Category: caregiver education

I had a very busy week. I’m in the process of updating website and blogs, streamlining material so that it makes more sense, and at the same time, editing some caregiver videos. In the midst of all this, I got a flurry of emails from a young woman who decided to question my credentials as a caregiver blogger.

There I was, up to my eyeballs in work, and she wanted to know why I didn’t have an “about” section on my cancer blog. The nerve! How dare I not provide information on my background!

Actually, I did. It was buried down at the bottom of the blog because over time I had loaded so much information onto the website, it got shoved to the bottom of the pile. Part of why I was weeding and culling this week.

After she pointed out the fact that she STILL didn’t know ABOUT me in subsequent emails, I realized what she was looking for wasn’t my credentials. It was my pedigree. Was I even remotely her equal? She didn’t seem to think so. She seemed to think I was some interloper who just dropped off the banana boat after smuggling myself into the country. And that brings me to explain what REAL credentials are, especially when it comes to caregiving.

I actually have a degree in education from a respectable university. I actually graduated with honors, with a major in education and minors in psychology and art. I actually did graduate work in psychology, information science, and media. And yes, I should have gotten the masters degree. Lord knows I have the credits at the three universities where I studied at the graduate level. But to me, what I was getting out of those classes was more important than the piece of paper. I was busy painting and writing. Maybe that’s why I wasn’t terribly concerned about answering the demand for information on my pedigree.

The truth is I am at heart an educator with a passion for learning. How does the brain compartmentalize and comprehend information? How do you make the connections between a terrible disease and the promise that there are ways to thrive while managing cancer? That’s what a good teacher is supposed to do, help students move from Point A to Point B to Point C, building on lessons that strengthen a student’s own skills.

As an educator, I know people have different ways of absorbing information. Intuitive thinkers are very different from concrete thinkers. Some people are emotionally based, others are not. How you present information matters. Propagandists know this. Political spin doctors know this. Linguists can tell you that it’s a mental process that can be manipulated. But I can tell you, as someone who has witnessed cancer’s devastating effects, that perception is everything when it comes to cancer treatment. What is the brain telling you about cancer? More importantly, how do I share information with you that helps to alleviate some of the fear and move you in a more positive, productive, and successful direction? There’s a reason we want to keep hope alive. Hope feeds the soul.

I did my first teaching practicum in a prestigious city hospital, in the pediatrics department. I loved working with hospitalized children because it was a great challenge. I was lucky enough to have professors who believed that if a child failed in school, it was really my failure to reach into that child and tap his or her strengths to build up the weaknesses. That’s a “whole person” philosophy. It put the responsibility on me to connect with each and every child and bring out the best in him or her. That’s how you build the human bridge, especially in health care.

Back then, cancer deaths were more prevalent, especially with childhood leukemia. I worked with a range of children with different types of cancers, but I also worked with children who had other medical issues. Why is that important? When you’re trying to figure out ways to help cancer families, it helps to know what is normal behavior and what is abnormal behavior. Hospitalized children can go through a myriad of emotions, and the causes and triggers can be complex. Knowing how children think and feel in the stages they pass through can be critical in knowing how to connect with them with what ails them. There’s a difference between a four-year-old’s nightmares and a ten-year-old’s nightmares.

I also worked in a psychiatric admissions hospital, with adults who were unmedicated. If you’ve ever seen someone out of control, you know it can be scary. Again, I got to see a wide range of behaviors in adults, ranging from a sweet, gentle man who battled depression to the non-communicative man who murdered his mother during a fit. I learned that how you approach a patient can make a huge difference, and that by paying attention to visual and verbal clues, it’s possible to avoid an unnecessary confrontation and get past the wall, so that the real issue can be addressed. Being able to think on your feet is a very important skill. It came in handy on more than one occasion, especially the night I had to talk a woman out of committing suicide. That’s a life-and-death situation that forces you to reach deep into another soul and say, “Your life has value. This pain you feel right here, right now, will pass. You have so many reasons to live past this moment in time. Look beyond it and see all the good things you have to get you through this terrible experience.” Sometimes people in crisis are so aware of their pain, that’s all they can see. It looms above them like a big, black monster and intimidates them. All that self-doubt, that self-hatred is really an inability of the person to see the big picture. None of us is ever perfect. We don’t live perfect lives. We don’t do perfect things. But almost everyone of us has skills and strengths. When we lose sight of ourselves as a whole, we can become too focused on one aspect of our lives, and that skews the balance, forcing us into despair. Cancer can do that to the best of us, the strongest of us.

I also worked with juvenile delinquents, some of whom just had poor impulse control and others who were actually menaces to society. There’s a difference between a kid who can’t stop himself from reacting and a kid who spends hours engaged in fantasies about doing heinous things to people. It was a good lesson in understanding that it’s more than environment that makes a kid go bad. When we allow kids to do their own thing, it’s often a recipe for disaster if they’re drawn to darkness. How do you point someone in a more positive, more productive direction, away from things that cause harm and onto things that makes us better people?

Over the years, I’ve been there for people who have experienced physical trauma and emotional anguish. Whether they were victims of crime or victims of fate, it didn’t really matter. The process was the same. How do I help you to get back to being who you are, but as a better, stronger you? I took those lessons into the caregiver equation. Caregiving isn’t about making someone dependent on you. It isn’t about focusing on what a person can’t do alone. It’s about finding ways to compensate for what’s not there, in order to make the person feel as whole as possible.

