Author: sarambarton

When cancer comes knocking at the door of a loved one, “normal” life changes. You sometimes may find yourself living with a stranger, instead of a spouse, parent, sibling, or best friend. The transformation can be terrifying, especially for baffled caregivers who don’t know how to react.

If you’ve ever worked on a pediatrics ward with kids, you’ve had the experience of knowing that “normal life” goes right out the window. Bedtimes are disrupted, dinner time is whenever the food service arrives, and family meals? Unless you take the whole gang to the cafeteria, you’re out of luck.

That wild ride in the hospital very often translates into serious behavioral issues when parents don’t have a grip on what’s happening and how to handle it. As an educator who worked with hospitalized children, I often saw family dynamics spiral out of control when the illness continued over time. The temporary suspension of schedules and activities somehow becomes permanent, and that changes not only the family dynamics, but the family structure. If you’re going back and forth to the hospital a lot, you sometimes surrender control of your child to the pediatric workers because you’re too exhausted to think, let alone discipline your sick child. You sometimes stop being a parent who teaches a child to be responsible and reliable, because you want to be taken care of, too. You’re terrified for your child and yourself. Wise health care workers intervene in those cases and help to empower parents to continue that important role. Families need to continue to be families, even during a health crisis, and that requires they regroup, refocus, and rework the kinks in the family dynamics.

Being in the hospital for any length of time is a frustrating experience for a child. You miss your bedroom, your possessions, your safe environment. The sights, sounds, smells, and tastes of hospital life can be scary. From the constant disruptions for treatments, vital signs, and equipment adjustments to the nasty medications to the painful changing of bandages, it’s not a fun time. Imagine, if you will, that you are a parent. It’s your job to protect your child from harm. The hospital setting can feel dangerous, especially when your child is crying because he or she got a treatment. If you love your child and you really want to make it more bearable, what do you do? Take your child home and let him or her suffer the disease’s effects? Or do you find ways to help your child understand that this treatment, which is so debilitating, is necessary? Having that strong parent-child relationship is critical. You need your child to trust you to have his or her best interests at heart. That takes some serious work and some serious love.

What does this have to do with adults who need cancer caregivers? In many ways, the triggers that cause children to become oppositional often do the same for adults. By understanding some of the problems faced in the pediatric hospital setting, you will improve your own ability to understand how adults perceive their care, and you will be able to adjust your caregiving to better reflect the needs of your adult loved one.

Freedom is a very important facet of human development. We need to feel that we have the right to choose our own destinies, without hindrance or disruption. We need to feel that our voices are heard and our opinions matter. We need to feel free to pursue happiness. What are legitimate reasons why others might step in and interfere with our actions? If we are directly treading on someone else’s rights, or if we risk harming another or ourselves.

Hospitalized children face a massive hurdle in the form of normal developmental milestones, often missed because of illness. Consider the plight of a teenager, on the verge of learning to drive, to date, to leave the nest. What happens when chemotherapy, radiation, surgery, and other cancer supports interfere with brain function, coordination, stamina, focus, attention to detail, and all the other skills that are necessary for teenagers to engage in activities that are age appropriate?

The truth is many teenagers undergoing cancer treatment can’t drive. As for dating, it’s hard to pull off a sparkly prom dress or sharp tux when your head is so…bald. How do you explain to your friends that you can’t go to the library after school because you need a nap? And when you’re invited to a pizza party on a day when you don’t even want to think about eating, what’s your exit line?

Fellow teenagers can be cruel when hormones rage and competition heats up. The little cliques that form on the basis of superficial connections can leave a teenager with cancer on the outside, not fitting in, not feeling like he or she belongs. So, what happens? The heart breaks, the spirit crumbles, and the next thing you know, misery walks in that door. For parents who want their teens to have a normal life, one that doesn’t involve cancer, it’s akin to torture to see your child so defeated. The ache that overtakes you can drive you to drink because you just want your child to enjoy all of the pleasures of being a teenager, without the nasty side serving of cancer.

