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Posted on 24. October 2013

Role Reversal: My Journey from Caregiver to Patient

By Paulina Brooks

My life was defined by my roles as a wife and mother. Caregiving was what I knew. Then, in 2008, I was diagnosed with mixed connective tissue disease, and everything changed.

For years, I had been immersed in the very emotional experience of caring for the needs of my family. When warning signs of a possible illness surfaced, I resented the notion that they could be the result of neglecting my own well-being. Because of the guilt I felt for even considering that possibility, I continued to ignore signs of physical stress until my immune system went awry; it attacked nerves, muscles and internal organs. Severe chronic pain set in.

By the time I realized I had lost sight of my own health, my body was shutting down. I began replaying everything I did (or neglected to do), starting with the day I became a mom. My tiny 4-pound son was born with Spina Bifida and Hydrocephalus, conditions that caused paralysis, brain damage and developmental delays. The uncertain future proved too much for his father, and a divorce soon followed. Still, my spirits remained high, and I discovered an inner strength I didn’t know I had.

The years of frequent surgeries that made hospitals our home away from home turned into calm years of stability and happiness like no other when I met my true love and eventually re-married. A loving and caring man, my husband had devoted his life to serving our country in both the Army’s elite Special Forces units and subsequently as a naval officer. After the many combat tours he completed before we met, I naively thought that battlefields were part of his past.

In 2003, our country’s invasion of Iraq threatened our existence to its very core, and friends and family simply did not know what to say, much less how to help. Multiple deployments forced me to revert back to a place where I had no other choice but to press forward alone. After my husband’s final homecoming, it became evident that we needed to deal with the aftermath of war, namely post-traumatic stress disorder. To make matters worse, my husband’s invisible wounds manifested physically in the form of three heart attacks. Healing required years of mind-body recovery that were private in nature and at times quite lonely. We never gave up, and we eventually found light at the end of what had been a very dark tunnel.

After so many years of struggle, my diagnosis felt like a cruel joke. I wanted to give up, and in many ways, I did. Feelings of despair, anger and resentment overwhelmed me. I blamed the war, the elusive family members that didn’t help and the friends that disappeared. If they had stepped in when I was at the end of my rope, would I have become so severely ill? Admittedly, that question still resurfaces even after years of co-existing with a chronic illness. Frustration rises when pain leaves me bedridden and I mourn for my former life.

Sometimes I get sad remembering when my husband and son needed long periods of rest, and the healthy version of me mistakenly assumed they were not making an effort to rejoin the world. Being on the receiving end of day-to-day care, however, has enlightened me in many ways. Now, I can now honestly say to them “I understand,” because I have indeed walked a mile in their shoes. I no longer feel the need to control everything; today, everyone contributes and tasks that need attention must take into account our respective limitations ... laundry can wait. I learned that the totality of caregiving does not need to be an overwhelming experience, but rather the sum of lots of individual contributions and honest communication. Above all, I have a newfound appreciation for quiet times, and I treasure the healing environment that is our home.

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Comments (2) -

Linda Thornrose
9:57 AM on Friday, October 25, 2013

Pauline, God bless you!!  God surely gave you such strength to endure all that you have over the years.  I have a friend at church who raise a son born with spina bifida for 36 years, so inspirational!  Both she and her wonderful son.  She was left to raise him alone, remarried only to have her husband leave when her son decided he was ready to let go.  You had even more!  What an inspirational story, but one of constant struggle with lots of grace!  Thank you for sharing your story.  I pray things get a bit easier for you...at least some sort of routine (that is what I hope for). you deserve a nice break and I hope you get one soon, if only for a day at a time!

Gail
9:28 PM on Friday, October 25, 2013

Many people let their caregiving define their lives and end up ill. I hope you will not just wait for friends and relatives to offer. Instead, ask help. Have a list of things that they can do to help. Join a support group and, if possible, seek counseling. It helped me and it can help you. Please do not try to take on the world. At some point you need to come first. Try meditating, even if just for 20 minutes a day. Sneak away for a warm, relaxing bath, read a book that will take you away from your own life, or listen to soothing music. You cannot be all things to all people. Please take good care of yourself too! We care.

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