Searching for Activities to Do With a Sick Loved One

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by Jaime Christmas |

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hATTR amyloidosis | Main graphic for column titled

To all my fellow caregivers, I want you to know that I understand what you are going through, and I am cheering you on. After eight years on this journey with my husband, Aubrey, it’s still challenging to come to terms with changes in his health.

Since his diagnosis of hereditary ATTR amyloidosis in 2013, the disease’s progression has severely affected his heart and nerves. He fights the misgivings about what lies ahead, but I know it gets a little harder to stay positive with each passing day.

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As his wife, I usually let Aubrey handle his physical ordeal on his own now. I only step in when managing his health alone becomes unbearable for him. Most of the time, I don’t know what I can do or how I can alleviate his severe discomfort. I’m not sure I can do anything to ease his troubles.

Yet, I can keep him company when he feels slightly better, and take this opportunity to do something together. We take short trips away from home, drive to nowhere in particular, or get takeaway from our local fish and chip shop and enjoy a picnic by the beach.

The activities we can do together, however, are becoming fewer and further between. Mingling in public areas also comes with risks due to the state of the COVID-19 pandemic here in New Zealand.

I think I’ve run out of activities that Aubrey and I can do to strengthen our relationship and enjoy our time together, despite the challenges we face. A Google search for “activity ideas for couples” yields suggestions including a date night, exercising together, cooking together, dancing, reading together, and watching TV together. A few are suitable options for us, but we can’t do most of the activities due to health reasons.

This issue isn’t limited to couples, because a carer may be a parent, child, close friend, or hired help. Regardless of the relationship, it can be difficult for carers to find things to do with their ill loved one.

Because the options are limited, perhaps caregivers should develop a list of activities that are possible for those with health challenges. I reckon this would be helpful for many of us who are running out of ideas, but still want to spend quality time making memories with our loved ones.

American poet and philosopher Henry David Thoreau said, “You must live in the present, launch yourself on every wave, find your eternity in each moment.”

activities for patients and caregivers | FAP News Today | Jaime's husband, Aubrey, wears sunglasses and a maroon sweatshirt while driving the car.

Aubrey mans the wheel as we drive to “nowhere.” (Photo by Jaime Christmas)

I’d love to know what activities other caregivers do with their loved ones. Please share in the comments below so we can help one another brave this disease landscape.

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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.

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