Reminding myself that I’m family first, and a family caregiver second

When I first started caring for my mom, I spent more time studying her condition, hereditary transthyretin amyloid cardiomyopathy, than actually caring for her. Back then, amyloidosis felt like an intruder from uncharted territory, and I believed I had to understand the enemy before I could fight it. That survival instinct was understandable, but it didn’t always give my mom what she needed most.

At the beginning, everything felt urgent. My mom went to the emergency room and spent a week in the intensive care unit. Only then did we learn the possibility of a rare condition. By the time it was confirmed, years had passed since her first symptom.

I sprang into action to learn about the treatments, latest drug developments, and prognosis. The last thing I wanted was to miss any crucial piece of information that might save us from a downward spiral. I wanted to help the doctors help her. In other words, I wanted to be my mom’s doctor and cure her.

Once I spelled it out, it was obvious that what I wanted was unrealistic. But that desire came from my deepest fear. When survival feels at stake, it’s only natural to fight with whatever tools you have, and mine was research. What I hadn’t considered was that research wasn’t the only thing that mattered.

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After the shock of the first few months, it became clear that threats come in waves. One day, I thought I had everything covered; the next, something new came along and I was back in fight mode. After a few rounds of this, I knew it would be constant. We’re here to both fight and live with the condition for as long as possible.

Last month, I asked my mom to describe why she felt a sudden urge to cough. She’d been having intense coughs once in a while. She’d mentioned it to her cardiologist and seen a pulmonologist. They found nothing obviously wrong and suspected allergies.

“Was it something in your throat? Or maybe an itch?” I asked. She couldn’t describe anything beyond wanting to cough. I suggested it might be a nerve issue and that we could see the neurologist to find out. She exhaled and said that she was old, and we could just let it be.

That was perhaps the first time she suggested a medical investigation wasn’t necessary. At that moment, I saw that more medical information might not help her the way she needed. She knows her body has some faults, big and small, but she’d like to look past them sometimes to live the life she wants.

Simply be family and help her live

I’m my mother’s daughter first, but sometimes I overplay the importance of medical support in her daily life. News about her condition still gets published from time to time, but not much of it will change her treatment or her life right now.

I see her happiest when we try a new local café or restaurant, when she sees friends and family, and when we have time to talk about what’s happening in the world. When there’s something on the calendar, she has something to look forward to and finds purpose.

The word “progressive” made me picture a trend line heading down forever. Real life is far from a one-directional line. Our emotions have peaks and valleys, and part of caregiving is riding alongside our loved ones through the waves. I know we’ll need resilience and that it won’t always be easy, but being together makes it easier.

I didn’t follow my mom’s instructions completely. When I found time later, I still did a little research about coughing and the role nerves play in the symptom. It’s on my list of questions for the neurologist next time we see him.

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.