For adults with cancer, the reactions of friends, neighbors, and colleagues can be devastating. Imagine being well-respected and productive before cancer, only to find that what you were good at has somehow evaporated, and you’re left feeling like a complete idiot. People talking behind your back…the whispers…the gossip…the pity…the sense of somehow being a leper….Your loved one isn’t just reacting to you and the rest of the family. Cancer is affecting his or her life in some very devastating ways that you have no control over, and unless you recognize these issues for what they are, you won’t be able to help your loved one navigate them.

As a caregiver for an adult with cancer, what does this mean for you? Think about your loved one for a moment, especially if you’ve seen some oppositional behavior rise up. Those freedoms that teens look forward to gaining are the very freedoms that cancer often takes away from adults as well. If your loved one can’t function safely on the road, there is no more driving until the situation is resolved. If there are unpleasant side effects from the cancer treatment, it’s a big blow that whacks your loved one’s confidence off the charts when it comes to love, romance, and magical moments in the moonlight. Intimacy very often is more than just a two-way street. The scars and the dysfunction that comes with cancer treatment put a real damper on efforts to reconnect. Sometimes it’s a head game, and your loved one needs time, perspective, and a re-introduction to see the invisible connection that binds you together as a couple is still there. Sometimes it’s a body reality, especially with hormone therapies that cause hot flashes, night sweats, and a decline in sexual arousal. But the biggest problem? What’s it like for an adult to lose his or her independence? It’s like being a child all over again. After you’ve spent years making your own decisions, going your own way, and choosing your own activities, someone is suddenly telling you what to do and how to do it? “I don’t think so!”

For many cancer patients, even those who are sadly aware of their new (hopefully temporary) deficits, it’s maddening to be bossed around. Yes, pills need to be taken and food needs to be eaten, but it’s exhausting to fight both the cancer and the new jailer. That’s why honesty really can be a cancer caregiver’s best tool. The compliance with medication and nutrition is often critical to survival, and it’s important to explain why you need to keep track. When you reach out to your loved one, when you explain your goal of making life more palatable for your loved one, you can open the door to honest conversation.

As an example, let’s say your loved one refuses to take medication. If you insist that it doesn’t matter what he or she thinks, it has to happen, you are de-powering your loved one. Very often, patients who refuse medications have solid reasons for not wanting to take it. You may not see it that way. You may feel your own frustration rising. You may be tempted to slip it in food or drink. But that’s not really a solution to the problem. The problem is your loved one doesn’t want to take the medication. Until you know the why, you won’t know the how. You can’t solve it until you understand what your loved one is perceiving.

How do you change that? First, you ask what the problem with the medication is. Side effects? Taste? The solution for this problem is to speak with the cancer team. Should the medication be adjusted? Is there a substitute medication that can be used? Can the medication be taken at a different time? Is food interfering with it? By identifying the real issue, you narrow down the possible solutions.

Maybe the problem is that your loved one is sick and tired of taking orders, of following the rules, of having cancer. That’s all about restoring the spirit, the sense of personal freedom, of empowerment. How can you give your loved one options? Every day, adults make thousands of decisions. Cancer treatment requires that certain decisions are made for the patient. But that still leaves many, many decisions available for your loved one to make. It’s up to you to offer them.

You can’t change the cancer, but you can change how your loved one experiences cancer. Wherever and whenever possible, your loved one needs to be in charge of the non-lifethreatening decisions that affect him or her — what to eat, what movie to see, what shirt to wear (hopefully without buttons if there is neuropathy), what color to paint the bathroom, what flowers to plant in the garden, and so on. Every time you give your loved one choices, that’s empowerment, and it helps to foster the sense of independence. Some cancer patients want to make those decisions, while others don’t — what matters is giving them the chance to have a voice and the choice to exercise it.

Cancer can feel like a prison. Avoid being the jailer for your loved one with cancer. No matter how sincere or well meaning you are, you’ll trigger all the emotional angst, panic, anger, frustration, and despair that teenagers are so famous for, but with a solid reason. Adults are used to being adults, and when you take that sense of adulthood away, even if you think you have a good reason, what results is the emotional backlash. “You’re not the boss of me!” rings true. Even when your loved one’s thinking is cloudy, even when you worry about his or her safety, you’re still not the boss. You’re the caregiver. You’re the supporter, not the director, not the manager, not the leader.

