Living in the Present Can Help Us Better Manage the Future
How focusing on the present moment can benefit rare disease caregivers
After I finish writing this column, I will meet a few friends for dinner. But socializing without my husband beside me still feels foreign.
Mary-Frances O’Connor, an associate professor of psychology at the University of Arizona, describes the grieving process as a way of learning how to be in the world without your loved one. “The background is running all the time for people who are grieving, thinking about new habits and how they interact now,” O’Connor told NPR in December.
That is precisely how I feel, but I’m not shying away from embracing this part of my journey. I know it’s vital for moving on and finding strength for what lies ahead.
For those new to my column, my name is Jaime, and on May 22, I lost my husband to hereditary ATTR amyloidosis. Aubrey was diagnosed in 2013, and after nine years, his heart finally gave out on him. We had been married for 27 years, and even though the last few were challenging for both of us due to his disease progression, we did our best to cope with the illness. Aubrey was a fantastic husband and a wonderful father to our four children.
Now that he’s no longer with me, I’m adjusting to being alone. My experience as his caregiver is embedded in the past. I’m now trying to live in the present and be optimistic about the future.
The reality for many of us who are caregivers to someone with a terminal condition is that we know what lies ahead. We still hold on to hope that some miracle will alter the outlook, but we live in the present and consider every day with our loved ones a bonus. Looking back, every minute Aubrey and I spent together was precious.
Irish poet and playwright Oscar Wilde said, “Memory is the diary we all carry about with us.” Like a diary, we record both the good and the not-so-good in our minds. However, these days I seem to only be able to recall the happy times with him, and very few of the challenging ones.
Perhaps it’s the opposite for others who have gone through a similar experience. The arduous nature of this disease can make it difficult to hold on to the good, and some focus on the downside. Seeing your loved one practically disintegrate in form and nature right in front of you is heartbreaking. Remember, no matter the challenge, we must find balance to keep our head above water.
Admittedly, it’s difficult some days to see the good and experience the joy. When Aubrey was in a great deal of pain and discomfort, and his condition became too challenging to manage, he’d become incorrigible, petulant, or passive.
But don’t give up. Find joy in your time together, and never lose sight of the person behind the illness. They are still there, and need you to bring life back into focus. I am here to tell you that you can do it. Your future outlook hinges on how you handle the present.
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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