The importance of being sensitive to the emotional trauma of our children
Rare diseases reshape the emotional world of the entire family
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When people think about hereditary transthyretin amyloidosis (hATTR), they often focus on the physical decline of the patient. What is less visible is the emotional trauma experienced by children who watch their parents slowly deteriorate in front of them.
As a caregiver to my late husband, Aubrey, I witnessed not only the progression of the disease but also the quiet psychological impact it had on our children. hATTR amyloidosis brought fear into our home long before death ever arrived. The children were constantly aware that their father’s condition was worsening, and with that came the terrifying awareness that our time with him might be short.
Children notice everything. They notice when their father can no longer walk the same way, when fatigue replaces conversation, or when hospital visits become routine. Over time, they begin living with anticipatory grief, grieving someone while they are still alive.
That kind of trauma changes a child emotionally. Instead of feeling secure, they begin preparing themselves for loss. Every setback creates anxiety. Every decline feels frightening. Even moments of normalcy become overshadowed by uncertainty about how long they will last.
Protecting our children’s mental well-being
As parents, Aubrey and I spoke often about how deeply the children had already suffered emotionally through the years of illness. We understood that by the time death eventually came, the children would already have been carrying years of grief, fear, and emotional exhaustion. So we made the personal decision not to have a funeral after Aubrey passed away on May 22, 2022.
For many families, funerals provide comfort and closure. But for us, we believed it would place additional emotional pressure on the children during one of the most painful moments of their lives. We did not want them standing in a room surrounded by grieving friends and family while trying to process the loss of their father themselves. We also didn’t want them to feel responsible for comforting others.
After living through years of trauma associated with the disease, we felt the children deserved the opportunity to grieve privately and safely, away from public expectations of mourning. By the time someone dies from hATTR amyloidosis, the family often has already been grieving for years. The emotional toll doesn’t begin at death, but rather long before.
Choosing not to have a funeral was never about rejecting love or support from others. It was about protecting our children’s mental well-being. I wanted to safeguard them from further emotional distress and allow them space to process their grief in their own time and in their own way.
Private grieving removed the pressure to appear strong, social, or composed in front of others. Instead, it allowed us to focus on each other quietly as a family.
Rare diseases like hATTR amyloidosis affect far more than the patient. They reshape the emotional world of the entire family, especially children who are forced to watch a parent slowly disappear while still physically present.
Our children didn’t only experience the death of their father. They lived for years with the fear of losing him. And as parents, all Aubrey and I wanted was to protect them from carrying even more pain than they already had endured.
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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