Category: caregiver psychology

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cancer caregiver caregiver education caregiver psychology holidays Thanksgiving

What Do Cancer Patients Need for a Happy Thanksgiving?

Oh, I’ll bet you’re expecting me to tell you all about how to teach your loved one with cancer to appreciate being alive at Thanksgiving, how to embrace the mood, the moment, the celebration. After all, we gather to give thanks for what we have, as extended families bring green bean casseroles and pumpkin pies in Pyrex and Tupperware. What could be a bigger downer than having a loved one with cancer at Thanksgiving? I’ll tell you. It’s having a loved one who is disrespected at Thanksgiving.

That’s right. Disrespected. Flat out disrespected.

How can I even suggest that, when everyone is trying so hard to be inclusive of someone who’s struggling with survival? I’ll tell you how. That’s because I’ve witnessed it more than once. (I’ve also heard it from a number of cancer survivors, how the family dynamics change.) The loved one with cancer becomes overwhelmed, physically and emotionally, trying to keep up with the party, and suddenly it’s an up-in-your-face reminder that you’re dining with the Big C.

The trouble is that healthy folks, who may not have any insights into how cancer takes its toll, are still in B. C. mode (that’s “before cancer” for those of you who are new to the game.) They often like to eat themselves silly with all of the classic Thanksgiving Day staples, like cheddar broccoli and stuffing with sausage. They can’t wait to get their hands on the drumsticks, the dinner rolls, and especially the desserts. Nothing is going to stop them from partaking in all the food and fun. They’re on a mission, a Thanksgiving Day mission.

Meanwhile, your loved one may be struggling with some very real physical and emotional issues that need addressing. Now that cancer has rocked your loved one’s world, it’s time to adapt to the reality of those changes.

Does that sound complicated? Do yourself a favor and don’t over-think it. Concentrate on two things. Food and rest. It’s really that simple.

For a cancer patient, especially one still undergoing chemotherapy, the holidays can be exhausting in many ways you have probably never experienced. Here are some important questions to answer:

1. What time of day does your loved one have the most energy?
2. What time of day does your loved one have the least energy?
3. What time of day is your loved one best able to enjoy a meal?
4. Will your loved one’s chemo fatigue kick in, and will he/she need to take a break?

Bottom line? It’s just possible that your loved one just doesn’t have the stamina to endure the Thanksgiving Day celebration. Are you hosting or are you visiting? If you’re hosting, it’s fairly easy for your loved one to slip away and lie down when he/she is tired. But if you’re visiting, you’ll need to speak to the hosts ahead of your arrival. Ask if there is a quiet room where your loved one can rest, should the need arise. Sometimes just lying down for an hour or so can keep a loved one at the party.

Some cancer patients make special arrangements for chemo treatment to accommodate the holiday, so that they don’t “crash and burn” on Thanksgiving. They talk to their oncology team early and discuss strategies to cope with this issue. Encourage your loved one to do this and sit in on the discussion, so you understand what’s going on in chemo treatment.

Remember to err on the side of caution if your loved one’s immune system is conked out. Better safe than sorry, especially during flu season. Hand washing by guests is critical. Avoid kissing and hugging. If the risk of infection is too high, consider staying home and having a video chat with those near and dear.

If you and your loved one have a long drive to make, be sure to bring along a pillow and a lap blanket, so your loved one can get comfortable. Consider the drive to be “rest time” and make it relaxing for him/her.

When it comes to the Thanksgiving meal, know what your loved one is able to tolerate. Many cancer patients can’t eat certain foods. If you’re hosting or you have a good relationship with the hosts, work on a menu that will please the turkey traditionalists, but will also provide foods your loved one can and will eat.

Very often, families aren’t aware that cancer patients find eating to be an exhausting process. Chewing will actually tire them out. The nutrition team at your loved one’s cancer center can help you plan a banquet that includes foods that will provide the necessary calories and be easily digested. They often have all kinds of tricks for adapting foods to make them even better. Not every cancer patient is going to have the same diet. Different chemo drugs and different types of cancer create different dietary needs. If your loved one is experiencing diarrhea, for example, greasy foods may exacerbate that situation and cause distress. That’s why it’s important to sit down with a cancer nutrition expert and understand how best to meet your loved one’s specific dietary issues. Consider it part of the medical treatment plan.

