Mental flexibility is key to coping with my role as a caregiver
I finally understood that I didn't always have to be strong
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When I first found myself in an intense caregiving role last year, I promised to stay strong for my mom, the patient, and my dad, her devoted caregiver. It proved more difficult than I had expected.
I felt particularly vulnerable at night when processing the day’s information, as the fear, anxiety, and sorrow became more vivid. The truth was, I didn’t understand the magnitude of the situation or have any clear sense of certainty. It left me feeling as if I were falling into an abyss.
It started when Mom was sent to the emergency room in Taiwan last year after she fainted. She spent five days in the intensive care unit and another two days in the hospital ward. She was discharged to wait at home for the specialized cardiologist appointment scheduled a week later, only to be sent back to the ER the next day. After two weeks in the hospital, she finally saw one of the few cardiologists in Taiwan who treats cardiac amyloidosis patients.
Finding the strength to juggle
During that time, Dad and I visited her twice a day, bringing meals that she liked, essentials that she needed, and our company. Knowing Mom loved homemade food, Dad spent each morning cooking, while I divided my time between errands and catching up on work before we left for the hospital.
When we arrived early enough, we spoke with the doctor about Mom’s condition. Otherwise, we heard updates from the nurse who administered the medication during our visit. We asked Mom how she felt, and when she complained about something, we helped her explain it to the nurse, who would then check with the doctor for us.
In the afternoons, we usually went home while Mom napped. After a short rest at home, Dad planned dinner dishes and I worked a little more. My siblings joined us for evening visits whenever they could. If Mom requested something for breakfast the next morning, one of us picked it up before leaving the hospital.
Vulnerability brings more sustainable strength
The reality of caregiving is that there is very little time for caregiver self-care, given the intense physical and emotional demands of the role. Nighttime was especially hard for me because that’s when my thoughts turned to what might happen next, and negative emotions started to hit me. I remember waking up in the middle of the night, feeling the heartache from the fear that Mom might no longer be there when I visited again in the morning.
I finally sought help when I realized that my emotional state had become dependent on Mom’s condition each day. I started talking to a therapist about the overwhelming experience. One thing that helped was when the therapist told me I didn’t have to be strong in this situation. It wasn’t an immediate click, but I began to see how I was trying too hard to hold things together that could, sooner or later, slip apart.
That gradual self-awareness helped alleviate the overwhelming anxiety and encouraged me to start living my own life again.
A couple of my old friends were planning a reunion in California before my family situation disrupted my life. Although the trip was not until three months later, I told my friends I likely couldn’t join. I wanted to keep myself open for any possible family need; mentally, I also just didn’t feel in the mood. My therapist encouraged me to reconsider. Eventually, I took the trip, and it turned out to be a great time catching up with dear friends, sharing life’s sweet and bitter moments with them and their families.
Mom underwent tests and received recommended treatments after seeing the cardiologist. Compared with a year ago, her condition is much more stable now. Although I’m still living with uncertainty, knowing adversity could return at any time, it doesn’t mean that I have to carry fragility and fear every day. When I think about the future, anticipatory grief still rises to the surface. I know I will feel pain and anxiety again, but allowing myself to be mentally flexible through difficulties is the real strength. I finally understood the old saying, “The bamboo that bends is stronger than the oak that resists.”
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.
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