Stories of Caregiving From the AAPI Community
By Gil Asakawa, November 01, 2016 10:34 AM
AARP is proud to partner with Next Day Better to share a monthlong series of stories of caregiving within the Asian American and Pacific Islander (AAPI) communities.
Throughout November, we’ll be adding short stories to this post, so please return to see the latest one at the top of the page. You can also find the latest stories on the AARP AAPI Community page on Facebook. We invite you to share your stories of caregiving by adding them to the comments below, or as comments on the individual stories on Facebook, using the hashtag #AAPIshareyourcare.
NextDayBetter x @AARP is a visual storytelling campaign inspired by AAPI caregiving.
"After learning that my dad had stage four prostate cancer, I invited my parents to live close to my home in Boulder. During the last 10 days of my dad’s life, my mom's heart would skip four to five seconds before it would start beating again, making her lightheaded and weak. I rushed her to the ER, and was told by the heart surgeon that she needed a pacemaker. I was concerned about my mom undergoing surgery at age 87, but we had no choice. She could go at anytime if she did not have this procedure done as soon as possible. Then, to make matters worse, one of her lungs collapsed while fluid built up in her other lung.
"I was totally overwhelmed and tired at this point and was working a 40-hour job, but I chose to stay strong. The next few days were spent shuttling dad back and forth to the hospital to see mom. Finally, she was out of the woods, and I took her home on a Monday evening. To welcome her back, the three of us had a home-cooked dinner. Little did I know that this would be our last dinner with my dad.
"I really wish I took a photo of our last time together. After his bout with cancer, his suffering has ended. He passed away on Wednesday night, while my husband, my son, Mom and a couple good friends, and I were with him.
"I had no regrets after he died because I took him to the best doctors, the best everything. I had the option to send my parents to a nursing home, but I decided to take care of them myself. I gave dad everything that I could afford. He died with dignity and family around him. In his final moments, I reassured him that I will take care of mom.
"After all, if I was to die, I would want someone say to me 'everything will be ok.' I made sure that he felt this way in his final moments."
This story is part of the Filipino diaspora, as told to @NextDayBetter storyteller Ade Macalinao.
Director of Equality Fund at Asian Americans for Equality
New York City, NY
"My mother is now 70 and lives alone in Fresno, California as I build my life and career here in New York City. She moved to the States to marry my father, but her whole family is in Taiwan. Her English is limited and she already feels alienated from her non-Chinese speaking neighborhood. While she has a caregiver to help her with errands and to keep her company, I don’t think she can live alone very much longer. I don’t want her to be depressed. I want to bring her to New York City to make her feel comfortable but I can barely afford to live in New York myself. I can apply for affordable housing on her behalf but it’s so competitive.
"The big thing that comes up for us at Equality Fund is housing and how people want to live in a place with dignity. There was this report published saying that 25% of Asian Americans in NY are on track to be living in their elder age, their golden years, in poverty. Many do not believe that it’s our responsibility to take care of our elders. I find the way that American culture is very much focused on working age people and those who are able to perform with their bodies makes it hard for us to focus on the needs across generations.
"We need to be able to figure out how people living in their retirement are valued for their experience. We really need to figure out how we can provide basic needs such as food, housing and transportation to our elders like my mother.
"My mom and I have been living far apart for too long. Sometimes, in a humorous or angry way (depending on the day), she would say 'you’ve forgotten about me. I fed you all my life and you don’t even know what I had for dinner.' I feel really guilty. As a young professional, I want to be in a better position financially and emotionally to get her here and support her. I simply want to have Sunday dinners in-person with her. One day, I’ll get there."
This story is part of the Taiwanese diaspora, as told to @NextDayBetter storyteller Mari Niki Pasion.
Advisory Board Member, Multicultural Communities for Mobility
"Regardless of the mode that someone travels, mobility is an important issue that everyone should be concerned with. Whether you're a cyclist, or someone who walks everywhere, or uses a wheelchair or other mobility devices, so many people feel that they're being ignored or that they're not being seen.
