Why Intentionality Matters When Spending Time With an Ill Loved One

I spent half the morning figuring out our plan for Christmas. In recent years, it’s been a tradition for the whole family — including pets and my children’s partners — to go away for the holidays. We would book a holiday home near the beach and spend a few days enjoying the festivities.

Because my husband, Aubrey, has hereditary ATTR amyloidosis, spending time together requires planning and intentionality. Travel usually involves planning, but additional steps are involved when accommodating the needs of someone with a disability.

As a caregiver, my goal is to replicate the comforts of home in a different location. I must anticipate everything that could go wrong with my husband’s health during our trip, and then work backward from there. I also have to pick a place that’s not too far from a medical center, should an emergency arise, but that’s also in an environment where we can enjoy the sights and sounds. It is a holiday, after all.

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Since Aubrey’s diagnosis in 2013, our family has been through many ups and downs together. Our four children, now all young adults, had to grow up more quickly than their peers to face the prospects of his disease. We all have accepted that Aubrey’s time with us is precious. So, when we go away for a trip together, our intention is for him to have a good time and a memorable Christmas.

Though they sound the same, intention should not be confused with intentionality. An intention is a desire or aim to achieve a certain outcome, while intentionality involves implementing certain practices or processes to ensure that outcome happens.

I believe it is essential to highlight this, particularly in the caregiving space. Years ago, when Aubrey first started displaying minor symptoms, I wanted him to stay positive and not dwell too much on how he felt. I wanted to help him remain as “normal” as possible. But my wants didn’t translate into actionable steps.

Looking back, this led to misunderstandings and breakdowns in communication because my wishes often remained in my head. It became a mental block for me, as I didn’t want to entertain the thought that he may actually be suffering from the onset of amyloidosis. My intention was good, but my actions were not.

Aubrey enjoys a book at our holiday home. (Photo by Jaime Christmas)

Fast-forward almost eight years later, and I have shifted gears. When I do something that involves Aubrey, I decide what outcome I want to achieve, then plan my actions accordingly. My children have adapted to this practice as well. When we plan events or time with him, we keep the desired result in mind so we can take steps toward achieving it. We never want Aubrey to feel disappointed or let down, though sometimes it’s unavoidable due to unforeseen issues.

Intentionality is not about being in control all the time. It’s about us doing our best, so that he receives the best of us and from us.

I still have no idea what the plan is for Dec. 25, but you can trust that it won’t be mediocre.

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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.