Take Hold of the Terror

I can still remember one of my first times in dealing with an abused woman. I was manning a psychiatric hotline in the early days after graduation, and I got tossed this random phone call from a very real victim. It was an eye-opening experience that has forever stayed with me for many, many reasons.

Her terror at the hands of her abuser was clear. She was tired of being beaten. She wanted it to stop. Inexperienced, following the volunteer organization's guidelines, I stuck to the protocols and gave her the advice I was told to give her. "You need to get away from him. You need to get help...." Easier said than done. Things have changed a lot over the last four decades, and looking back, I can see what I didn't understand back then. Terror will control your life unless you get a handle on it. No matter what causes it, there are ways to manage the fears, even when the threat of harm is real.

Terror is a hard thing to live with, especially when it haunts your every waking moment. There are so many variables, so many unknowns, so many "could go either way" scenarios. Whether you're a woman facing an abusive partner or you're a woman with breast cancer, there's one thing you know too well. Terror.

Long after the bandages come off, regardless of the type you have, you still have to live with the fear of having cancer. Will it pop back up on a scan? Will it manifest as a new physical symptom? Can you outrun it, outmaneuver it? Will that new treatment work? These are the thoughts many cancer patients experience over their time managing the disease.

Oddly enough, they are so very similar to those of abuse victims trying to outwit their abusers. So, can a strategy that helps victims of abuse also help cancer patients?

Over the years, I've come to appreciate a very complex and layered approach to helping victims of abuse, especially those whose abusers are obsessed with them. Most abusers get fixated on their targets and refuse to let go. Their waking hours, and sometimes even their sleeping ones, are dedicated to figuring out ways to bring those victims back under control.

Imagine what it's like for an abuse victim to be a target of someone who wants control. That's real terror. And real terror very often will actually drive the behavior of the victim, making it an effective control. So, the first step is always to find ways to empower the victim in safe ways.

Safe ways? Isn't any way that you can get a woman away from her abuser a safe way? No. The reality is that you can actually provoke more violence with the wrong approach. You can trigger violence by saying and doing the wrong thing. By backing the abuser into a corner, you may actually find he rallies all of his strength to attack in a do-all, end-all, to-the-death finish.

Many victims of abuse benefit from having a team of people who are all on the same page, who are all working from the same playbook. The idea is to surround the victim with people who help her replace that terror that has become a part of her life with new thinking. "I don't have to live this way. I don't have to always be afraid. I can get out from under this pain."

If you've ever seen movies like "The Burning Bed", you know that sometimes abuse victims go to extremes. But the real solution doesn't involve confronting the abuser and knocking him back. It involves changing how the abuse victim perceives the abuse and the hold it has. Move an abuse victim away from the source of that terror, not by pretending that the fear isn't real or isn't dangerous, but by creating a team of real support.

When an abuse victim is most terrified, there is comfort in numbers. There is a sense of safety in being around people who are reassuring, strong, confident, and calm. Learning to let go of the psychic pain of abuse is a process that takes time, practice, energy, and above all, the right kind of support.

For every cancer patient who can't sleep for fear that as he or she does, the cancer is setting up shop again in the body, who walks through the days and nights feeling battered, real support is critical. It isn't a matter of saying, "Everything will be fine. Don't worry." That's like telling an abused woman not to worry about the shadow she saw outside her window last night. It's probably not the boyfriend who beat her mercilessly a year ago. Cancer patients, like abuse victims, have the right to worry, and they often have solid reasons to worry. But they still need to live life out loud.

How do you do that when there are shadows and unexplained noises and things that go bump in the night? For every cancer patient who feels betrayed by his or her body, being a victim of the disease stinks. Feel vulnerable? Feel weak? Feel useless? You will begin to believe that you deserve what you are experiencing as a cancer survivor. And let's not forget the fact that many cancer survivors and their caregivers find people in their social circles melting away as the disease progresses. It's a fairly common occurrence because we all have those fair weather friends who can't handle the storm, but we also have the diehards who never desert the ship. We need to let go of the people in our lives who don't support us and we need to utilize the ones who do.

When an abuse victim changes his or her mindset, when the feeling of self-confidence, self-esteem, and even personal strength begins to flow back, that's when the real healing begins. You begin to feel worthy of protection. You choose to be proactive in taking care of yourself and preventing any further abuse. You value yourself, your life, and those around you who stood by you in your time of need. Little by little, day by day, as you go on, as you feel the terror fading, you begin to believe in life again, in love, in goodness.

Some people think that anger for an aggressor, confrontation, and even rage is the way to fight back, but in my experience, the best healing is that which takes the victim to a better, safer place by moving him or her away from the source of the continuous violence and psychic pain. Immersion in that lifestyle of repeated abuse only reinforces the terror. She needs a break in the pattern to be able to see that it's possible to live without it. And once there is that light at the end of the tunnel, much is possible. Having an imaginary conversation with her abuser very often allows a victim to put perspective to the abuse, to begin to understand what she's endured, what she's missing in life, and what she wants to change about her life. That conscious process begins to sort out all the powerful emotions she grapples with when terror is in charge.