"One particular experience that stands out to me is really spending a lot of time with my father, who's getting older every day. To me, his needs have started to become more of my priority. He has several health conditions and needs to be walking more as part of his health regimen. I think someone like my dad who is over sixty, who really wants to be connected to his community, isn't always inclined to walk or go out more because many of the streets he would be walking on aren’t that inviting or even unsafe.
"I think that informs how I do this advocacy work since people who are aging or use mobility devices aren’t always thought of when these spaces are being created.
"I’m really passionate about the work I do with Multicultural Communities for Mobility because there are so many opportunities to create safer, healthier public spaces for people of all ages, especially my father. As a woman of color, an immigrant, and a daughter with aging parents, to me it’s really important to make sure we have spaces where we feel safe, where we are welcome, and can exercise our freedom to live and interact with other community members."
This story is part of the Chinese diaspora, as told to @NextDayBetter storyteller Ade Macalinao.
"I’m bicultural – American and Chinese. My parents recently asked me, 'Are we going to have to move back to China? Are you going to take care of us?' They think about that often. If they had children that grew up in China, that wouldn’t even be a question. But they know that that their children are Asian Americans. While many Chinese elders live with their families, many Americans send their aging loved ones to retirement homes. We, as a family, are not sure what the rules are.
"When I was 13, my siblings and I helped to translate for my immigrant parents, deciphering bills and letters as much as we could with our middle-school level Cantonese. When I grew older, my siblings and I began working in our family’s Chinese restaurant. We helped our parents by prepping vegetables, running the front register, and even handling the bookkeeping.
"At the age of 19, I started scheduling and attending medical appointments for my parents. I translated medical forms and communicated their doctor’s wishes. In the process of translating, sometimes I learned personal details that otherwise would not have normally come up in everyday conversations, particularly during my teenage years. Sometimes, what I learned was not the most appropriate thing to learn for a teenager. This was the reality of taking care of my parents throughout my entire life.
"I’m 28 years old now. The expectation of giving care has been ingrained in me from a young age. Yet, as I get older, my siblings and I are beginning to have the tougher conversations. As they age and eventually retire, how will we take care of them emotionally and physically? How will we be able to afford aging care for them?
This story is part of the Chinese diaspora, as told to @NextDayBetter storyteller Ryan Letada.
Author of "Confucius Says"
"I promised my parents that they could live with me until they die. Not keeping this promise was a matter of great guilt for me. After eight years of giving care to my aging parents, I simply couldn’t do it anymore. Either my husband would leave me and my health deteriorate, or I had to move them out. My therapist made me realize that my marriage and health should come first.
"We moved them into a beautiful assisted living facility, and eventually into a nursing home after my mother’s dementia worsened. It was difficult for me not to keep my promise. However, I saw that my parents were getting better care at these facilities than at my home. They had a nurse, they had social activities, and they received effective medication treatment and monitoring. This brought me comfort. We visited them often.
"When my mother passed away under hospice care, we were by her bedside. We sang to her, drank wine, and celebrated her life. She died peacefully with a loving family around her. She let out one breath and she was gone.
"When we thought that my father was dying, my sister instructed me to lead his soul out of his body the Buddhist way by putting my hand over his head. My father was Catholic and so I was saying the 'Our Father' prayer. His roommate was Muslim. His television was blasting away a Muslim prayer at a mosque. I laughed and said to myself, 'Who knows who has the real god? It could be Islam. It could be Christianity. It could be Buddhism.' I prayed the Our Father, put my hand over his head to guide his soul, while Muslim prayers chanted in the background. At that moment, I thought to myself that my dad was fully covered. And that’s how he left.
"After seeing them die, I have no fear of death. It’s so easy. When the body gets to that point, your body is ready to let go. It really is letting go. Despite my guilt, I knew I did my best for them. They died peacefully, after all, in a warm bed surrounded by loved ones.
