A Chinese American Caregiving Story as told by Nancy Mak-O’Leary (Family Caregiver and Hamilton-Madison House Community Member)
"King, the son of my great aunt, turned 66 this year. He has an intellectual disability and autism. While my great aunt was alive, I avoided him because I didn’t know how to deal with him. His mother always wanted me to take care of him. I never said yes, which is my biggest regret. When she was on her deathbed, I told her I would do it, but I was just trying to make her feel better.
When we moved in with him, privacy became the biggest sacrifice. It was tiring, actually. We didn’t know him, and he didn’t know us. Just getting to know each other took time. He knew who we were, but he was suspicious of what we were doing. He started to develop a wall.
So my brothers, our spouses, and I read all the books about autism. We treated him like he was one of us. We didn’t treat him like a special person. We conversed with him. We talked with him about the news. Eventually, we got used to each other. Three months after we started to care for him, my brother hugged him and he hugged my brother back. Now we all just hug each other. Those are very touching moments for me.
I was diagnosed with breast cancer this year. I was so scared, because the first thing that occurred to me was, ‘Who’s going to care for him?’ It’s not easy to ask people to step in, change their whole lives, and care for an adult. I just take care of myself so I can take care of him. What I do for myself is the same thing I do for him.
It may have started out as an obligation to care for a relative. But after three years, I truly love him. My husband and I have become better people because of him. Every day is a learning experience for me. I’m used to caring for the people I love, but I learned that I can also grow to love someone who was once a stranger to me. I don’t know if I’m doing a good job or not. But I’m trying the best I can, and the best care I can give him is love.”
About: NextDayBetter x AARP AAPI Community is a storytelling campaign inspired by AAPI caregiving. How do you give care? Tell us via #AAPIshareyourcare #AAPIEnduringTogether #NationalCaregivingMonth
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