Cultural Differences: The Importance of Finding a Balance in Caregiving

Those of us who are caregivers have many of the same underlying goals. But while we all care for our ill loved ones, our approach to caring can vary. Some of these differences may be due to cultural practices.

I grew up in Malaysia as the eldest of three children. My South Asian descent, experience with the region’s culture, and exposure to my parents’ interactions with each other have all shaped my thoughts about relationships.

Under my parents’ roof, and I imagine in many other Asian families, physical contact, such as hugging and kissing, was not written into the script of our upbringing. When I experienced sadness or heartbreak, I received a silent pat on the shoulder from my mom. Words of affirmation, such as “I love you,” “I am proud of you,” or “You can do this” were rarely uttered. Instead, when we failed, we were chastised for not doing better.

This does not at all mean that my parents did not love me or that they weren’t concerned for my welfare. They simply displayed affection via stern words or acts of service, such as preparing the food I love or nagging me to brush the problem off and pick myself up.

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Fast-forward to today, and living in Western countries for over 22 years has shaped my approach to raising my children and interacting with people. I believe there are merits to the open displays of love and affection in Western culture. But I also cannot let go of the way I saw relationships portrayed during my upbringing. The combination of both Western and Asian practices now impacts who I am as a carer to my husband, Aubrey, who has hereditary ATTR amyloidosis.

Since his diagnosis in 2013, I have had to alternate between a soft, attentive stance and a stern, hard-nosed approach. I suppose this largely depends on my patience on any given day. Inconsistent, yes, but uncaring, never. I challenge anyone who judges me on this merit, because unless you have walked in my shoes, you will never be able to relate to my situation or fully understand my choices.

I am keenly aware that upbringing, social forces, and structural factors such as environment are ever-present, telling us what is or isn’t appropriate in human relationships. But when we’re caring for an ill loved one, there aren’t any boxes to tick regarding a management style. What matters is our relationship with our loved one, and whether we understand each other’s love language.

Demonstrating love and caring via intimacy is important, but so is being responsible for each other. I’ve found that in discussing caregiving roles and expectations, I tend to approach the topic from a Western perspective.

I talk about the importance of self-care and mental wellness for caregivers. I discuss how to support our loved ones through their trials with a rare condition. But a caregiver living in, say, China or Japan, may not be encouraged to take time for themselves or know how to handle caregiver stress or burnout. Many may simply accept their role as fate and do the best they can.

I am fortunate to be able to adopt best practices from both Asian and Western cultures. This has helped me balance my present role as a caregiver to my spouse. However, I do wish to reach out to my Asian cohorts and let them know that as important as it is to be committed in your role, it’s also important to learn to love yourself.

Perhaps, even as I write this, East and West are colliding halfway and achieving equilibrium. That would be a breakthrough for caregiving.

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Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.