My Husband and I Are Finding a New Balance in Life With Amyloidosis

I was in the car with my daughters earlier today, and as we turned onto a busy street, we saw cars already lining up to beat rush hour. It was one of the few occasions when I get to enjoy my kids’ company and feel carefree.

For those reading my column for the first time, I am a caregiver to my husband, Aubrey, who is 57 and suffers from hereditary ATTR amyloidosis. Since his diagnosis in 2013, we have gotten to know the destructive power of amyloidosis firsthand, and the road has been poignant, agonizing, and character-building. The disease has caused us to inadvertently become very different individuals.

Our relationship before Aubrey’s illness was like being on a boat: He was my skipper, my engineer, and my navigator. Then the clouds got dark and the sea got stormy. My role as his trimmer and helmsman gradually expanded as I took on his responsibilities.

I try to stabilize the boat and keep it from sinking. I ensure that other passengers on board do not get tossed into the raging sea. At the moment, I have no idea how well the engine is doing, but I don’t have the energy to inspect it. Some days, the boat goes off course, and in times like these, I get on my knees and pray that the strong gale trying to break us will also blow us back on course, where we are meant to be.

Confrontation ensues on days when the neuropathy pains are manageable and gastrointestinal issues don’t knock him out, as he tries to assume his old positions once again. But it is never the same as before. We cannot turn back time.

Danish philosopher and theologian Søren Kierkegaard said, “Concepts, like individuals, have their histories and are just as incapable of withstanding the ravages of time as are individuals. But in and through all this they retain a kind of homesickness for the scenes of their childhood.”

According to the National Health Service website, patients diagnosed with a terminal condition may experience a range of emotions, including shock, resentment, frustration, and sadness. Even with friends and loved ones surrounding them, it’s hard to shake the feeling of isolation. The overwhelming emotions are real and present.

Eight years after his diagnosis, my husband still battles with mental and emotional agony as he longs for the days of the past to return. But he knows this is just wishful thinking.

So, on days when he is feeling better and more optimistic, I remind myself to let him take the wheel. The sense of control helps him feel better about himself and allows him to take his mind off his troubles. Handing our duties back and forth isn’t easy. But when you’re dealing with a disease like hereditary ATTR amyloidosis, nothing is normal or straightforward.

I can only control my attitude and actions. But how can I be kind and perceptive when I am worn out? I have yet to figure this out. In the meantime, I get in the car and take a ride with my girls.

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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.