The Importance of Thinking in Advance About End-of-life Arrangements

If you are new to my column, my name is Jaime, and I was a caregiver to my husband, Aubrey, until he passed away on May 22.

Aubrey had been diagnosed with hereditary ATTR amyloidosis. For nine years, he fought bravely against a disease that robbed him of the ability to properly function as a human being. But even with his limitations, he didn’t dwell on what he no longer could do and instead channeled his energy to do what he still could.

Now that he is no longer around, I am learning to move forward without my partner of 27 years. People tell me that time is a healer, and given enough of it, the loss will sting less while the void from his departure will begin to fill with fond memories of his time with us. Perhaps.

Now that it has been a little over a month, I can see that with each day that goes by, the remedy for a heart that still yearns for someone no longer around is to fasten oneself to an area of interest that will provide purpose and pride. Otherwise, the vacuum from his departure can easily throw me off balance, especially when I need to be fully functional to assume responsibilities for things he used to be in charge of.

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Suddenly, I now have oversized shoes to fill as his next of kin. It is overwhelming if I overthink what he has left for me to do. Some things have been relatively simple, thanks to the preparation he had done to preempt him not being around. But there are also financial decisions that I now have to make on my own.

Hence, a word of advice: Do the legwork and formulate a plan. Talk about what needs to be done should anything happen to either of you. I am fortunate that Aubrey did not leave me to figure everything out alone. Nonetheless, there are still some things I wish I had spoken to him about in more detail.

Preparing a will can sometimes feel premature or almost taboo in some cultures, but leaving formal instructions and specifications to those left behind is valuable. You remove the added stress to loved ones already struggling with loss.

With an illness with no known cure, like hATTR amyloidosis, advance planning needs to happen and is a massive component of care. It’s a complex topic to handle, but trust me, do it early, and later on, you will be thankful you did.

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.