I guess my career as a caregiver began when my grandmother taught me how to make chicken soup, early in my teens.
I’d already shown myself to have a fearless bedside manner, spending days on end in the hospital when my dad was diagnosed as having lost half his blood from a bleeding ulcer. Hospitals didn’t bother me. I was never the least bit squeamish.
This served me well in my first marriage when I assisted my husband in lab work and later on, when he worked for the kidney transplant program at the New York Blood Center. There were weekends I’d have a kidney on a dialysis machine on my dining room table while we tracked down a recipient. This was long before sophisticated, computerized donor programs were able to search databanks—it was all done manually on paper and the telephone.
Growing up, I saw widowed grandmothers customarily move in with daughters or daughters-in-law, who would then be charged with their care for the rest of their lives. In my family, that duty fell to my mother who relied on me to be there whenever I was needed. There were no “senior residences” or “assisted living facilities” then. There were “HOMES,” and you were a very bad person if you put your parent in a home. Oh how things have changed.
Eventually the time came when it was my turn to take care of my parents.
It was a long-distance caregiving situation and I racked up a lot of miles flying back and forth to Ft. Lauderdale. My father was my mother’s caregiver (even though he was fighting cancer) and he conformed to the statistic that caregivers predecease their spouses. I was there for him too, but the real job was with my mom after he’d passed. She had COPD along with other age appropriate conditions, but she was a true narcissist and an impossible patient. I learned to run interference between her and the women the agency sent to care for her. No one was ever good enough; no one ever liked her. I became a peacekeeper. I visited more often than I really had to because her need to be the center of attention had her in and out of emergency rooms, which meant booking the next flight out of New York to be with her. Her habit was to get sick on holidays, so she didn’t have to spend them alone. Sadly, we had a tough relationship to begin with and there was no pleasing her.
My sister-in-law gave me some very sound advice. “Treat her like she’s a mental patient. Just agree with everything she says. She won’t be able to confront you then.” It worked. I detached with love, as they say, and using this “yessing” technique made it possible for me to deal with her. I highly recommend it. She died in 2004 on February 29—just to be contrary.
My husband Steve was diagnosed with stage 1A lung cancer in March of 2005, but before he could undergo any treatments for it, he needed to recover from what had originally sent him to the hospital. He had peritonitis. They performed surgery, sent him to the surgical ICU and induced a coma. He was out cold for six days. His doctor told me “He’s circling the drain. Go home and take some Ambien. You’ll need your sleep. If he makes it through the weekend we’re home free.” Steve was basically on life support, and I watched him heal day in and day out every single day. I had a need to be there, by his side.
During this hospitalization, I learned how important it was to develop good relationships with the nurses and PA’s.
They were always there for me and gave Steve exceptional care. They’d send me home long after regular visiting hours were over and knew that I’d call the nurse’s station for an update every night before I turned out the light.
Steve came home with a temporary colostomy, and the first surgery for his cancer would be performed after he had healed enough to reverse the colostomy. I knew how capable I was and every inch of me knew I would be the best caregiver he could ever want or have. I did all the dressing changes on every surgery he ever had. I designed charts for his medications. I researched surgeons and treatment alternatives. I made call after call for any information that might be helpful.
A year and a half later, in 2007, his mother, who was 89 at the time, came to live with us because she’d been diagnosed with lymphoma. I now had two cancer patients on my hands. After about a year of this, I was fried though you wouldn’t know it to look at me.
My outer appearance was a shell, and it meant that no one ever asked me how I was doing.
“You look none the worse for wear,” and that was it. But I knew it was time for me to find some support.
My life was centered around Steve and his mom, but I had a plan brewing in my head and heart, and I kept refining the dream and it kept me going. I would make sure there would be life for me after caregiving and that I would create something worthwhile for an underserved and underappreciated population.
Steve’s mom passed away in June of 2010, and less than a year later I lost Steve. After almost a year of grieving, it was time to proceed with my vision which became The Caregiver Space.
I imagined a site where caregivers were our sole concern.
Yes, they clearly had problems that concerned their loved ones, but I didn’t want that to be our focus. A resource library would be created to link caregivers to sites
that specialized in patient care. I was working on organizing my life after Steve with a young woman, Allie, who liked the site idea and she took it and ran with it. We built it beginning April 2012.
We launched the site in December—in just a few months, the site was a reality. We’ve been refining it ever since. It’s quite amazing.
My vision was quite detailed and we’re still adding new elements to it including videos on health and fitness, stress coping strategies, relaxation techniques, escape videos, book clubs and much more which would eventually become a fully functional Caregiver TV Network. We’re well on our way. It’s all very exciting.
But, my life has changed. I miss my husband terribly—today would have been our eighth anniversary. We lived together for a total of thirty-two years, but only six as man and wife. I like to imagine him sitting on my shoulder, pleased as punch that I’ve made this all happen—not alone—but it is a real manifestation of the love and devotion that went into my caregiving experience.