Awe-Inspiring But Often Unrecognized by Alice Herb

Have you ever cared for a spouse, child, grandchild, or parent when she or he was seriously ill? If the answer is “yes,” then you’ll relate to what I have experienced and observed. Of course, the person who is the “patient” needs a lot of attention and help during the health crisis so that he can hopefully return to a normal life. But what about the primary caregiver? That is, the person who has provided the most care and comfort at the bedside? That person often goes unrecognized. She may be written about but rarely receives the attention, solace, or care she may need as well. I have become intimately familiar with the lack of empathy, sympathy, and appreciation for the caregiver. 

To this day I still feel the quivers in my back and my heart pumping wildly that I experienced when my first husband had a heart attack at age 40. He spent a month in the hospital, including a two-week stint in what was then a new care area, the intensive care unit (ICU). When he came home, our life changed forever. And for the next 16 months, I felt that I was walking on eggshells. I was thoroughly traumatized, afraid to leave the house, or to come home, afraid to answer the phone or the doorbell. If I tried to talk to anyone about my fears, whoever was with me didn’t want to hear about it. Unfortunately, my worst fear did happen. My husband ultimately died. That was the worst outcome imaginable. More often than not, however, the patient survives and all the effort was more than worth it. But the cost for the caregiver is very high.   

I write about this now because my much younger brother has suffered more than four months of severe medical issues that were a side effect of a new cancer treatment he’d been undergoing for the better part of a year. If he has been through hell, his wife, Betsy, has been there right along with him. I don’t want to diminish my brother’s experiences, including several emergency room visits, two neurosurgeries, heavy-duty inpatient physical therapy, and treatment for a massive infection requiring eight weeks of antibiotics. Betsy, a successful novelist and former magazine editor, was on call the entire time. While all family members and friends were attentive and visited, he wanted Betsy to be there all the time. If it was a frightening experience for all of us, it was even more so for her, who lived with it 24/7.  

What Betsy had to endure was extraordinary: Taking care of their personal business, attending to their dog, answering calls, emails, and texts from concerned family and friends –all was stressful. There was hardly time to eat or sleep (if she managed to fall asleep.) Yet despite getting to his bedside at 9:30 in the morning with whatever he wanted her to bring, it still wasn’t early enough for my brother. She often spent the entire day in the hospital or PT facility, which was another source of extreme stress. Talking to his physicians, nurses, and other medical staff and absorbing what they were saying while wanting to get back to his bedside, was nerve-wracking. There was no letup of the pressure. Finally taking him home had its own issues. A continuing fear of another emergency hung in the air. She had his schedule of medical and PT appointments, medications to give, had to learn how to do infusions, and then start doing them twice a day. I won’t even mention the myriad other tasks of preparing meals, scheduling guests, etc. 

I have detailed Betsy’s life as she was living it to put a spotlight on her and all the other unsung caregivers who have more or less a similar number of these assignments. And now with COVID-19, they have even more concerns. If my brother were to have another emergency, going to an emergency room would be unthinkable. The risk of being infected is another important worry. If not an emergency room, there’s always concern about what immediate care would be available. The anxiety can become even more intense.  

For the COVID-19 patient, if he stays at home, his caregiver has other concerns: Isolating the rest of the family and also taking precautions is essential. The constant hand washing and wiping down of whatever comes in contact with the patient adds to the already overburdened caregiver. If the patient is then hospitalized, it can be even more unnerving. The caregiver’s anguish of not being able to be at the bedside, not being able to gauge the severity of the loved one’s condition, and being unable to push away the specter of death can be even more overwhelming.

In Betsy’s case, I know that family and friends tried to help and did what they could, but what she needed- and what every caregiver needs- is someone whom a dear friend calls “a shoulder to lean on.” Someone who could help her address her often unspoken fears, anxieties, and the gravity of the situation. It’s an easy answer to suggest finding a therapist to whom she could let go and vent. But who, in the hectic pace of the “now,” has time to go to a pre-existing appointment for a 50-minute session or find one to whom you can blurt out the pain and anxiety exploding within? No, that “shoulder” is all-important. I tried to be that for Betsy and she maintains I was just that.    

From a personal and a professional perspective, a “shoulder’s” modus operandi is to help ease the choking, overwhelming feelings, and should include the following:

-Observe what is going on and the body language. Be there to witness the scene but be quiet until it is possible to be of help.

-Listen to the caregiver and encourage her/him to speak out.

-Be reassuring, yet realistic in response. Try to hear the information the physician/nurse is giving. For a patient and caregiver, it is almost impossible to take in immediately all the cold, factual information being imparted. Be there as the “scribe.”

-Bring REALITY back into the conversation. Caregivers are hoping and praying for the best outcome but the worst scenario is always dancing in front of their eyes.

-After the immediate crisis is over, be there for phone calls, walks in the park, coffee klatches, whatever, just to listen and acknowledge the difficulty of the situation, yet try to gently move back to point out the actual here and now.

-Stay the course for a long time because the trauma takes an eternity to subside. Yes, there is relief but the anxiety is slow to recede and the memories are there forever. 

-For those particularly difficult situations, urging professional counseling is important. But picking the time and opportunity to do that requires sensitivity and gentle persuasion. 

This is a very hard, emotional responsibility but that’s what it means to be a caring individual. That’s what it means to “step up to the plate” and to help, to recognize and acknowledge the superb job most caregivers do out of love, devotion, and responsibility.

Alice Herb is a retired attorney, journalist, and bioethics consultant. Having reached the age of 85+, she’s more than ready to share her experiences and opinions with agebuzz readers. Want to comment on something she’s said? She welcomes your feedback at [email protected].

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