Making the Right Decision at the Beginning Helped Me in the End

Some time has passed since I lost my husband on May 22. For nine years, Aubrey suffered from hereditary ATTR amyloidosis. Despite the toll of this disease on his body, he stayed positive. My late husband held on to the hope that a treatment or cure would be found, and he would be able to improve. Alas, this was not the case, yet at the very end, he still fought to get better.

As a caregiver, I have experienced all the highs and lows of what Aubrey endured. In our 27 years of marriage, I have seen him transform from a career-driven perfectionist to someone who accepted that life is worth more than titles and other material things. He ceased complaining about mundane issues and gradually built his resilience, even when faced with extraordinary challenges due to his illness.

Now that he is no longer around, our children and I bear witness to how people he worked with, and even some friends, never knew the depth of his pain and discomfort. I know that complaining about his shortcomings was not at the top of his list of things to discuss. In comment after comment, I am learning what a tremendous trooper Aubrey was.

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I now know of my late husband’s positive legacy, planted and watered by the love and encouragement he received from his immediate support system. Our four children did their best to be available for him. Our close friends who journeyed with us never once complained when Aubrey needed more time to prepare or keep up. Instead, they were always so patient and kind.

Last, but not least, if you are a family caregiver reading this, the soil from which your loved one will thrive is cultivated by you. When Aubrey became unwell and was diagnosed, my personal journey took me through some very dark valleys. I was afraid, troubled, fearful, and flustered. The future was bleak, and I initially sought an escape from the misfortune.

But I am now thankful that I didn’t. I became determined to see the situation through, no matter where it ended. So, for nine years, he and I held on to each other and trusted that God would see us through this. From that, I now can see the sheer amount of courage and endurance we mustered from that single decision not to surrender.

Do not give up on each other. Don’t let go. And no matter how difficult and somber the future may be, understand that there is also beauty unfolding. Every decision leads to an outcome, so be patient and know that you are doing an amazing job.

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.