Caring for Yourself as a Caregiver

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by Jaime Christmas |

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The melodic chirping of birds outside the window is louder this morning. This is because Auckland, the city in New Zealand where I live with my husband and our four children, returned to Alert Level 4, meaning lockdown, on Aug. 17 at 11:59 p.m.

The coronavirus delta variant has penetrated our country’s defenses and is now spreading among our Kiwi community. Few vehicles are on the streets, as everyone has been advised to stay home except for essential personal movement. Hence, the birds are taking center stage, and I am thankful to hear them.

As a caregiver to my husband, Aubrey, who was diagnosed with hereditary ATTR amyloidosis in 2013, and the leader of an amyloidosis patient association, my days can become quite hectic. I almost always work from home, so I have to be mindful about dividing my schedule between work and family. Add writing into the mix, and I have a pretty balanced life. I wouldn’t have it any other way.

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Providing care for a family member isn’t easy. Depending on the illness and its severity, caregiving can become strenuous, stressful, and emotionally exhausting. Many have no formal training, and instead learn “on the job.” External support is often required to adequately prepare for this role, which can be demanding, complicated, and long-lasting. The personal strain is real, and the impact can cause negative psychological effects if one isn’t careful.

I have written about my personal journey as a caregiver, and I always try to highlight the importance of self-care in the role I shoulder. My advice is always for caregivers to take time out and tend to themselves. We are no good to our ill loved ones if we are unwell physically, but especially mentally and emotionally.

I also know that it’s not always easy to hone in on our own needs. The extent of caregiving obligations can vary, depending on one’s family dynamic and cultural background. Some may believe that taking a break from caregiving is selfish and irresponsible.

If you are a caregiver, I want you to know that there is no shame in respite. Caring for our loved ones is rewarding, and things aren’t always headed downhill. Nevertheless, caregiving can have negative effects if we aren’t mindful. We experience stress, fatigue, and frustration. We are exhausted, but we need to press on. We also may go through bouts of feeling helpless and isolated. Caregiver burnout is real and can be harmful.

You are not selfish if you take a break. You are not greedy if you do something for yourself. When you look in the mirror, tell yourself that you matter. Speak life. You are also your own caregiver. Find a space to do something you can enjoy and be proud of. You are important, too.

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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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