There are more than 40 million caregivers in the United States today. So, how is it that they can seem virtually invisible? How can people so essential to others lose their identities?
To see what I mean, the next time you see a caregiver, just ask this simple question: “How are you doing?”
Many people all too quickly deflect their actual state of mind with a perfunctory: “I’m fine, thanks.” But this condition becomes greatly exacerbated for family caregivers so used to caring for others that they simply forget about the existence of themselves. So, is it any wonder that others ‘forget’ about them too?
A conversation with a friend caring for his wife through cancer treatment clearly illustrated this point for me. I asked him, “How are you doing?” He quickly replied, “Well, we’re doing okay. My wife 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 went further, discussing his wife’s recent test results and a lengthy update on her condition. When he finally paused, I pointedly stated, “I asked how you are doing.”
That question was harder for him. It almost seemed as if he was trying to respond in an unknown language. Big tears filled his eyes and he eventually stammered, “I’m scared and worn out.”
Caregivers tend to lose themselves in someone else’s story, which is why “How are you doing” is likely to be followed by “He, She or We…” while “I” remains conspicuously absent.
Oddly, my understanding of this truth — and how it reflects my own experience — was revealed at the piano. A pianist since childhood, I eventually earned a degree in music. In college I met my wife who is a no-kidding singer! For years, we performed together, and I accompanied her on countless stages and in the studio. When her health declined and she could no longer maintain a regular public schedule, my performing also stopped — until one day when my pastor made a special request. “Peter, would you play before services each Sunday morning as people gather? I think it would help facilitate a more reverent atmosphere in the sanctuary.”
Accepting his invitation, I performed hymns I’ve played since childhood. Within a few measures, however, I often discovered my mind playing a trick on me. I kept hearing my wife’s voice in my head, causing me to leave out the melody and only play the accompaniment. While playing nice chords and flourishes, my music didn’t communicate the song. Quickly adjusting, I would force myself to play the melody.
All too many caregivers lose their melodies. Growing accustomed to someone else’s voice, we find ourselves playing back up.
The loss of our melody can have disastrous consequences for caregivers. In addition to fostering depression, resentment, and sometimes rage, the loss of identity inhibits caregivers from addressing their own health concerns or seeking help for themselves.
We’re taught in life that too much emphasis on ‘me, myself and I’ is arrogant. But for caregivers, the word “I” often is the key to recovering our “melodies.” This recovery begins when, however timidly, caregivers admit to their physician, counselor, or a trusted friend the brutally honest status of their own hearts. “I am hurt,” “I am tired,” or “I am afraid.” The beginning of the road that leads caregivers to rediscover their melodies often starts with uttering the words: “I need help.”
So if you are a friend to a caregiver, keep in mind: “How are you doing?” may be society’s imperfect routine greeting, but when asking, be sure to pair your question with sincerity and patience.
And if you are a caregiver, the next time a friend earnestly asks about you, try to answer in first person singular. Try playing or singing your melody.
Appropriately sharing your own heartache and feelings is not self-centered; it is healthy—and healthy caregivers make better caregivers!
Peter Rosenberger hosts a radio program for family caregivers broadcast weekly on more than 200 stations. He has served as a caregiver for his wife Gracie, who has lived with severe disabilities for more than 30 years. He is the author of several books including Hope for the Caregiver @hope4caregiver