The damage from a traumatic event doesn’t go away overnight. There is no magic wand to whisk away the pain. Many cancer patients are victims of trauma, through the battery of cancer treatments, be it radiation, surgery, and/or chemotherapy. So many times, the side effects are tougher than the actual disease. Helping someone overcome the debilitating effects of that trauma is sometimes the biggest battle of all, because we humans are, by nature, emotional creatures. We feel. But we also think. Combining logic, comfort, and compassion is a vital part of helping someone face the aftermath of trauma, but understanding how that trauma has changed someone’s life is the real key. Trauma, facing it as a victim of a horrible crime or a horrible disease, has the same result if it’s allowed to take its course unchecked. It will stop a person in mid-step. It will steal the confidence, the courage, and even the character from a person. That’s why it’s so important to empower cancer patients, not with mythic belief that they can overcome their disease, but with the real belief that this disease can be managed. It’s all about quality of life.

I’ve had my own experiences in overcoming obstacles. Many years ago, my car was sent into a telephone pole by a distraught young woman who had just broken up with her boyfriend. It took a year of physical therapy for me to get back to a life without constant pain. Just as I was finished with all that hard work, I was a passenger in another car that was rear-ended. It was back to physical therapy all over again. That experience gave me a glimpse of the frustration that comes from finding out that your cancer is no longer in remission and you’re back to square one. It’s maddening to do all that hard work for what appears to be naught.

Mental health is as much a component of cancer care as is the actual physical treatment of the disease. You can throw the best medicine at a tumor, but if the patient’s perception is that it’s a waste of time, it’s not likely the patient will thrive over time. Why? It’s all about the terror of having cancer. That eats away at you. It stops you from taking positive action.

Art has always been my first love. How does this fit into being a cancer caregiver educator? As an artist, I studied perspective. From the age of nine, I practiced, practiced, practiced. A lot of people think that artists are flakes (“Who ARE you?”), but the truth is that most artists throughout history, with the exception of the last few generations, approached art with much more respect for science and mathematics. There was an understanding that perspective made all the difference in what information the eye took in. If you take an apple and you place it on a table, that is only one view. Every time you take a step to the right or the left, the apple will change. Why? There will be more or less light. There will be a different background as you move around the room. How does that fit in with cancer care? The more complete your understanding of the cancer picture, the better able you are to find tools to assist you in battling the disease or helping someone you love to battle it. Sometimes people get caught up in the darkness. They see only the despair of having cancer. It has tremendous power to make even the toughest human being feel small and helpless. But that’s because we sometimes forget to look for the light. Cancer isn’t a disease that happens overnight. No one ever has a tumor that just pops into place. Cancer is a disease that evolves over time. Understanding that and putting the disease into perspective can help tamp down that terror for someone battling the disease. Rome wasn’t built in a day, so it will take more than a day to tear it down and rebuild. Cancer isn’t a sprinting event. It’s a marathon.

So, who am I? I am someone who started out with a belief, as that young college student, that I would somehow, some way, take what I learned as an educator and make sense of it for the everyday person. That’s what I was in the middle of doing this week when the young woman repeatedly asked me “Who ARE you?” I believe that I have the tools, the skills, the experience, and the wisdom to make a difference in the lives of family caregivers, no matter what the issue that creates the need in a loved one to have that support. I know the value of teamwork, of attitude, of compassion, and comfort, but also in drawing out the strengths of a person who doubts and shoring up those weaknesses.

I know that uncertainty and dread are greater threats to a cancer patient than any tumor. It’s not about running away from the terror that gives quality of life to someone with the disease. It’s about putting the focus on the positives. It’s the equivalent of turning on a light when a child believes there is a monster under the bed. Cancer patients can feel like that sometimes, can’t they? There’s so much about cancer we still don’t know, still don’t see, still don’t understand, and that monster is lurking in the dark recesses of our minds, whether we are the patient or the caregiver. That’s why it’s so critical to know what else is in that room. Cancer patients who feel alone will often give themselves up to that terror. Cancer patients with a support team of family, friends, and good health care providers will survive longer and better. Why? Because they can avoid some of the stress that comes from having a serious disease like cancer.

In the end, stress is one of the most destructive components of any disease, and stress management is critical for cancer patients and for caregivers. Stress affects the heart, the nervous system, and even your mindset. It will kill you faster than any disease, because it robs you of the ability to enjoy your life. And what is life if you’re miserable? My goal, as a caregiver educator, is to inspire other caregivers to find what works for them and for their loved ones, to build on their skills, to expand their understanding of patient psychology, to treat the whole person and the whole life. We are always bigger than any disease, any trauma, any obstacle. We don’t always see that. We sometimes forget it and lose our way. Our lives are often changed by one tiny moment in time, when something terrible happens and we surrender to our fear. Rebuilding our lives takes time, energy, and focus. It takes support from those who love us and care for us. By making the effort to treat the whole person, we can overcome the disastrous parts of our lives and get back to being who we are, living the lives we were meant to live before terrible things happened to us.

You might think that the young woman who asked, “Who ARE you?” earned my scorn, but she actually did me a huge favor in questioning my pedigree. These are my credentials. This is who I am. This is what I believe. This is my experience. These are my skills. My work speaks volumes about what I know about life. I didn’t become the person I am by hiding behind my pedigree. I am who I am because I took the time to use my education, my passion, and my desire to expand my understanding of how we humans are impacted by disease and disaster. It’s okay if she doesn’t think me worthy. What matters is that out there, every once in a while, another caregiver catches on and takes what I offer, makes it work, and improves the life of a loved one. To me, that’s the best validation for what I do.