I looked into the weary eyes of the man sitting across from me. Jerry and his wife had been battling her breast cancer disease for the last 14 years. For the past two years, I’d find him in the long hospital corridor, cup of coffee in hand. We’d stop and chat, and I’d encourage him to come to Montefiore’s Caregiver Support Center.
Jerry would tell me that when he was gone for too long, his wife would call him, wondering where he was and what was taking so long. His need to vent, to describe the current situation as the disease continued its unrelenting course was palpable. His body and eyes expressed fatigue, his will to prevail was equally palpable.
So here he was, finally in the Center. I was glad that he was indeed taking a break. I reemphasized how important it was for him to give himself this time, to talk to someone. To take a “time out” from his 12 hours of sitting at the hospital bedside of his wife of 50-plus years. He looked at me with his deep blue eyes and said, ” She doesn’t get a break.”
In my years leading the Center, I had spoken with countless caregivers and read dozens of books and articles on the subject of caregiving, but these words, and the look in his eyes, stopped me in my tracks.
It is easy to tell someone to take a break. It is something I truly believe is important and necessary. I know from many caregivers that they realize this themselves, and often after taking this so-called break, they feel reenergized — invigorated to go on in their role. Now my thoughts went in a new direction.
As much as we, the professionals, friends and family, often think we know what’s best for the primary caregiver, perhaps we should be listening to the caregiver a lot more closely.
How do we truly support the caregiver without intruding on territory that perhaps is not only his or her own domain, but where they are in fact the true expert? This is a philosophical quandary as well as a practical one.
Perhaps this gentleman had an awareness of the numbered days he has left with his beloved spouse, and does not want to spare a moment of that precious time. He had already relinquished all of his normal pleasurable activities (i.e. going to the park to feed the birds and squirrels, bowling with his friends, visiting his grandchildren) to sitting beside his wife — encouraging her to not give up the battle, to not give up hope. “I will give her a swift kick in the you know what, if she brings up the topic of giving up,” he told me.
I had thought about raising the topic of palliative care with Jerry, but did not. I had considered talking about goals of care, how his wife wanted to spend the remainder of her days, but I did not. I was listening on a level that required deep concentration. Instead of offering suggestions, I just kept listening to this devoted husband, knowing that this is what he needed the most.
I then questioned my expectation that this man should take the time to come to us to avail himself of our myriad services at the Caregiver Support Center. Perhaps well-intentioned suggestions were off the mark. ” She doesn’t get a break” signaled to me that I was to be present without the usual agenda.
After listening to the latest update on his wife’s condition, he told me wonderful stories about some of his accomplishments in life that he was most proud of, his eyes becoming brighter and more alive. I thought to myself, “If my chance meetings in the hallway or the radiation oncology unit are where we happen to meet, so be it.”
The power of being present and bearing witness is often undervalued. The urge to offer solutions, to fix things, when faced with an upsetting situation, is, of course, human nature. But health care teams, family, friends and co-workers can become more conscious, more receptive and responsive without resorting to platitudes or suggestions. The caregiver is then free to express themselves without feeling they should be doing this or that.
Often, the offering of one’s own values and ideas can actually shut down the caregiver’s ability to authentically share what it is that he or she is experiencing. Without any intention of being unkind or empathic, having an agenda of one’s own can result in the caregiver feeling even more alone in his or her situation.
But, how do we generalize this concept beyond the corridors of the hospital?
In our culture, most often, when people say, “How are you doing?” it is not a request for information, but merely a greeting. Kurt, another visitor of the Caregiver Support Center, was greeted as such by a co-worker in the elevator. He had been the sole caregiver of a very ill spouse for several years. He had a need to share, and instead of the usual non-descriptive “Hanging in there,” actually began to speak. When the elevator doors opened, his colleague said, “That’s too bad … have a good one …,” leaving the caregiver standing there, vulnerable and alone.
The day would have been so different if the other person countered with “I really want to hear more, can we have lunch today?” or even rode up the extra flight to continue listening. To hold on a few seconds longer, to be brave enough to continue with “I know you are going through a tough time, I really meant it when I asked how you are,” may well lead to meaningful contact and psychic relief. This can be a real game changer — the caregiver feeling less isolated and alone, a rewarding shift for both parties.
Moreover, the power of this kind of interchange does not have to take place in a designated spot — it can happen in the elevator, the grocery store, on the corner or during a phone call. I learned this through my interchange with Jerry. Although the door to the Caregiver Support Center is always open, the avenue for a powerful exchange by simply listening can take place anywhere.
*Names and identifying details have been changed to protect their confidentiality.
More from U.S. News
Easy Ways to Protect Your Aging Brain
7 Red Flags to Watch for When Choosing a Nursing Home
8 Ways to Remember Something Right Now
Caregiving: What Comes Next After ‘How Are You Doing?’ originally appeared on usnews.com
