Caregiver Help

I have been doing a lot more peer visits during the past few weeks. Although I always feel emotionally drained afterward, I understand the fear that often accompanies losing a limb, and I am happy to help somebody else on their journey. I've often thought that my adjustment would have been easier had I had a mentor.

With each visit I am beginning to fully understand how much an amputation impacts the entire family, not just the patient. When I was preparing for my own surgery, my thoughts were consumed with my own fears, anxieties, and plans for the future. I wasn't able to look beyond myself to see how my family and friends were coping with the loss of my leg. Now that I'm in a different role, I am able to see the impact from a different perspective, and I am astounded with how profoundly a family can be affected.

I find that I am investing nearly as much time with the spouses, parents, siblings, and children as I am with the new amputee. Many times I am followed from the hospital room and into the elevator by a family member (or two) after my visit with a patient where I am peppered with additional questions. It is evident that the loved ones of new amputees are often struggling and need support. However, the needs of the new amputee often trump the needs of the caregiver, leaving the family searching for ways to help, cope, and adapt to the changes.

Although it's been nearly 9 years since my amputation, Scott avoids talking about the first few weeks after my surgery. It isn't a memory that makes him comfortable and he would rather not revisit that time. Finally, this past weekend after a particularly draining peer visit, we had one of our first conversations about his adjustment.

Only after our chat did I realize how profoundly Scott was affected. Obviously our lives changed and I am physically different. However, I never realized how he was impacted on an emotional level.

Scott felt like he couldn't grieve, at least not in front of me, for the loss of my foot. He had to remain strong, steadfast in his support and unwavering in his resolve that I was going to be okay. I learned that he worried and fretted about my future but he felt that he had to put on a positive face at all times. It's ironic because I was trying to be brave for him. I worried that had he known how lost I felt, he would have a more difficult time adjusting.

We were trying to protect each other but, in essence, we were isolating ourselves. We were both feeling the same fears and grieving a loss, yet our desire to "make everything okay" kept us from communicating those fears.

I've been amazed how simply asking how they were coping and validating their feelings can open up a flood of emotions. Asking the simple question of "How are you dealing with this?" can make a world of difference for a loving family member who is struggling to help and to adjust. I have been trying to reach out to the individual in the caregiver role more often because I am beginning to realize how much it means.