This story is part of the Chinese diaspora, as told to @NextDayBetter storyteller Ryan Letada.
San Francisco, CA
"When I was in college, I did the immigration paperwork to get my mom to the States from Korea. For both of us, adjusting to the move came with a lot of challenges. We came across logistical issues like where she would live and interpersonal issues like what caregiving meant for each of us and making sure those ideas closely aligned.
"When it comes to caregiving, I think we all feel like there’s no end to it. There’s no limit to how much care you can give somebody. It feels so abundant or bountiful and you always feel like you’re not doing enough. I’m constantly feeling like there’s something more than I can do. And I think there’s always a sense of guilt associated with that.
"But what I’ve found, is that there always needs to be a conversation asking, is my expectation around giving the same as the person on the receiving end? And by just making sure that our expectations are really clear helps us have healthy conversations that prevent a lot of pain from happening on both ends.
"For instance, the last thing I want is to feel like supporting my mom is holding me back from pursuing my dreams. That’s the conscious conversation that we always have: how do I continue to provide for her while pursuing things that I want to do? My mom always tells me that she doesn’t want to be the one holding me back. And whatever needs to happen for me to pursue my dreams and passions is something we need to be figuring out together. We’ll make it work.
"To get to this point, there were a lot of hurdles. We weren’t always this communicative and I think we learned to address these really tough feelings over time.
"Now, I’m happy to know that we’re making progress. I think we’re at a point where I’m feeling really inspired by the new life my mom is creating for herself. Now that she’s been here for a while, she’s pursuing an education and building her own social circles. She’s also really excited to figure out what building my own life will look like for me."
This story is part of the Korean diaspora, as told to @NextDayBetter storyteller Regine Malibiran.
Frances Kakugawa, 80
Author, Japanese Diaspora
(Photo by Jason Kimura)
"Before I became a caregiver, I had four books of poems published. And I thought that was it. But caregiving just opened up a whole new source for me. So I began writing. And as I began to write, I thought, oh my gosh, to be able to create a poem, to be able to create an art form from something as devastating as Alzheimer’s, it gave me such a lift.
"Let me give you an example of how this works. I walk into my mother’s bathroom, it’s 3 o’clock in the morning, and this is the first time I see her bowel movements (BM) on the floor. It’s the first time I’m totally shocked. And in this moment of panic, I pick up the smallest brush I can find in the household, my own toothbrush. So there I am, on my hands and knees, I’m scrubbing BM off the floor. And all of a sudden, I’m doing this and I say, maybe there’s a poem here. And the minute I said this, my whole experience turns poetic. Cleaning the BM became secondary. I’m looking for the images, I’m looking for the right language. And as a result I wrote a poem.
"I was no longer a suffering caregiver, cleaning BM. I was a poet/caregiver and that made all the difference in the world. I went to the Alzheimer’s Association and said, I want to start a poetry writing support group for caregivers. That was in 1998.
"As I work with others, I find how poetry helps us to look at the reality of what’s in front of us. But we can recreate reality and bring a different meaning to it. When my mother was first diagnosed with Alzheimer’s, she got one of those black and white composition tablets. And she began to sign her name, Matsue Kakugawa. She would sit for hours, and she would say, ‘It would be so shame if I went to the bank and I can’t sign my name on my Social Security check.’ She would just keep signing Matsue Kakugawa. She filled up five of these notebooks with all Matsue Kakugawa. And my brother saw that, and he would joke, ‘Oh there she goes, writing her big novel.’ And when you look at it, just objectively, it’s just a strange behavior. But when I wrote a poem about it, this is what I wrote:"
Soon after she was diagnosed, she began to fill a composition notebook with her signature
So shame she said, if I can’t sign my name nicely at the bank.
It became her favorite pastime…. Matsue Kakugawa
carefully written, page after page after page.
As her disease progressed, Matsue Kakugawa would lose a letter or two, and soon she was reduced to scribbles and lines.
