Coping with Caregiver Worry, By Adrienne Gruberg of the Caregiver’s Survival Network
Experience has shown me that one quality many caregivers share is concern—to the point of constant worry—about the person they are caring for. In my case, persons, because I was caring for my husband Steve, and his 92 year-old mother Sylvia—both cancer patients, living under one roof.
I became their mind reader, making certain anything they might need or want was on hand. But I worried; was I doing enough? Was I doing it right? Was I making any mistakes? Mother and son were so desperately worried about each other, I worried that I had to find a way to curb this behavior; that it wasn’t good for anyone concerned.
In her own home, Sylvia did everything for herself—but once she was under our roof, my husband worried about her constantly, insisting I monitor her every move to keep her from lifting a finger. Worried about his peace of mind, I sat outside the bathroom when she showered. I’d check on her during the night. She handled chemo better than anyone I know who’s been through it, but that didn’t stop her son from worrying. But I was her caregiver. I had the situation under control. She was comfortable, happy and catered to. As long as we watched “Jeopardy” together every night, life was good.
On the other hand, Syl didn’t stop worrying about her son and the extent of their mutual concern for each other was driving me crazy. I became over-vigilant and worried about everything from making it to doctor’s appointments on time (which was ridiculous in retrospect because we always had to wait once we got there) to having their favorite ice cream in the house, to making runs to the drug store for their prescriptions but filling my basket with things “we might need” as well. I continued to worry that Steve worried too much and that he should be focused on his getting better. The time finally came when they had to be separated.
In 2009, Steve needed a third lung surgery and I knew I couldn’t cope with them both under one roof. I could manage everything but her fear, and since her two rounds of chemo were completed, she went to live at home again. Syl was an amazing lady but—despite her denials to the contrary—had grown increasingly deaf and we worried for her safety. She couldn’t be alone 24/7. We found a lovely and competent companion for her, who’d come in from 10:00 a.m.—shower time, until 6:00 p.m.—dinner time.
With Sylvia back at home and well cared for, I could focus my worry on Steve. We went from our home in New York City to Boston for his operation. Steve’s brother came in from Houston to be with us. I online pokies thought I’d turned my lack of control over to a higher power, but I was worried. I worried about everything that was out of my control—the surgery; how long it was taking; how would he weather it; why was he in surgical intensive care? It was Steve’s nature to always worry, so I stayed with him in a private room during his hospitalizations—which ended up being a very good thing—because the one thing I hadn’t worried about was me, and I ended up in the emergency room and was hospitalized for six days. I had literally worried so much it made me sick to my stomach.
If you had asked me then if I was worried about anything, I would have denied it. I would have said I was concerned, but not to the point of losing sleep. I was a realist and knew from the time Steve was diagnosed with cancer exactly what that meant. Yet there were a million little things that nagged at me, or that I was anxious about, or disturbed over; all of these are just synonyms for worry. I now see that being in denial about being worried made me think I was strong enough to deal with everything that was thrown at me. This twisted logic made it possible for me to function on a daily basis. Worry is a much smaller word than fear and I could cope with the things I was worried about; they were somehow manageable. It’s the things I feared all along that have challenged me—and then I realized that both worry and fear are a waste of time; and that once I relinquished my need for control, I found I worried less and had the strength and courage to live from day to day and flourish in the now.
About the Author: Adrienne Gruberg first conceived of a social network for caregivers while taking care of her husband and mother-in-law. She was able to survive this role by connecting with other caregivers online, and The Caregiver’s Survival Network was born. Adrienne is the President and Founder of the first online social space for family and professional caregivers to share their experience, wisdom and hope with their peers.