Confronting Death When Our Parents Age

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On April 16th, during the weekend of the Khmer New Year celebration and Day of Remembrance which marked the 41 year anniversary of the Khmer Rouge genocide that killed over 2 million Cambodians, I hosted a small, intimate roundtable discussion on initiating “end-of-life” care conversations with our loved ones. In the Khmer-American community, the generation of refugees who arrived in America after the genocide are aging and becoming senior citizens. As they transition into elderly status, how do their adult children take on the reality that their parents would soon decline, and eventually pass on? Furthermore, how do elder loved ones in the Southeast Asian communities deal with the issues relating to aging?

I was inspired to take on this subject as both of my parents just entered into their 60s. Both of my parents were survivors of war (my mom’s family escaping from the Vietnam War while my dad survived the Khmer Rouge genocide), and experienced many of the PTSD issues that are connected to those traumas. Four years ago, my mother suffered a stroke. Before I turned 30, I would soon share the responsibilities with my brothers on being her caregiver. Meanwhile, my father has struggled mightily with his own PTSD issues after his escape from Cambodia, and his own mental health struggles would become a major hindrance during my mom’s recovery.

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Through my experiences being my mom’s caregiver, I was confronted with my own challenges in being able to give her the emotional support she needed. It required confronting my own complicated relationship with my parents. From my teenage to early adulthood years, I rebelled against my parents’ ideals of being an “obedient son”, a family prize that would achieve success in the medical and science field ( a place that my dad once said that “most Asian people” belong to), and bypassing my family culture that I found too oppressing and limiting altogether. I found it challenging for myself to reinvent my relationship with my mom. The years of limiting my emotional accessibility to her has been a barrier in giving myself the opportunity to hold the conversations I am wishing to have.

The reality that for my mom and for our loved ones, they are on borrowed time. When we think of buying eggs or a carton of milk, we look at the expiration date in the back, and think of what meals we can make out of in a specific time. With our loved ones, we don’t have the luxury of knowing when they’ll pass on, and oftentimes, we may not be so fortunate to spend the kind of quality time with them before they expire.

With the current group of US survivors from the Khmer Rouge era aging, there is a growing need to have a discussion on what their needs are, and how they can discuss them with their loved ones. The reality of facing pending mortality is an emotional trigger in the senior community. For the Khmer Rouge survivors, it also triggers memories of facing near death when they were fleeing / surviving from their homeland. As many of their children are now in their adulthood and starting their own families, elderly parents find it challenging to express what their needs are, and how to communicate it to their adult children.

During our roundtable discussion, I first did an ice-breaker where I asked everyone to think about a special loved one in their life, and asked another ice-breaker about a time when they made a decision that improved the quality of their life. This would lead into the main discussion of how empowering it is to be able to make your own life decisions and how you can involve your loved ones in the process. We would share stories on our challenges of initiating “end of life” care discussions with our parents and siblings. Their parents often become reluctant to talk about death with their children. Instead, they would casually joke around, and say “well, you better take care of us when we get old, okay?” One of the takeaways from our story-sharing was that we were conditioned to not become “overly emotional” or sensitive in front of our family as it is a sign of weakness. In typical of most Asian communities, it can be harder to express those vulnerabilities. This hinders our ability to verbalize our own needs, and how we want to be taken care of before we pass.

From my own experiences, I remembered my dad and male members of my family ridiculing me if I started crying, or expressing my feelings to them. By attempting to eliminate that part of my emotion, it created a lifelong struggle with being able to personally connect with my family. I rarely allowed my family access to my personal feelings; I had difficulties telling my family when I was getting bullied in school, or that I ended my friendship with an old high school friend, etc. As my mother’s caregiver, I found it difficult to have that relationship where it required me to be open and vulnerable to her. By avoiding it with my mom, I am often left feeling guilty that I have continued to neglect the many days that I could have had to improve my relationship with her.

In our group, we are left uncertain on how to express our love to our parents, and how we can best support them emotionally as they deal with the hardships of aging. We also see the value of how important our relationship with our siblings are, and how they can play a role in the handling of our parents’ care, and after their passing. We shouldn’t have to shame ourselves of our feelings when it includes fear, anxiety, depression, and anger.