Five notebooks, 100 sheets,
22 lines per page
22,000 Matsue Kakugawa.
22,000 attempts to save herself from the thief who was stealing her name.
"It puts a whole different perspective on what she is doing. How can I not honor her by her intention, her daily work in trying to retain her own dignity, and in this instance to retain her name? It helped me become more compassionate towards her by going beneath the behavior that I was seeing. I would try to put a story to it that would benefit either my mother or myself.
"I think poetry really helps because it puts you in a pause position. You pause and you look. And there’s always this decision to be made: how do I view this? Do I view this as a burden, or do I view this as a gift?"
This story is part of the Japanese diaspora, as told to @NextDayBetter storyteller Sarahlynn Pablo.
Bay Area, CA
"It was surreal when my family told me that my dad had a stroke due to high blood pressure. I was living and working in New York City at the time and they were in the Bay Area. He was rushed to the hospital and we found out that we needed to operate and remove a tumor in the base of his skull. On my flight home, my mom told me over the phone, 'It didn’t look good after the scan. It’s grave.' It flashed in my head that this could be it. You had your time with your dad. Some voice in my head told me, 'Be ready to say goodbye.'
"Thankfully, this was not the case. When I arrived, it was an eye-opening experience to see him hooked up to tubes after his surgery. His face was puffed up. There was a lot of blood. He was in a coma for a week. And when he finally woke up, his speech was impaired. For a while he could not eat solid food. He was bedridden and the right side of his body was weakened.
"There was no question about it – I needed to move back to San Francisco. I knew I couldn’t be on the sidelines, supporting from miles and miles away. I needed to be active and help my family with my father’s recovery. I knew that they could not manage it on their own.
"Once I moved back, my mother, brother and I partnered up to take care of my dad. At one point, he had to take 15 different pills. We kept his medication intake organized, prepared his meals and organized the bills. I had to assist my dad, who was immobile, to go to the bathroom. There were times when he did not want me go in with him. You can just imagine what that does psychologically to both people. You have a role reversal when the child becomes the parent. He was embarrassed, but I would tell him that because he couldn’t stand on his own, I needed to be by his side.
"While I had unfinished business in New York City, I did not feel that moving back to the Bay Area was a sacrifice. It was paying it forward. My father brought me into this world. Right after the stroke, I remember vividly how my mother asked my father to squeeze her hands if he could hear her on his hospital bed. He then sang a Filipino song and kept squeezing her hands to the rhythm of the music. At that moment, I knew we had a fighting chance. I knew that he would give it his all. I knew that I would have to do the same."
This story is part of the Tibetan diaspora, as told to @NextDayBetter storyteller Ryan Letada.
Co-Founder of the Himalayan Elders Project
Queens, New York
"Four years ago, my co-founder’s mother immigrated to New York from Nepal. He told me that every day after she prayed, she would sit near a window facing a highway. When he came back from work, he would see that she was still just looking outside the window. This was a very sad and depressing scene for him because in Nepal or in India, Tibetan seniors are very active. They have their own community, monastery, and they can go out and chit chat. They have so many activities going on and they know the language. It’s a very vibrant, active community in India and Nepal.
"Here in New York, they have nothing. They don’t know the language. Most of them are illiterate to begin with, so they don’t know how to operate the TV or how to read the street signs. They’re afraid to go outside. So they stay at home all day and this continues for days, weeks, months, years.
"My co-founder and I found out that many Himalayan communities had similar experiences. Many of the seniors wanted to go back. Their kids are here and they want them to be happy, but the seniors wanted to go back because there was nothing to do here. Then we thought, maybe we could take the seniors to a picnic.
"We took them to upstate New York for three days. Many of them told us it was the best time since coming to America. They enjoyed, they talked, they danced. We had a lot of fun. The seniors requested having a place where they could just hang around and be together so that they could talk and pray. That was back in 2012. We took nine seniors to that picnic. Now we take care of 134 seniors.
