My Calendar Helps Me Remember Past Medical Events
In my work as a patient advocate for the New Zealand Amyloidosis Patients Association, I occasionally need to assemble content for the awareness projects I’m involved in. Whether it’s a speaking engagement or a mind map diagram for a presentation, I usually highlight setbacks and milestones my husband, Aubrey, has experienced. This helps my audience understand what it means to be a caregiver to a spouse with a rare disease. I always try to be authentic, relevant, and helpful.
Aubrey, 57, was diagnosed in 2013 with hereditary ATTR amyloidosis. Since then, we’ve experienced many pivotal moments in our lives.
He has had to undergo countless biopsies, a liver transplant, and consultations with clinicians, who may have either vast knowledge or a minimal understanding of his disease. He’s had episodes of passing out and being rushed to the emergency department, but he’s also experienced great moments, like bouncing back health-wise when doctors thought he’d reached the end of the road.
Thanks to my calendar entries, I can recount specific events while working on awareness projects. Otherwise, it would be too complicated to recall the many highs and lows of the past nine years.
Journaling can be very helpful for caregivers. I don’t write in a daily diary, but I have become a stickler for keeping a log of appointments in my calendar.
I recently read an article on the DailyCaring website that shared the mental benefits of journaling for caregivers. The article stated that writing down our thoughts and emotions in a diary can help alleviate stress and provide an outlet for releasing pent-up feelings of doubt, anger, sadness, and concern. Writing can also improve our physical health, as the relief it offers can increase the functioning of the immune system.
I agree that thoughtfully working out challenges via pen and paper can help, as I find solace in writing my columns for FAP News Today.
Recording an account of life also gives caregivers an accurate timeline of our loved one’s medical events. There have been many occasions when I had to scroll back in my calendar to find the date Aubrey had his stomach biopsy, or started treatment for amyloidosis. Being able to provide these key dates to his healthcare providers has been critical.
If you are a caregiver, I encourage you to begin recording the times and dates of health-related events. Given the mental and physical pressure we’re under, it’s easy for the days and weeks to slip by. Through record-keeping, you will gain clarity about vital moments and be able to recall useful details.
As tennis champion Martina Navratilova said, “Keeping a journal of what’s going on in your life is a good way to help you distill what’s important and what’s not.”
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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