By asking what our parents want and involving the family members, there is a fine line between controlling someone and guiding them to make the right decisions. We also have to be aware of what the end-of-life situation could look like. Do my parents want to stay on a feeding tube or on life support? What is the impact of someone that has a DNR (Do Not Resuscitate) order? Who are my parents willing to designate as their Power Of Attorney in their family to make health care decisions on their behalf if they are no longer able to? What ways can we educate ourselves and our family about these options? How can we empower our parents to make these decisions on their own? How can we start thinking about the “quality” of care that impacts them? There are also situations when our parents are not willing to have that discussion, or are no longer wanting to make decisions on their needs and final wishes.

With the generational differences heavily prevalent in regards to education, culture, language, intergenerational trauma, and economics between our parents and us, as adult children, do we have enough of a starting point where we can overcome our discomfort in talking about what life would look like without our parents present? Do we have what it takes where we can strengthen our trust and put aside our past insecurities with our parents and siblings? As adult children, we are in the process of establishing our own future, and at the same time, we must also consider how we can support our parents’ future. This can only happen by asking.

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From the Heart of the South Pt. 1

Thoughts that have come up during my brief road trip to the South:

My Grandma

In the last couple of years, my grandma has continued to decline as her dementia progressively worsens. I last saw my grandma two years ago as she still knew me then. She was already showing significant physical and mental decline at the time. Despite the setback, she was eager to see me. She was still her normal, shy, overprotective self, and would ask me in Vietnamese of where I’m going and when I’ll be back. As I left her home, she hugged me, and slipped $30 in my pocket for gas money on the way home. I knew then that this was the memory that I wanted to hold onto because it would not be long before her collection of memories began to disappear from her body.

When we arrived on Monday morning to her home, she opened the door and gleefully smiled as she saw my brother, and asked my mom if it was her. She seem pleased to see us, but as I made eye contact with her, she looked past me. She made no reaction when she saw me, not even a “Who are you?” remark from her. From her reaction, it’s almost as if my 6 ft, 200 lb frame magically turned itself into a ghost as she didn’t acknowledge my presence. She asked my mom if Andy and I were her two sons. My grandma barely communicated with us, as she spent most of her days sitting on the coach watching TV, or randomly going outside picking at the weeds even when she’s been told countless times to not go outside. I had learned a great deal about Alzheimer’s and dementia through my recent work with seniors, and would try to educate my family about how to deal with my grandma’s condition, yet it still did not prepare me for the reality that my grandma could not remember me. I became afraid to go near her for fear that I would scare her. As her memory continues to fade, our family is faced with the uncertainty of how to prepare for her end-of-life care.

The lack of accessible senior care in the rural South in addition to the lack of language / cultural needs have made the process of finding quality care for my grandma that much harder, and puts the burden on immediate family members to fulfill their caregiving roles. The generations-old Asian tradition of taking care of your elderly parents seems almost daunting now as many adult children are working longer hours and unable to provide the level of quality care their parents deserve.

My grandma is the only living grandparent I still have. On my father’s side, both of my grandparents have passed. My dad’s mother died when my dad was little, and his father died when I was 9 years old in Vietnam but I never knew him. My grandpa on my mom’s side was the grandparent I bonded most with, but died a month before my 13th birthday. My grandma, despite living into my 30s, was one I knew little about. We lived almost a 1,000 miles apart between Chicago and Bayou La Batre, but my mom had a sometimes estranged relationship with her which led me to not be able to see her for 11 years in 2011. It was having that decade-long gap of not seeing her that I personally feel sadness and shame with. I wonder how is it that I let so many years slip past me that I couldn’t see her. Why did I not advocate hard enough to my mom about letting me see her? Why was I so frightened by my lack of ability to speak in my grandma’s native tongue that it would prevent me from making that trip? How could I not allow my grandma to play more than just a mere backdrop in my life? Those are questions that I have to ask myself when I see my grandma in her current state.

Despite the many years that I did not see her, my grandma loves me and my brothers in our recent visits. Her gleeful expression at our arrivals erased our concerns that she would begrudge us for neglecting her. I admit that my just recent visit didn’t provide me the quality time I should have spent with her, but as I left, she smiled and wrapped her frail arm around my waist. As we were set to depart, my grandma looked on from the porch and waved us goodbye. Even as she sees us as strangers, she can still remember how much she is loved by us.