Staying the Course Despite the Trials We Face as Caregivers

Earlier today, I had the privilege of listening to a fellow carer share the mental, emotional, and physical trials she experienced while supporting her late husband, who was afflicted with hereditary amyloidosis — the same condition my husband, Aubrey, has. I couldn’t help but get choked up with emotion.

I was touched because I could empathize with her. Although some of her encounters may not be identical to my experience, the underlining testimony is the same. We have both faced exhaustion, disillusionment, and, at times, desperation. We have felt isolated and have struggled to get help when we needed it.

As I took in her words, I was astounded by this woman’s commitment to her husband. The responsibility she bore ran deeply. She used to ferry him around on her back so they could enjoy being out of the house together. He had lost his ability to walk, and a wheelchair was not available, so she carried him.

Not once did she complain about anything she endured, and I never sensed regret in her voice. I only saw determination and resilience in her.

I began to reflect on my own motivation as a carer, and conducted a spot-check for areas I need to work on to stay the course. I wondered: Should the day arrive that my husband becomes immobilized and encumbered by his disease, will I be able to make him happy? Can I disregard everything around me and solely focus on his needs? I believe I can. But if I can’t, I now know that I can always reach out to an amazing lady who has been there.

In 2018, the late actor Chadwick Boseman, who starred in Marvel’s “Black Panther” franchise, delivered the commencement speech at Howard University.

He said, “When completing a long climb, one first experiences dizziness, disorientation, and shortness of breath due to the high altitude. But once you become accustomed to the climb, your mind opens up to the tranquillity of the triumph. Oftentimes, the mind is flooded with realizations that were, for some reason, harder to come to when you were at a lower elevation.”

As carers, we have a long uphill battle ahead of us when it comes to tending to our loved ones. The ascent will be arduous at times, but with each hurdle we overcome, things will become more manageable. We can’t over-anticipate, nor should we give up early.

Stay the course if you can, and reach out when you need help. There is no shame in admitting when we need support. Discovering what truly matters can help you handle your situation. You are stronger than you think.

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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.