"I never thought they would be so open and joyful when they are with other seniors. Tibetans, Himalayan seniors, they tend to be serious and be the ones who advise you. They’re not very joyful.
"But when they’re by themselves, they’re like kids. It gives us a lot of joy to see that and a lot of encouragement to do more fun stuff. We took them to a zoo. All of them lined up for the carousel. It’s very unique and unusual for them to do that. They are very joyful and like kids at heart when they are together."
This story is part of the Tibetan diaspora, as told to @NextDayBetter storyteller Regine Malibiran.
Clara Chiu, 52
Los Angeles, California
"In my thirties, my parents started to deteriorate. I anointed myself as their chief caregiver and really bought into the role of the Chinese daughter. I don’t think I ever left my parents – maybe one time to take a shower. If my mom stayed in the hospital, I slept on the floor.
"My family didn’t talk about death. There was this big fear of death and illness. If someone died, my mom would say, ‘Uncle is kaput.’ She couldn’t bring herself to say it in English or Chinese. She had to use German to say someone had passed on.
"One morning, my dad called me downstairs and said, ‘Clara, I’m not feeling good. Can you get me a glass of orange juice?’ All of a sudden, he let out a snore and passed out. I couldn’t revive him. My dad ended up dying in my arms. After my dad’s death, my mom was diagnosed with cancer. I was with her when she passed away, too. Both of my parents died at age 65, within six months of each other.
"I remember sitting with my mom one time and she said to me, ‘I’d like to get up, but I can’t. Can I?’ I said, ‘No mom, you can’t get up. But if you want to, let me know where you want to go.’ She looked at me and said, ‘It’s ok,’ and closed her eyes. I remember thinking in that moment – that even though we had a nurse, caregiver, and relatives coming in and out – my mom still had to count on herself. We have to count on ourselves for the big journeys – like coming into this world and leaving it.
"Many days, I sit up in bed and say to myself, ‘If I can stand up, everything’s going to be OK’ – remembering that moment when my mom wasn’t able to get up on her own. She taught me how to be there for myself."
This story is part of the Chinese diaspora, as told to @NextDayBetter storyteller Nina Q Ho (@NinaQHo).
New York, New York
“Through the Dinner Guys Giving Circle, I personally pushed for funding something for the elderly part of our community, because I noticed that there’s a real lack of service and care for LGBT AAPI elders. I don’t see any, I don’t have any role models. They’re just not visible.
“That’s how we came to partner with SAGE [Services in Advocacy for Gay/Lesbian Elders], an organization which has done a lot of incredible work on behalf of the AAPI community. I first learned about it from an elderly gentleman in his 60s when I first graduated college. A friend of mine said, ‘Hey, if you're going to New York City, look up my friend Leon. He's been in New York a long time and he can help you out if needed.’ When I first met Leon, I was 21 years old. A 60-year-old man seemed so old to me at the time. Looking back, that was so silly of me.
“But Leon was really, truly, one of those people who was so full of life and so generous with his spirit and energy. He habitually reached out to set up dinner dates and we always ate at innovative restaurants. We had the best conversations, where he shared his wisdom and his wicked sense of humor with me. This commitment to enjoying life and sharing his passions with people around him inspired me to do the same as I aged.
“However, one of the things that I was always very keenly aware of was that he was alone. He didn’t have a partner. And he didn’t have children. But he had a wonderful extended family with nieces and nephews. When his health started to fail, I saw first-hand what a difficult challenge that was for him, as well as for his family. Even though he always had people who could take care of him, it certainly made me start to think, ‘What if you didn’t have that?’ He was of that generation where being gay often meant being alone.
“AAPI elderly have the lowest rate of people who are coming out, because I think culturally it’s just really hard for them even though times have changed. And so the question was, how do we reach out to people in a way that has never really been done before?
“When the Dinner Guys first partnered with SAGE, we started helping them think about different ideas for growing their community. One idea was, instead of inviting people to come to a ‘Coming Out’ group for seniors, to give computer lessons where people can have intergenerational interactions, helping each other and learning from one another without feeling like they have to come out. After one year, they raised their AAPI members from 4 to 48. Now they’re up to 100.
