It’s Okay To Laugh, Cry and Feel Uncertain
In 1990, Robert Harris and his wife and best friend, Cindy, had been married 10 years and had two boys, ages 2 and 5. One day, Cindy complained of pain in her knee. After going to an orthopedic surgeon expecting the usual sports related diagnosis, their world changed. Physicians discovered that she had Non-Hodgkin’s Lymphoma. Cindy went through chemotherapy and radiation. The family celebrated her “cure.”
For 16 years, Cindy was in remission. During that time, the family moved from Maryland to Orlando, and watched their children grow up. Then, in 2006, while taking a neighborhood walk together, Cindy’s knee “gave out.” Again Robert and Cindy went to orthopedic surgeons only to learn that she had a deadly form of cancer called Leiomyosarcoma.
“I very unexpectedly became an at-home caregiver,” Rob says. Today Cindy has “been cancer-free, but had [her] leg amputated and [is] dealing with painful inflammation and erratic blood counts. Chemo has affected [her] bone marrow. [and there is a ] Possibility of leukemia. [we’re] going thru testing now. Hoping for the best. We are grateful for every day we have and look at it positively.” Unable to use a prosthesis, Cindy is now wheel-chair enabled.
Robert Harris is best known online today as @Rob_Cares, a moniker he adopted after writing a book about caregiving and starting Rob_Cares LLC. “When I was told my wife had cancer, a 28% chance to survive and could die in 4 months, [with Leiomyosarcoma, Stage III] I felt completely lost and helpless. Just like when 9-11 hit us. We didn’t know what to do. I hated that feeling. As a result, I didn’t want anyone else to feel helpless, like I did. I also wanted them to read our story and know that it’s okay to love, laugh, cry and feel uncertain.”
Published in July 2012, Rob’s book, We’re In This Together: A Caregiver’s Story is a 5 star hit on Amazon. It is a #1 bestseller in the Physician and Patient Caregiver Category and continues to rank as the #4 top rated book in that category since it’s launch. Why’s this book so special?
It is written from the heart. “Most of us don’t practice medicine, yet, without warning, we are thrown into a medical environment and told to be a caregiver to our loved one. Without any experience, that is a daunting task. I wrote the book to help others become knowledgeable in their roles from the lessons I learned on my journey.”
The book chronicles both of Cindy’s cancer experiences, with 70 tips for caregivers interspersed with Cindy’s observations. As Rob says, “I knew nothing when I became a caregiver. I was too proud to ask others for help or advice. I was completely out of my element…in almost every regard. Whatever I learned was self-taught….”
Rob remembers a moment when he “dove into waters I had never encountered” at the drug store, “I had to learn about caring for a female in terms of their hygienic needs, etc. As a male, we are less attuned to beautifying ourselves and certainly not our mates. It was very uncomfortable for me when I had to shop for feminine hygiene products in the store for the first time. That was embarrassing. Thank goodness a woman approached me who could tell I seemed lost and didn’t know how to swim in that isle of the store. She asked for my list and located the products my wife was needing. Other than laughing at me (hysterically, I might add), she was very kind.”
From the mundane to the profound, Rob shares and provides guidance to legions of caregivers. And there truly are legions-the numbers are astounding. There are over 65 million American caregivers, a number that is 29% of the total population. These caregivers devote 20 hours a week caregiving. Almost a million and a half of those caregivers are children, between the age of 8 and 18. Forty percent of caregivers have been diagnosed as clinically depressed.
Rob does the job of many caregivers. “I attend all doctors appointments, quarterly check-ups, housekeeping, etc. Keep her spirits high. I’m helping her adjust to her new life at home and making every day a great day for her. We have fun and laugh.”
That’s an important part of caring for himself as well. “We love each day we’re together as a family. We created an acronym: ESD = Every Stinking Day live each day as if it’s our last,“ he says.
This strategy applies to everyone as well. “Everyone that interacted with us was in a positive frame of mind and happy as possible…. I communicated with “happy” family and friends only. If someone was negative or critical, they were removed from my inner circle until they changed their mood. That’s how we were able to remain upbeat during the most difficult of times. We had a friend that would always say, “You poor dear.” She was ousted from our group as a result.”
Staying upbeat has been his goal. “I wouldn’t allow myself to get stressed. Whatever was going to happen would happen. Being stressed was not going to change our set of circumstances….To unwind from the stress of the events we faced, we laughed a lot, joked with others and made sure. We would only watch happy shows and comedies/movies. I also went for runs for quiet time.”
Rob and Cindy use this strategy in their interactions with medical staff. “We played practical jokes on doctors, committed random acts of kindness and made friends with everyone.” In fact they have made it their job to know their health care providers. “The nurses, not the doctors, run the hospital. They are in charge. We treated everyone like family as soon as possible. I bought them snacks and drinks. We asked and learned about their families. When doctors came in, we did the same thing. We made them tell us about them. Nothing professional. Some were resistant at first, but eventually, they warmed up to us. We made friends with them. Most are our friends today.”
They made a deliberate effort to be connected. “Our goal was to be treated better than everyone else on the floor, especially when my wife needed them. “ Yet their idea of being positive and connected to others comes from having touched by death. “My wife passed away and came back to life in December 2006. The doctors were right there for us the entire time. Most people see angels and bright lights…She saw a shopping mall and Coach purses without price tags! Honest!” Rob states.
When asked how friends and family can help caregivers and patients, Rob is full of suggestions, “Communication is the key. Call and ask what the family needs. If they say they need nothing, bring them food from a restaurant, come visit or just call the caregiver to see how she/he is doing. Outside contact is missed when stuck at home or a hospital. It’s important to stay in touch with friends and family.”
Rob’s first book is a love story but it is also about cancer. “It puts cancer out in the open and all the emotional dilemmas that come with it. We’re human. My book speaks to that.”
Now, Rob is editing another book called, We’re In This Together: A Caregiver’s Guide which he hopes to have ready in the fall of 2013. This book will continue to describe his learning and also take a “psychosocial perspective.” Rob says, “As men, we don’t share our emotions. I held them back, as well. I learned as I went along that it was okay.” And he promises that like the first book, “you’ll be laughing and crying.”
Rob Harris’s Book is available at Barnes and Noble, at Amazon, We’re In This Together: A Caregiver’s Story and on Rob’s website. This post is a summary of a twitter chat #HCHLITSS with Rob conducted on May 30, 2013 and personal communication.