How Caregivers Can Be Aware of the Swinging Pendulum of Emotions

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by Jaime Christmas |

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It is interesting how human emotions can fluctuate like the ebb and flow of the tide. I am usually upbeat and composed, but at the drop of a hat, I also can become upset and intolerant.

I liken emotions to the weather. At times, we can predict the conditions and prepare. Other times, we’re unable to anticipate when the rain and the gale-force winds will hit. My brain and heart are constantly battling, and despite reason and intelligence, I can’t avoid getting worked up. Sometimes this happens over large issues, but more often than not, it’s over small ones. Humans are such complex creatures.

In 2013, my husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis. Three years later, he received a liver transplant, and early last year, he was fortunate to be treated with Tegsedi (inotersen), a treatment designed to prevent the buildup of amyloid deposits. He is the only person in our homeland of New Zealand to be afforded this life-prolonging medication.

So, when it comes to feelings, perhaps it is no wonder why both of us are so susceptible to the swinging pendulum of emotions. I am largely influenced by the stressors of being his caregiver, having to run a household, and working full time in a patient association that represents amyloidosis sufferers.

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Sometimes I imagine how different things might be if Aubrey were well and didn’t have to suffer from this diabolical condition. In the same regard, I imagine Aubrey also endures the countless times he probably wishes he weren’t sick and wouldn’t have to see his family experience the pain of his suffering.

I believe that when sad or negative emotions hit, we should allow ourselves to ride them out and not fight them. I want to respond to life, not react to it. By this, I mean that no matter what circumstances come my way, I choose to respond to them.

If a condition is bad, I want to acknowledge what is happening and act accordingly. When I permit myself to feel annoyed and embittered, I am letting myself embrace and understand myself. With this comes the ability to self-reflect to root out the origin of the discontent in the first place. I am responding and not reacting.

This is a practice that can help my fellow caregivers understand and empathize with our loved ones. The author of the book “How To Love,” Thich Nhat Hanh, says that, “Understanding someone’s suffering is the best gift you can give another person. Understanding is love’s other name. If you don’t understand, you can’t love.”

These are beautiful words that truly reverberate with me. I am constantly fighting to understand my husband. Amyloidosis works against me, because the moment I start believing that I have his desires tagged down, the disease will come along and shift things around. The physical pain drains him, the mental pressure encumbers him, and the ability to fight against adversity gets weaker. It is only through understanding that we both can push forward with this journey we are on. It’s a difficult one, but it’s also worthwhile.


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.


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