How do you negotiate around the hot spots of cancer treatment and aftereffects? By understanding them. As a cancer caregiver, the more you learn about your loved one’s issues, the better. There will be specific physical challenges, so find out what they are. There will be emotional challenges, so identify them. And there will be spiritual challenges, so understand that what the heart and mind process as your loved one goes through cancer depends on his or her real-time abilities.

Some of the saddest lessons for cancer caregivers to learn come from the experiences of breast cancer patients. The combination of chemotherapy, hormone therapy, surgery, and radiation will often knock patients for such a big loop, their existing relationships seem to crumble before their very eyes. Not every woman has a successful cancer caregiver when she goes through breast cancer treatment. Why? The impact of the disease and its treatment can completely change a woman’s life as she knows it, and that is a blow that traumatizes the psyche. “I’m not who I was, so who am I now?” Not only does the body usually change with breast cancer treatment, so does the mind when the treatment includes chemotherapy and/or hormone therapy. How do you reconnect as a partner with a woman who can’t remember where she parked her car, pays the same bill twice, and can no longer remember things about your relationship that formed the basis for the romance in the first place?

For so many reasons, cancer can feel like a prison. All the more reason for you to not act like a jailer. When you try to micromanage your loved one, when you attempt to manipulate your loved one into doing what you want done with tricks or strategies, instead of honest conversation, it may feel like you’re winning because you’re getting things done. But your adult cancer survivor is not a child. That cloud of confusion that creates problems for your loved one may not also affect the emotional processing areas of the brain. Your loved one may not be able to remember how to balance a checkbook, but don’t assume your loved one only has the mental capacity of a child and treat him or her as one.

As a cancer caregiver, your most important job is to foster independence in your loved one while preserving safety. You want your cancer survivor to engage in activities that enable him or her to return to everyday life, because that will help restore the sense of self that each of us needs in order to be who we are and what we are.

Yes, cancer has an impact on our loved ones. And yes, it can change how they function. But we should never come to think of them solely as cancer survivors. They are still people we love, people we need in our lives. Our job is not to contain them in the prison that is cancer. We are not their jailers. We are their supporters, and it’s our job to help them find all the tools, strategies, and opportunities to be their very best as human beings, despite cancer. We do that by respecting them as adults, by understanding the frustrations of losing the important activities of adulthood, and restoring to them as much of their functionality as we can, through honesty, respect, and real support for their goals in life.

For more help as a cancer caregiver, visit The Practical Caregiver Guides

We’ve all heard about the Bucket List, that final game plan before the sands run out of the hourglass and life’s soap opera is over. But long before you reach that point in your caregiving duties, you should be helping your loved one to achieve on a smaller, less grandiose scale. That’s real cancer patient empowerment.

I can still remember my mother’s frustration two years before her lung cancer diagnosis. She kept complaining that she couldn’t breathe, that something had changed. Her pulmonologist pooh-poohed her concerns and instructed me to take my mother home, put her in a wheelchair, and take her for walks in the driveway when she wanted fresh air. And all the while, that tumor was growing inside her, cutting off her supply of oxygen.

Mind you, her physician was suffering from his own case of burnout. Too many terminal patients dying on him, a crisis of faith, and a mindset that when life is drawing to a close, you just stick the white flag in the air and surrender.

If you’ve ever hung around health care professionals long enough, you know they don’t walk on water. They have their own problems, just like the rest of the world, and sometimes when they suffer from emotional burnout, as was the case with this physician, it can cloud judgment. I say that, not to condemn the medical profession, but to point out that the first step to achieving real cancer patient empowerment is to have a physician who understands and embraces the concept. (I know they’re out there because those of us who advocate for patient empowerment have had the pleasure of knowing some of them — they are worth their weight in gold.)