There's a difference between a woman confronting her fears about her abuser, shouting to the heavens that she's not going to take it any more, and a woman confronting someone who has the actual physical capacity to kill her. Unless she's on equal ground with her abuser and has the ability to safely defend herself, the last thing that's really helpful is allowing her to punch out his lights, especially if he's obsessed with her. It will only feed his need to control, to manipulate, to master his victim. When you come between an aggressor and his victim, and you intervene by distraction, disruption, and deflection, you are interrupting his pattern of abuse, changing his access to the victim, so that he's not as satisfied by the attack mechanism.

Cancer, like an obsessed stalker, is not a person with real feelings or rational thought processes. It's not a person with whom you can argue or negotiate on real terms. Cancer is cancer. You want it as far away from your loved one as possible. You want to intercede as best you can to keep it at bay. And you want your loved one to know that you will do what you can to make that happen. But you also need to respect your loved one's need to understand how cancer has changed life for him or her. There is an internal battle going on, one that will be decided by the cancer survivor. You cannot make your loved one go through the process of making peace with cancer's abuse. You can only be the supporter of your loved one.

In taking that approach, you are mindful of the power cancer has over your loved one. You probably feel some of that terror yourself now and again. But when you think of cancer as something that paralyzes your loved one with fear, you can begin to understand that utilizing your strength as a caregiver means you can help your loved one overcome that terror. You can help your loved one reclaim personal power and personal choice.

Yes, abuse victims and cancer survivors often find themselves trapped by their fear of the next blows, the next attack, the next time it happens, and it's up to those of us who love them to help them find their way out of that horrible darkness, not with fairy tale platitudes or cartoon solutions, but by recognizing the power of the fear over the victim and the need to move the victim into a safer environment, one that offers real support and real strength while the victim heals.

If you really want to help your loved one come to grips with the terror of having cancer, look around you. Who do you know who has been through cancer and survived? Very often, people who have had more than one fight with the disease have developed strategies. Talk to cancer survivors. Get involved with support groups, whether in person or online. Listen to people who have been there, done that, and got the tee shirt. They will tell you what worked for them. It's rare that you will find a cancer patient who has navigated that difficult time and refuses to share insight and wisdom.

But don't stop there when you are forming a support team for your loved one. Who do you know who has had major challenges in life and survived them? Look for people who have had experience in overcoming the odds. These are people who have worked on building their inner strength, and inner strength is required for the battle on terror. They may not have first-hand knowledge of cancer, but they know what it's like to manage terror on a regular basis. Learn from them. How did they handle that constant barrage of in-your-face fear? How did they overcome the endless worries and put things in perspective?

And most important of all, minimize the contact your loved one has with people who secretly feed that terror, who have those all-too-familiar stories, complete with all the gruesome details of how the disease came back overnight and swallowed their loved one whole..."dead within a week...nothing the doctors could do...absolute disaster!" Take heart from the new reality of the war on cancer. Every single day, treatments are being developed. What was the cancer fight ten years ago is very different than the cancer fight five years ago. What was the cancer fight five years ago is very different than the cancer fight today. What matters is what's happening now, not what Aunt Bertha and Uncle Herb went through back in '69. As cancer treatments evolve, much of what went on in the last decade is now almost ancient history in cancer management.

Support your loved one by recognizing that it's not just the cancer and the treatment of the disease that affects him or her. It's also managing the terror of having cancer. Help your loved one to find safe, effective ways to readjust to life, by understanding the grip cancer has on the psyche. When your loved one feels surrounded with genuine support, real strength, and understanding of the healing process, when your loved one feels understood, that's when the real healing begins. You will never be able to promise a cancer-free life, but you can, and should, promise to be there through the days and nights of terror.

There is strength in numbers, in hands joined together, in comfort that is borne of the desire to empower. It's not about having a magic wand to wipe away the pain or fear of having cancer. It's about being there and giving what the cancer patient most needs -- your wisdom, you compassion, and your commitment to provide what is required for healing the body, the heart, and even the mind. When you pull all of that together, the spirit finds its wings again and can fly.

Every cancer patient needs the freedom to live life out loud. That's because it's what every human being, with or without cancer, needs. Getting back to being human is the biggest hurdle for cancer patients, and the road can be bumpy. Smooth the way for someone you love. The rewards are great. Not only will you gain insight and understanding of life and love, your world will be enriched by having the chance to rub shoulders with some pretty amazing people.

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

When Cancer Feels Like a Prison Sentence, Don't Be the Jailer!

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

Real Cancer Patient Empowerment -- Rethinking the Bucket List

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

Rah, Rah, Sis-boom-bah! Cancer Is Not a Competitive Sport!

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