As Caregivers, Anticipating the Worst Allows Us to Be Prepared

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by Jaime Christmas |

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As a caregiver, have you ever felt like you’ve been thrown into the deep end and are treading water just to survive? Perhaps this overwhelming experience doesn’t happen regularly enough to leave an impression, but when it does, it can feel like the rug has been pulled out from underneath us, and we have to use every ounce of strength to stay focused.

My husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013. Since then, his condition has progressively worsened. The main concern is his heart, considering there are amyloid deposits between the muscle walls, which has caused cardiomyopathy, or heart stiffness.

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In June, he suddenly collapsed at a chiropractor’s office after walking through the clinic’s doors and had to be rushed to the emergency room unresponsive. When I received the phone call from my daughter, who was with him when it happened, I had to tread water to stay above the surface.

I recall saying a little prayer and telling myself to pull it together. I needed to remain calm for my children’s sake and be prepared for whatever the outcome may be. Thankfully, Aubrey recovered after two weeks in the hospital. That whole episode will be forever etched in my memory.

Yet, when the situation arose, I was prepared for it. Something tells me you will be, too.

Prior to that eventful day, I had often pictured how I’d react when conditions took a turn for the worse. I have often felt a crushing fear that I wouldn’t be able to handle it. As caregivers, I don’t think we can avoid imagining scenarios in which we lose our loved ones. I think it’s a coping mechanism that we subconsciously prepare for the worst. The more prepared we are, the more likely it is that when disaster strikes, we’ll be able to quickly regain our composure and think clearly about our next steps.

Caregivers may constantly worry, particularly when our loved ones fall ill. Although we’re often told not to become devastated with concern, there can be positives to worrying, explained psychologist Kate Sweeny, PhD, in an article published in Social and Personality Psychology Compass. Worrying prepares us for when the undesirable happens. Worrying also spurs us to take action to prevent the inevitable from occurring.

As caregivers, I believe we should cut ourselves some slack and embrace what we are going through. The process and our experiences help us become the best version of ourselves.

Even if I do fall apart when the time comes, I know I will make it out just fine. We simply need to believe in our abilities.

“Hoping for the best, prepared for the worst, and unsurprised by anything in between.” – Maya Angelou


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.


claire hargreaves avatar

claire hargreaves

My son is 34 and has been diagnosed with fap - he has had his colon and rectum removed. His son who is 12 has also been diagnosed with fap - Is there any trial that they can be enlisted? Please advise.


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