“It was Leon who gave me that sense of how important it was for the generation before me to give others support. Leon lived his life with grace, dignity, honor, pride and — most importantly — vitality. He has inspired me to pay it forward to the next generation and help others to do the same.
“The Dinner Guys gather around food to raise money to fund the underserved AAPI LGBTQ community in New York City and have continued to raise money for SAGE since its inception. Services & Advocacy for GLBT Elders (SAGE) is the country’s largest and oldest organization dedicated to improving the lives of lesbian, gay, bisexual and transgender (LGBT) older adults. Founded in 1978 and headquartered in New York City, SAGE is a national organization that offers supportive services and consumer resources for LGBT older adults and their caregivers, advocates for public policy changes that address the needs of LGBT older people, and provides training for aging providers and LGBT organizations, largely through its National Resource Center on LGBT Aging.”
This story is part of the Chinese diaspora, as told to @NextDayBetter storyteller Ade Macalinao (@girldrinksbeer).
Inventor, New York
“One of my fondest memories of early childhood is singing with my grandfather. For every occasion, he would have a song.
“When I was 4 years old, we took a family trip to Japan and were walking around a park. At one point, my grandfather suddenly stopped singing, and I knew that something was wrong. There was this pale look on his face, and I realized that he had forgotten the way home. We learned later that my grandfather was diagnosed with Alzheimer’s disease.
“Over the years, his condition got worse and worse, and he started to wander out of bed at night. One time, I woke up to a policeman bringing my grandfather, in his pajamas, home. He had been wandering around aimlessly on the highway.
“My parents are civil engineer professors, so when I was very young, I would go to their labs to tinker with their gadgets, and that got me interested in technology. I knew that I wanted to create some kind of technology that could help my grandfather from wandering. I came up with the idea for SafeWander. The current version is a button that attaches to a patient’s clothing, and as soon as a patient rises out of bed, the sensor sends an alert to a caregiver’s smartphone.
“Over the course of 3½ years, I can’t tell you the number of times that I just wanted to quit. One time, I checked the code for the app and found over 200 errors. I thought there was no way I was going to get through this. With almost perfect timing, I heard my grandfather singing in another room. I went over to him, put my hands over his, and started to sing to him, and he sang along with me. In this moment, his grip started to tighten, and I realized that — even though Alzheimer’s might have completely eroded his memory and he could no longer recall my name — there was still this deep bond that existed between the two of us. I was galvanized to continue working on the sensor.
“Every time I heard an alert, I was reminded of my grandfather’s songs.”
To learn more about Kenneth and SafeWander, visit AARP’s Disrupt Aging profile of Kenneth.
This story is part of the Japanese diaspora, as told to @NextDayBetter storyteller Nina Ho (@NinaQHo).
Jennifer Betit Yen
Actress, Producer and Recovering Attorney, Brooklyn
“Several years ago, I began taping an oral history of my grandmother, an artist born to a very wealthy family in Shanghai, China, who came to the United States in the 1940s to attend Columbia University. The Communist Revolution happened, her family lost everything and, like many lucky and wealthy Chinese at the time, she was able to stay in the United States. This came with a high price tag — she lost her wealth, her education was cut short, and she would never return to China or see her parents again.
“One day, I asked her to describe her life in one sentence. She said, ‘The opposite of a fairy tale.’ She then broke down and told me that her son was abusing her emotionally and financially. So began a dreadful roller coaster ride that ultimately involved social workers and even the police. I felt frustrated at every turn trying to help her. People just don’t want to fight as hard for the elderly. We kept coming face-to-face with the not uncommon roadblocks that prevent the elderly — particularly Asian American women — from getting help. So it was just a really horrible way to end a really beautiful life.
