The challenges of adapting to life with chronic illness for patient and caregiver

Illness casts a shadow over the lives of both the patient and the caregiver. In my family’s situation, my mom, Feng-Ying Wu, is the patient, and my dad, Hsin-Chun Ho, is the caregiver.

Mom was diagnosed with cardiac amyloidosis in 2025. As an observer of their shifting lives, I began to see how they were spun around each day by a dominant presence: the illness, an uninvited “third-person” that lives with them under the same roof.

Ever since, their world has been changing, sometimes faster than they can adapt. While learning to accept the new reality is necessary, it didn’t come without hardship or conflict.

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Mom had always been eager to hire a helper to assist with her care and the household chores. In her mind, it was also for Dad’s sake, so he wouldn’t have to shoulder additional responsibilities at his age. Dad, on the other hand, seemed more hesitant. I wasn’t sure whether he believed he could handle everything on his own, or simply disliked the idea of having a stranger in the house.

Eventually, we hired a helper through an agency. Two weeks after the helper started, Mom messaged me about terminating the contract. I knew something had gone wrong and called her immediately.

Her voice sounded dry and flat at first. After a few questions, it turned out that she and Dad had an argument that day. I tried to piece together what led to this point.

“If having the helper around causes so much tension,” she said, “I’d rather not have anyone.” Her voice grew increasingly agitated as she spoke, revealing the stress she had been carrying throughout the day.

A few minutes later, Dad’s voice drifted in from the background. Perhaps he had overheard our conversation and wanted to share his side. On the other end of the phone line, I could vividly feel two weary souls, weighted down by the illness and a worsening quality of life.

The argument was not really about the helper. It started when Mom refused to eat the food Dad had prepared — a familiar conflict since her illness began. I could almost hear Mom’s frustration with her lack of appetite and, at the same time, Dad’s frustration in his efforts to improve Mom’s health.

The situation might have been further complicated by the helper’s presence. Mom offered the food to the helper instead, which from Dad’s perspective felt like more than a simple rejection — it seemed he had become secondary rather than the primary caregiver.

Learning to adapt

I could understand the challenge for both of them in adapting to the changing dynamics. Mom was coping with the worsening physical condition while still trying to live as fully as possible. Dad had taken on a new job as the trainer of the helper while also sharing his home with a stranger.

Beyond that, there were still constant doctor appointments, new medical information, changing prescriptions, and the daily tracking of Mom’s condition. They were still learning about the “third-person” that entered their lives in various ways, shapes, and forms.

I didn’t have to mediate between them too much other than listening and stating the obvious. They moved past the argument within a day or two. The helper stayed. Mom returned to planning her days, filling them with as many activities as her body allowed. Dad resumed his long list of daily tasks as a caregiver, just the way he liked it. Gradually, they regained the balance between the patient’s and the caregiver’s distinct needs.

This has been part of their life now: falling out of sync, then gently finding their way back. The “third-person” that casts a shadow over their relationship also sheds light on the unwavering love between them.

Note: Amyloidosis 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 Amyloidosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.