Caregivers Rediscovering Their Identity

A friend’s wife suffered through a rough couple of years with cancer, and he served as her sole caregiver. Meeting up with him one day, I asked, “How are you doing?” He quickly replied, “Well, we’re doing okay. She just got home from the hospital, and seems to be having some better days. We have a long way to go, but our situation is better than it was.” He then shared test results his wife had, and gave a comprehensive update on her condition. After he paused for a moment, I pointedly said to him, “I asked how you are doing.” The ease of speech used to relay his wife’s circumstances instantly vanished.  As tears welled in his eyes, he managed to stammer, “Peter, I’m scared and worn out.”

Both responses my friend gave me reflect the condition of virtually every caregiver I know—including myself. We tend to lose our identity in the story of someone else. When a caregiver answers direct questions in third person singular (he, she, etc.) or first person plural (we, our, us), it’s a good indicator the loved one overshadows the caregiver’s identity. When asked about our own hearts, however, we find ourselves caught off guard, and usually struggle to share our feelings.

One of the caregiver landmines is the loss of identity.

It’s simply too easy to become lost as the person pushing the wheelchair.  We’re become the one standing in the hospital room corner, the one doing laundry or meals, etc. How can we talk about our own broken hearts or weariness when our loved ones have such drastic illnesses or challenges? Too many caregivers feel guilty for saying anything construed as complaining or wanting a break.  After all, the suffering loved one doesn’t get a break from pain/disease/ disability. But our injuries and wounds, whether physical or emotional, require attention—regardless of how they compare to others.

The loss of identity is the first step on a downward spiral for a caregiver.

If we don’t start paying attention to and taking care of ourselves, a strong resentment can quickly take hold. In a relatively short time, we can find ourselves tied in all kinds of emotional knots of guilt, and other negative feelings. Most don’t understand that caregivers can easily lose their identity in caring for that loved one.  In seemingly no time at all, it becomes difficult for caregivers to speak from their own hearts, pain, anger, frustration, and sadness. This loss of identity is the first step on a downward spiral for a caregiver.

Oddly, understanding this truth didn’t come from counseling or support groups (both of which I recommend), but rather I learned this one at the piano. Playing the piano since age five, I eventually earned a degree in music. In college I met Gracie who, although hurt from her terrible accident, is a wonderful singer. I mean, a no- kidding singer!  For years, we performed together, and I accompanied her on countless stages and in the studio. When Gracie’s health declined and she could no longer maintain a regular public schedule, my public performing appeared shelved, as well. Surprising me day at church, my pastor asked a special request, “Peter, would you play before services each Sunday morning as people gather and facilitate a more reverent atmosphere in the sanctuary?”

Finding The Melody

Agreeing to his invitation, I sat down to play hymns I’ve played since childhood, only to experience an unexpected issue.  Within just a few measures, I discovered my mind played a trick on me and I kept hearing Gracie’s voice. This led me to leave out the melody and I played only the accompaniment. The chords were nice, but they didn’t communicate the song. Quickly adjusting, I forced myself to play the melody.

We caregivers often find ourselves in this place: we lose the melody. Growing accustomed to someone else’s voice, we find ourselves playing a supporting role. The loss of our own voice, our melody—our identity, is a landmine with disastrous effect. That’s why I spend so much time on this issue for my fellow caregivers. We avoid this by reclaiming our identity and acknowledging our feelings out loud.  Using our own voices we can express, “I’m tired,” “I’m lonely,” “I’m scared,” “I’m angry,” or “I’m weary,” and seeking the help we need.

Caregivers can also reclaim healthy identities by cultivating trusted and appropriate relationships.  In those relationships, caregivers can safely express feelings and challenges with someone who understands their needs. Not limited to just friendships, a relationship with a trained mental health counselor can help sort through issues.

In addition, counselors can help connect to various respite and other type community services. Although each of these remain critical steps, they all start with a caregiver uttering: “I need help.” The next time a trusted friend asks, “How are you?” it may feel strange at first, but try and answer in first person singular. Appropriately sharing your own heartache and feelings is not self-centered; it is healthy—and healthy caregivers make better caregivers!

About Peter Rosenberger

Peter Rosenberger is the founder of Caregivers With Hope. For the past 30 years, radio host, author, speaker, accomplished pianist, and black-belt in Hapkido, Peter has personally traveled the path of the family caregiver. In the process, he has learned that a caregiver cannot only survive, but thrive in the midst of oftentimes grim circumstances. In an unparalleled journey with his wife Gracie, he has navigated a medical nightmare that has mushroomed to 78 operations, the amputation of both of Gracie’s legs, treatment by more than 75 doctors in 12 hospitals, 7 medical insurance companies, and $10 million in medical bills.

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