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
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