepared for what was going to happen over the next nine years.

My father became sick in 1993; he had a heart attack in the middle of the night. I was living at home at the time and was in the apartment when it happened. My father had been a smoker for a long time, but he had stopped smoking about two years before he had the heart attack. He said. "Why did I stop smoking? It gave me the heart attack." This is the kind of humor you need.

He spent six weeks at New England Medical Center and was eventually taken off the ventilator. I was camped out there because of the bridge I was still trying to build. I would go there with my mother. She would say things like, "Oh he's dead, he's dying." And then somebody would say, "He's not, he's not, he'll be fine." And she would say, "How can 'ham gnu' come alive? How can salted fish come alive?" I love that.

After a while some of the nurses and staff started to tell me it wasn't healthy for me to be there so much. "Why don't you go away and come back; we'll keep an eye on things." But I refused and just didn't think it was right for them to tell me that. And of course it didn't matter that three or four of them talked to me at the same time. I just refused.

And so we managed to get through that crisis and my father came home. But my mother had Alzheimer's at that point and had stopped sleeping at night. That was hell because I still had to go to work in the morning. After three months, I got nighttime help, but that was the worst three months of my life.

My mother fell one of those nights. I was up washing clothes and she fell into the bathtub behind me because I wasn't watching, because I was so exasperated without sleep at that point. She hit herself on the faucet and got a big gash and it was horrible. Blood was all over the place. My Dad was weak and I had to call out to him for help. He got some kind of Chinese powder - Chinese medicine - and he put it on her and it stopped the bleeding. She had this big gash but by the time the EMT's came she had stopped bleeding. They brought her to the hospital for a concussion. I said, "Oh, he put this stuff on her. I'm sorry, he just did it. I don't know what he put on; I'm sorry you have to clean it up right now." And they said, "Oh no, it stopped the bleeding. That's great!"

When we brought her to the hospital with a gash in her head, she was screaming bloody murder because she didn't know what was going on and they were stitching her up and I just couldn't bear it. I mean I tried to be there but I couldn't bear it; I had to go outside but I still could hear her as they tried to stitch her up; it was horrible, horrible.

Alzheimer's is an organic disease of the brain. At first it seemed like my mother had a mood change, but then her memory wouldn't be there. And then there was some wandering - not a lot. There was clearly disorganization: she would put unlike things together without any order; she'd keep bags in the basement and things that didn't make any sense even for a normal pack rat. And she was very irritable. I thought it was because she was becoming old and bitter, but it wasn't. Eventually the disease will affect your sight so you can't see very well. Depth perception becomes a problem. If you see a dark patch on the floor you'll think it's just space and won't walk on it. That happened a couple of times in the mall when we practically had to drag her from here to there. Alzheimer's is degenerative and fatal. Eventually it affects not only your fine motor skills but your gross ones as well; eventually she will stop walking. At this point she's 81 and very slow and can't move herself anymore.

My mother doesn't see much anymore but she can still hear my voice; she still recognizes that. I think she's familiar with her environment and familiar with the routine and the people who take care of her, who are pretty stable. The people who come in to help her are the best people, and we are fortunate in this community to have people, mostly older Chinese women who are willing to do this job. It's not the worse job because the wages aren't too bad and it does come with some benefits versus other jobs in the community. You can count on them; many give a lot beyond the job.

We eventually started patching together 24-hour care for her, and we've maintained that up to this point. I'm part of that care. I've been able to do this because of my persistence and advocacy to keep her at home. It's a fight for people who try to keep their family in the home because it's difficult to get either Medicare or Medicaid to pay for some of these services. They don't want to pay for chronic need; they'll pay for acute care only. So this is the battle. You have to patch together whatever you can: self pay, Medicare, Medicaid, whatever else. And you have to do the legal work and gain guardianship. It's been an amazing journey these last nine years!

And besides the legal and the financial things, there's also the medical profession. Many medical people have this point of view: if you have a bad apple in the bushel you have to take that away because it's going to affect the other people, the other apples - in our case me and maybe my father. So I think it's sort of American or Western thinking.

But the way I look at it is, we as a family unit should enjoy life together and suffer together; whatever happens we should endure it together. And that's the way I've seen it play out. I think the medical profession tends to say, "It's okay to look at nursing homes, you know." And I say, "You know, you're right; maybe I'm just too scared to look at nursing homes; maybe I should do that. Because if there's a challenge for me I'll take it. So I go out and look at nursing homes. If they're telling me I don't have the courage to put my mother in a nursing home I'm going to take that on and go to check out the nursing homes. So I checked out a bunch of them. And I think I could do it but I don't want to do it. I think it's very important to do what you think is the right thing and in my case I think that means the best quality of life every day. I think for her this is the best quality of life.

It's very difficult to do what I'm doing and I guess it's not right for everybody. But I think people should have the option of keeping family members in the home if that's what the person wants. My understanding is that most elders want to stay in the home, so I think the option should be there.

Maybe in some ways I'm more Chinese than I think I am. I always think of myself as being so Americanized. I think I'm scared to think of myself as Chinese because I'm afraid that I don't know exactly what that means. But I do know what it means to be American, and I think that's more comfortable for me. I think that's an interesting part of me that I have to explore sometime soon. But I think people in the community need to know there are options and that they don't have to put somebody in a nursing home if they don't want to and can at least prolong their stay in the community.

I think I try this hard because of this bridge I've been trying to build. I think I've succeeded - at least in my own eyes. Eric met my father before he died and actually spent quite a bit of time at my house. So that piece of it was resolved more or less, and things were good. My father accepted Eric and we'd go out. He would have him over and cook him whatever he wanted. We had some really good times. I also brought my dad to my workplace and had him meet people there and that was also very good. This was about a year before he died, so I think that was a success. In my mom's case I really think that without this disease I wouldn't have had the opportunity to be able to express the love I have for her. And I think that's also a success. I've never really in my head wanted to [just walk away] - I mean rationally make that decision - but many times I've felt overwhelmed and highly frustrated and in that sense wanted to be away from it all. But I never really thought that was what I wanted to do.

Many people in the community don't know about Alzheimer's disease: they think it's craziness or they think it happens because somebody has done something horrible in their past life; they think it's caused by evil spirits. I personally have encountered the different ways people think even about me. They think, "Well, you must have caused your mother a lot of conflict and upset; she was worried about you for not getting married and that's why she has this illness." But that's a horrible burden to put on me. People need to be educated that this is an organic disease. When you examine the brain of people with Alzheimer's you can see very clearly the tangles; it's like seeing somebody with bad lungs, with emphysema. People don't understand this because people in the Chinatown community are not well educated in their own country. There's a lack of education in general about biology and physiology.

Taking care of my mother has been a challenge, a mental challenge; it's sort of like an athlete running a marathon, or an athlete training for a particular martial arts form; it's that kind of physical and mental endurance that you need to achieve and strive for in order to get through the Alzheimer's. It's a discipline. I'm not a religious person but it certainly has a spiritual component, because you have to understand what the values are. It becomes a way of living and showing what your values are, a way of doing what you believe in. Those values are about caring for people related to you or not related to you who are the most vulnerable and giving them the best quality of life. And I think in most cases that means staying at home and getting one-on-one care if possible. I'm hoping to be able to keep her at home till the end. So it's those kinds of values and that kind of discipline and focus you need to get through it. Because it's just overwhelming. The bar keeps getting higher and you just have to energize yourself to do it. Otherwise you couldn't, you really couldn't. You have to trick yourself mentally to do it.