The smartest people I know in the field of cancer studies will tell you they don’t have all the answers. The wisest will admit they’re sometimes baffled about what to do in certain circumstances. But the one thing they do well is listen to cancer families. Regardless of whether it’s a cancer patient or a caregiver, a real expert knows that there is no formula for the perfect cancer care. Every patient is different, every family caregiver is different. You’re talking about the impact of human dynamics on a disease and the variables are many. That’s why it’s so important to understand that cancer is not a competitive sport. It’s not a case of “Rah, rah, sis-boom-bah!”
You don’t win the fight against cancer. You win the fight to live life out loud, in all its glory, and you do it by choosing to find quality of life in the everyday normal events that make up the moments of our lives. You do it by reaching deeper into what matters and embracing your true colors. Who are you as a person? What are you? Where are you in life and where do you want to be, even with all the challenges you face? What are the dreams that matter most to you and how can you make them happen? What are your goals and can you realistically meet them, or do they need tweaking and adjusting for you to be happy?
It might surprise you to learn that there are a number of self-proclaimed experts out there who are willing to tell you what you should do and how to do it. They have the “winning” playbook for cancer caregivers on how to achieve the best results. There’s only one trouble with that approach. It involves managing the caregiver, so that the caregiver manages the patient.
Think about that concept for a moment and you will begin to understand why there are a number of cancer patients who have a rather bleak view of cancer caregivers. The disconnect between those who need care and those who provide it can seem like an unfathomable distance. Why? What is it that makes the cancer patient feel cut off from the caregiver? Pressure to comply. Pressure to conform. Pressure to “get on board” and cooperate. Pressure to be cured. Pressure to defeat the Big C.
Cancer is not a competitive sport. You don’t win by intimidating the disease into submission. You don’t bully anyone into cooperation with the battle over cancer, any more than you cheer someone into success. “Rah, rah, sis-boom-bah! You scored!” Caregivers have an ever changing role, one that is fraught with pitfalls, valleys, steep climbs, and sometimes long, dark nights. That’s because cancer is a journey and you’re along for the ride. It’s not your body that has this foreign entity in it. It’s not your spirit, your mind, your heart that’s directly affected by the disease. When you set yourself up as coach and cheerleader for your loved one’s cancer battle, determined to press on, to persevere in the face of this disease, are you actually creating more harm than good, by treating it as a game to win? That’s a question every cancer caregiver has to ask himself or herself.
As the Practical Caregiver, I’ve spent a lot of time reaching out to various caregiver educators, advisers, and coaches because there are families struggling and my goal is to provide solid information that makes a difference. One thing stands out for me. Every time I have what should be a two-way conversation with a particular “expert” on cancer caregiving, I get a lecture. She throws facts and figures at me, citing this study or that study as the definitive answer to cancer’s problems. She provides me with a list of everything she knows about a particular facet of caregiving, all while “correcting” my errors in judgment, information, and anything else she deems faulty. And then she strokes me, telling me it’s wonderful that I’m doing this work. Sounds great, right?
Wrong. With her background in competitive sports, she’s constantly out to top me. By the time I’m done interacting with her, I feel like I’ve been going around in circles on the roller derby circuit with the Queen of the Rink Rats. She wants to dominate our professional relationship in order to validate her own credentials in the field of cancer caregiving. By promoting herself as having all the answers, she doesn’t need to listen. She just needs to win. And that winning involves convincing cancer caregivers to stop thinking for themselves and to do what she tells them to do. There is no give-and-take. There is no back-and-forth. There is no middle ground or equality. It’s her way or the highway. Move aside, because the champ is in the house!
In reality, she’s not more of an expert than I am. Having worked with a variety of people over forty years in hospitals, educational settings, and even in private homes, and dealing with different types of health challenges, I actually have some very significant experience in understanding the issues involved in family caregiving. As a trained educator, I also understand the techniques of behavior modification and management, because I’ve used them over the years. And with a background in psychology and real life experience in working with psychiatric patients in crisis, I’ve seen a lot of folks poke the bear and wonder why there wasn’t honey on the end of the paw when the bear struck back.
Bottom line? No one should ever tell you how to be the perfect caregiver. There is no formula for that. No one should ever tell you that if you do A, you will get B. But most of all, no one should ever talk at you, because real life involves give and take. That means you have to go back and forth until you understand your loved one’s perspective, your own, and then you find a way to connect, despite your differences in thinking styles, mental processing, and even emotional perspective on the situation. Real caregivers need to learn the process of managing a disease like cancer over time, with its various stages and progressions.
The one thing I have taken away from years of listening is the fact that emotional, and sometimes physical, isolation is a very real problem for a lot of cancer patients. Some of these people have wonderfully supportive families. Others do not. As a caregiver educator, I want to know what the disconnects are. Is it the perception of being misunderstood or the reality of being misunderstood?
When I talk with cancer caregivers, very often they actually do have a deep sense of what their loved ones are going through, and they, too, feel cut off from the relationship. But other caregivers sometimes have no clue about what’s going on. Why? They go at their cancer caregiving like it’s a competitive sport. They ignore the input of the person with cancer. That’s when many cancer patients tune out. They feel misunderstood because they are.
The one true thing I know about cancer caregiving is this. When you really listen to a cancer patient with your heart, your head, and your spirit, you look for the openings that will enable you to directly connect with your loved one, with what is really needed. Nothing, and I do mean nothing, will ever make a cancer patient feel better like being understood as a human being. Cancer survivors are not their disease and it should not define their every waking moment. Cancer is not the end all and be all of life. Wise cancer caregivers learn to navigate that rocky road by embracing the humanity, not the disease. Want to make a cancer patient feel better? Listen. Just shut up and listen. Speak from the heart. Don’t be afraid to say that you don’t have all the answers or that you honestly don’t know what to do. But be clear about this. It matters to you and you’re trying to do right by someone you love. That’s “the bridge over troubled waters” that really connects a cancer caregiver to a loved one with cancer. It means you’re there come what may.
For more help as a family caregiver, visit The Practical Caregiver Guides