“After my grandmother passed, I had all these tapes from the oral histories we recorded. And I was just trying to make something small for myself, to remember her by. But I was also trying to understand what had happened to her. I felt like a horrible person, like I hadn’t done enough. I wasn’t able to save her. I decided to create a film, ‘The Opposite of a Fairy Tale,’ to try to shed light on this issue, using my grandmother’s story as a starting point.
“I started researching and found out that elder abuse affects so many people, and nobody knows about it or talks about it, especially within the Asian immigrant communities. And so I thought that even though I couldn’t help my grandmother, maybe there was a way I could still help somebody else. I decided to create a film that focuses on non-physical elder abuse.
“I think there has to be so much more dialogue and a complete social shift in the way we look at aging. Because when we talk about aging as being awful and being a disease, we take away all the power of the human being. And all of us are going to get old, so it’s our power that’s being taken.”
More at www.TheOppositeOfAFairyTale.com
This story is part of the Chinese diaspora, as told to @NextDayBetter storyteller Sherina Ong (Twitter: @SherinaOng).
Music and Media Licensing Coordinator, Rockland, N.Y.
“We were naive. We didn’t think that this cancer was going to take my mother away from us. We thought we still had many years to come. Around November, the doctors said her treatment was no longer showing positive results. Two weeks later, her health started getting aggressive and her tumor started growing at a faster rate. They offered another type of chemotherapy, but my mother said no. She said, ‘It’s best for me to stay home and spend time with the family.’ We didn’t know that she was going to leave us in two months.
“My dad said to me, ‘Life moves forward no matter what. You just have to stay strong and keep going.’ But I could tell he felt weak when he said it. You see your parents as the strongest people in your life. But when one starts to fall, you see the other half fall apart too. You see that your role models are hurt. Your heroes are in pain. It’s common for children to be weak, and for the parents to pick them up and make them strong again. But this time it was reversed.
“When my sister told me that she passed, I didn’t know what to do. I was scared and confused. I kept thinking, How can I help my father stay positive? How can I support my dad, my sister, myself? I realized that all I had to do was be there and be strong for them.”
This story is from the Filipino diaspora, as told to @NextDayBetter storyteller Ryan Letada (@Rletada on Twitter).
MSNBC and NBC News anchor, New York
“When we first learned about my father’s dementia, it was like watching my dad die in front of me. His memories were being taken away every day. He won’t remember things that he cares about. And as his memories disappear, he disappears little by little. Sometimes he forgets me and I’ll need to reintroduce myself — “It’s me, Richard. Your son.” There will be a point someday when he doesn’t fully remember me. It’s going to be tough. It’s especially tough on my mom. Taking care of my dad is like raising another kid. She’s 82 years old. She can’t do it.
“On the flip side, we laugh about the silly things that he says. What’s good about my father is that he knows he has dementia. He will joke and around and say “Sorry, my Alzheimer’s makes me forget things.” He laughs all the time. He says he loves me every 30 minutes. He hugs and kisses me. Now, I don’t say anymore that he’s dying in front of me. I say that he’s being reborn. He is being this person that loves life. He has no worries in the world.
“As a journalist, we’re somehow equipped to dive into situations quickly. I’m preparing for the moment when he doesn’t fully remember me anymore. I’m engaging it head on. I’m not running away from it. This is life. As a family, we have to answer the tough questions: What’s the right time to bring in full-time care? Do we remove them from the house and move them to another facility? How do we talk about this with our mom, so that she is not emotionally impacted in a severe way? How do we lead her to that place? What can we afford — monetarily and emotionally?
“I try to go back to visit my dad and mom in San Francisco once a week from New York City. Sometimes, it’s to help with the day-to-day needs of my dad. Sometimes, it’s just me being with my mom so that she can speak to an adult normally. This dementia, although I wish it didn’t happen, is what we have been given. I have to accept that this is part of our daily existence. Accepting helps us enjoy what we do have every day.”
This story is about the Chinese diaspora, as told to @NextDayBetter storyteller Ryan Letada (@Rletada on Twitter).