The Importance of Maintaining Our Well-being as Caregivers

Neurologist Donn Dexter wrote an article last year for the Mayo Clinic titled “5 tips to keep your brain healthy.” I thought it was a good read, as it reinforced the importance of staying well to be able to care for a spouse who is afflicted with hereditary amyloidosis. My desire for caregivers reading this column is to become more aware of how pivotal it is to keep mentally, physically, and, if applicable, spiritually well. We are no good to our ailing loved ones if we are falling apart.

Since his diagnosis in 2013, my husband, Aubrey, has faced tremendous challenges in dealing with this debilitating disease. Amyloid deposits likely started in his gastrointestinal tract, and soon spread to his heart, nerves, and other vital organs. There is no known cure, and even with the treatment he is receiving, it is sometimes very difficult to see the light at the end of the tunnel.

As his carer, I walk with him on this journey filled with ups and downs. I am there on good days and not-so-good days. If I am not careful, my negative expectations about his outcome can drag me down and inadvertently add strain to our already frail situation. The last thing I want is for Aubrey to become overwhelmed by stress because of me.

It is slightly humorous to recall our wedding vows, when we agreed to two becoming one in marriage. This is fundamentally true, but in situations such as ours, we are one unit that functions better separately. Aubrey has his path to walk as a sufferer, and I have my own as his caregiver. We meet frequently at different points to uphold one another.

I’ve also realized that our focus determines our outcome. What we place first becomes our priority. My hope for Aubrey is that he focuses on living positively and lets go of situations he cannot change or control. I want him to know that he is loved and supported.

No matter what Aubrey’s outcome may be, I am determined these days to keep well. I subscribe to the following five tips recommended by Dr. Dexter.

1. Exercise regularly

Whether it’s a short run or a walk with my dogs, getting some form of exercise makes me a happier person. The activity clears my head and I can think better.

2. Get plenty of sleep

This may not be possible every night, but even a short nap during the day refreshes me. When I am rested, I am less grumpy and more patient with those around me.

3. Eat a Mediterranean diet

Aubrey and I follow a Mediterranean diet, which emphasizes plant-based foods, whole grains, and healthy fats, with the exception that we are also on a gluten-free plan. No matter what your diet looks like, eat healthily and be aware of what you feed your gut.

4. Stay mentally active

Find an activity you enjoy that stimulates your brain to find solutions. My go-to activity is crossword puzzles.

5. Remain socially involved

When we become engrossed in trying to cope with our current difficulties, it is very easy to overlook the social aspect of life. Our family and friends provide emotional support, and more often than not, I have had to reach out to them to get me through very tough times.

‎“Life is a shipwreck, but we must not forget to sing in the lifeboats.” – Peter Gay

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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.