Why communication is important for amyloidosis patients, caregivers

It has been 17 months since my husband, Aubrey, passed away due to complications of hereditary ATTR amyloidosis. Following his diagnosis in 2013, Aubrey’s journey was wrought with many untold challenges. His pain and struggle were visible to our family, including our four children. As his wife and caregiver, I was perhaps exposed more than anyone else.

Nonetheless, he took it all in stride, despite knowing his prognosis was bleak.

As a boy, Aubrey watched amyloidosis ravage his paternal grandmother and, later, his father. He witnessed how the buildup of amyloid fibrils affected their bodies, causing weight loss, dizzy spells, and sudden falls. He saw how emaciated his grandmother and father looked toward the end, and how they became bedridden before they passed. He also saw their tears of disappointment and sadness at being unable to live a full life because of a condition they knew little about. He remembered their fear and panic at not having any treatment options or supportive care.

Aubrey had firsthand experience with every aspect of the disease, and when he was diagnosed himself, he was prepared to face the worst — though he still hoped for a different outcome. One of his firmest anchors was his faith. As a devout Christian, he held on to the belief that his struggles had a purpose. In the end, he believed, there’s a reason for everything.

But no matter how strong and hopeful he was, he was also human. I knew how distressed he was at the thought of leaving me and the children behind, but there wasn’t much we could do to alleviate this fear.

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Talking about it

As an advocate for the New Zealand Amyloidosis Patients Association, I believe it’s vital to focus on the mental health of patients and caregivers. As much as I encourage both groups to stay positive, it’s equally important to give ourselves space to communicate our fears and concerns.

Accepting the ways my husband changed was difficult, but not having anyone nearby to talk to made it nearly unmanageable. Sometimes I just wanted to give up, but I couldn’t for the sake of our children and my commitment to him.

Now, looking back, I wish I’d had someone to share my struggles with. I encourage patients and caregivers to reach out and find someone to open up to, whether it’s another patient, a caregiver, or a therapist who’s familiar with the demands of a rare, untreatable condition.

As awkward as it may be at first, communication is vital to our mental health. For caregivers, it’s a way to preserve our well-being and help us better care for our loved one.

As the Michael Garron Hospital Foundation notes, “Good mental health is supported by effective communication. When we can articulate ourselves, and really listen to others, it’s easier to understand and be there for each other.”

Sadness, anger, depression, and fear are all legitimate feelings that deserve care and attention. Talking about these struggles with someone we trust can help us process them and move forward. Please do it for yourself, because you matter.

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.