I’m trained in Old School patient empowerment. I don’t believe in conning patients with slight of hand tricks or placebos. I’m not big on voodoo medicine or magic spirits to manage stress or pain. I believe that you fix what hurts as best you can — you utilize the services of a pain management specialist to control symptoms that affect quality of life, you understand the progressions and regressions of cancer management, and you get busy making life worthwhile. You don’t go worrying about whether a loved one is going to die six months down the road. You focus on what you can do right here, right now. That’s the phrase I want you to remember. Right here, right now.

Why is it so important to focus on what is currently happening? This is the time you have to help your loved one achieve things in real time. This is your window of opportunity. If you start thinking Bucket List, you’ll procrastinate, because a Bucket List is that grandiose wish inventory of final things to do before you die. Real cancer patient empowerment is helping your loved one function right here, right now.

That’s not to say you shouldn’t pick a trip or two, some fantastic adventure, and do it. I’m all for it, but while you’re planning that trip to the Alps to see where the fictional Heidi lived or you’re deciding between Fiji or Tahiti for that snorkeling trip (Me? I’d do both…), don’t forget to maximize what you have right here, right now.

In case you wondered what happened after my mother’s trip to the burned-out physician’s office, I’ll tell you. She did not go home resigned to that fate. She went home madder than hell. So mad, in fact, that she was determined not to follow his advice. Why? She wasn’t ready to do her Bucket List. She had too many things to do and she had another five years to do them. Think about that. Another 1,825 days. Another 43,800 hours.

If we had followed her physician’s advice, there are so many trips my mother never would have taken, activities she never would have enjoyed, skills she never would have acquired (she actually did learn to use a computer, despite the many tears of frustration), and laughter she never would have experienced. That concept of right here, right now kept her motivated through many physical struggles that plagued her. It was her incentive to keep trying, to persevere in the face of the Big Picture, that cancer had invaded her body and was determined to make inroads.

I learned the concept of right here, right now in college, when I worked in the pediatrics department of a big city hospital, back in the day when a cancer diagnosis meant most of the kids I met would not survive. When you work with children who are hooked up to IV tubes, machines pumping out powerful chemotherapy, and you’re not a medical professional, your job is to focus on the heart, mind, and spirit of the child because you know the doctors and nurses are working on the body.

Play therapy was one of my most important tools for learning about right here, right now. When you know that chemo has a kickback, when you know that it’s going to knock the stuffing out of a child when it finally courses through those tiny little veins, you go for the fun whenever you can. It’s really as simple as that. When I saw a child in an “up” moment, it was time to make the most of it. “Let’s play!” And when I saw a child in a “down” moment, it was all about the comfort. “I’m here.”

Working with kids who have catastrophic illnesses taught me much about life, laughter, and patient empowerment, because I very often saw instant success. That’s because kids love to have fun. It feels good to forget about cancer and all the crappy stuff that goes along with treatment. And when you can get a kid to giggle in a hospital bed, that’s just music to the ears. How can you not feel better when you hear that sound? It’s the sound of hope. It’s the sound of life.

Children naturally want to enjoy themselves, so much so that they throw themselves into the effort, even when they are ill. Most hospitalized kids are not really thrilled to be confined to bed because of physical limitations, and that’s why having the chance to stimulate them through activities, conversation, and opportunities for learning really does matter.

What’s the difference between kids with cancer wanting to have fun and adults with cancer wanting to have fun? In reality, not much. The activities often vary, but the idea is the same. When an adult receives that diagnosis, the first question is almost always, “How long do I have?” That’s that Big Picture, with the Bucket List of things to do before time runs out.

The right here, right now is the Little Picture, the ordinary everyday moments that we use to support our dreams, our goals, our achievements that make up the Big Picture. When we only think Big in our cancer outlook, we tend to think in terms of cure or catastrophe. The best or worst is yet to come. When we think Little, we create the opportunities that keep our loved ones going throughout cancer management. We maximize the days when the physical side effects of treatment are low and we minimize the direct impact of that disease. Think of it as a way to put it aside, so that cancer is not the “be all and end all” of your loved one’s life. Every little step away from the damage and destruction doesn’t just make it better for him or her. It also makes it better for you and everyone in the extended circle. These are the times we celebrate, because we don’t know what tomorrow will bring.

But even more important to real cancer patient empowerment is the understanding of what the right here, right now does for a patient’s psyche in terms of reducing depression, anxiety, fear, and that dread of the Great Unknown. The Big Picture can weigh heavily on our loved ones, empowering the cancer. If your loved one puts life on “pause” waiting for results that may or may not be positive, the quality of life is poor. The Little Picture can lighten that load, by empowering the cancer patient to remain as active and engaged as possible under the circumstances. That improves quality of life, regardless of the cancer’s course throughout treatment.

The philosophy of right here and right now is a way to help you and your loved one concentrate and focus on life. The curriculum is straight out of the School of  You Only Go Around Once, So Do It Right. You are deliberately and mindfully choosing to make the most of what you have at this moment in time, to avoid regrets down the road.

The Big Picture and the Bucket List are almost involuntary reactions to a cancer diagnosis. We understand, when we run smack dab into this rude awakening, that life as we know it is finite and we should make the most of the time we have left together. It’s the Big Wake-Up Call.

The Little Picture and the right here, right now are part of a conscious, deliberate strategy of patient empowerment that requires cancer caregivers to take action. We look for the moments to have fun. We ask our loved ones what matters to them and we help make those things happen. Whether it’s a mother with breast cancer who wants to get to her daughter’s soccer game or a father with brain cancer who wants to take a bike trip, we do it right here, right now by getting on board with the plan and getting them there. Whether it’s a child with leukemia who wants to read a book in a tree house in the backyard or an adult with lymphoma who wants to relax in a garden sanctuary, we start right here, right now to make things happen by building the oasis in the cancer desert. Every time we help our loved ones inch closer to fulfilling the ordinary things they want to do while they manage their disease, we are empowering them to have control over their own lives, despite cancer.

Think of it as cognitive therapy in one of its most glorious forms. When a cancer patient says, “I can’t ever do what I want because I have cancer!”, that fatalistic view of life (and possibly death) colors the decisions he or she makes. The Big Picture controls the outcome of the quality of life, making it a losing situation for your loved one.

When you, as a cancer caregiver, find ways to empower your loved one with meaningful goals, achievements, and milestones of his or her choosing on a regular basis, the Little Picture of everyday life with cancer changes. Suddenly, the “undoable” becomes doable in baby steps. Your loved one begins to experience success on a small, but regular basis. Those steps toward achievement add up as your loved one begins to embrace the concept. That Little Picture begins to influence the Big Picture. Those positive experiences on a daily and weekly basis build genuine confidence and satisfaction, not to mention self-esteem, in your loved one. There’s no waiting for the Big Miracle that might or might not show up on the horizon in the future.

The act of creating Little Miracles right here, right now is a process that requires a commitment from you. You must decide that you will take the opportunities everyday life hands your loved one and find ways to live life out loud, without holding back or playing it safe. That is the right now, right here. When you share it with your loved one, these tiny moments of pleasure give everyone the chance to experience joy, hope, love, and laughter together.

For every cancer patient who has ever felt isolated and alone during treatment, the endless days and long, worrisome nights can seem overwhelming. The little gestures you make right here, right now often mean the most. They are the proof that no cancer patient is forgotten or put out to pasture because of a cancer diagnosis. As long as we are breathing, there is life. What can we do with it? How can we use it so that we feel that we have made good use of our time right here, right now?

Set your conscious mind to making a real difference in the life of your loved one by helping him or her to regularly succeed in doing the things that matter. Utilize whatever tools are necessary to compensate for lost abilities, to shore up skills affected by cancer treatment. At the end of the day, at the end of the week, you will both be able to look back and see that cancer wasn’t in charge of everything. In these Little Moments, you both worked together to empower your loved one to go on. Don’t miss out on them. Real cancer empowerment isn’t just about making life better for your loved one. It’s about making the relationship you share stronger, healthier, and happier. It’s a win-win for everyone.

For more help as a cancer caregiver, visit The Practical Caregiver Guides