Got a good recipe for butternut squash soup that you know your loved one enjoys eating? Serve it as part of the family meal, so your loved one won’t feel singled out for special treatment. Will there be appetizers before dinner? Cancer patients sometimes do better when they nibble than when they sit down for a huge meal. In this case, he/she won’t “ruin” his/her appetite. Don’t draw a lot of attention to your loved one’s eating. With healthy, digestible food choices present, your loved one can eat as he/she sees fit.

Understand that chemotherapy can change how foods are digested. It can also change how they taste to your loved one, and that can and will affect appetite. This is usually a temporary thing. Some cancer patients who love dairy develop lactose intolerance, much to their dismay. Some patients can’t digest raw vegetables, so cooking them can make a difference. Some fruits go down easier than others. Very often, the recommendation from nutritionists is to puree foods, to make them easier for cancer patients to eat. Smoothies don’t require chewing and they’re usually quite soothing to sip. (Have I convinced you yet to talk to the cancer center’s nutrition team yet? I hope so. They’re more than willing to help you feed your loved one.)

Remember to leave the food police at the door when guests arrive for the Thanksgiving celebration. No one should be commenting on your loved one’s food intake, insisting he/she eat this or skip that. Sometimes a spoonful of sugar, in the form of human compassion, is the best medicine to go down. If you and your loved one know ahead of time what foods will work and what will not, there’s no need to explain or defend yourselves. Just smile and say, “Thank you for your concern, but we’re following doctor’s orders.”

With all this talk about food and fatigue for cancer patients, I don’t want to neglect a very delicate subject. Holidays can bring out the worst in some people. Tensions run high with elevated expectations of “instant happiness”. Some families bicker. Some families think there are only certain ways of doing things. A cancer patient’s needs can and should come first. Work around them. Adjust the celebration to accommodate your loved one at that moment in time. If that means you eat an hour or two earlier or later, so be it.

What do you say if a family member balks? You say this: “I know we normally do things that way, but this year, we’re going to do it this way. And I’m sure when our loved one is back on his/her feet, we’ll go right back to doing it the way we’ve always done it.” Treat any changes in holiday traditions as temporary, because they usually are. When families know that you’re not throwing out the time-honored traditions permanently, you’ll often find greater cooperation and willingness to sacrifice.

Most of all, when you all sit down and look across the table at each other, focus on why it’s so good to be there. Appreciate the family for the people in it. Take the time to laugh, to share stories, to toast another year of life for all of you. You have this time, this moment to share. Make memories.

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cancer caregiver cancer management caregiver education caregiver psychology caregiver strategy

Match the Cancer Support to the Cancer Needs

I remember a very trying time, when my mother was dying of lung cancer. Someone who knew that she had been treated for cancer asked how things were going. Short answer? Not good.

Normally, most people might ask if there’s anything they can do to help. In this case, the person proceeded to launch into a long description of her husband’s long-time prostate cancer situation, and ruminated about his once-in-awhile pill treatment regimen. At the time, I was spending my days and nights providing physical, emotional, and even mental support for a woman who was very frail as the result of the progression of her cancer.

What do you do when someone “ups” you after inquiring about a loved one’s cancer? Walk away. In this case, I learned the hard way that this woman was claiming her husband’s cancer as some kind of badge of honor. She was in her glory, suffering alongside him. Guess what…after another five years, her husband’s still going strong, still living a great life, without any serious health issues. And she’s still playing the cancer card, to make herself seem important. Goes to show you that not all cancer is equal and that cancer survival depends on the type, stage, and treatment options.

It’s sad, but true. Many people who have loved ones managing what we might term “highly survivable” cancers often lump themselves into the same group as those of us who are struggling to help our loved ones with progressive cancer. What does this mean? We have two very different kinds of caregivers.

If you are providing physical care to a cancer survivor who is not thriving, especially if the treatment is harsh and the side effects are debilitating, it’s important for you to recognize the stress you and your loved one are under and to acknowledge it. This is not a death sentence for your loved one — far from it. You may be on that roller coaster as a family, riding the ups and downs of cancer management. When you accept the reality, that your loved one is struggling, you can take advantage of a very important caregiver tool — the chance to decide how your relationship will be defined.

For those of us who have walked in these shoes, we know that having the chance to make these decisions allows us to find peace at a critical time in cancer care. When we see the struggles of our loved ones, when we understand their impact on the family and our extended social circles, we take actions that often times make an enormous difference for all of us.

Not all cancer is equal, so when cancer becomes the greater part of a loved one’s life, that is the time to up the family bonds. In the short summer of sunshine and butterflies, we move about easily, finding food abundant and life pleasant. In the long winter of despair, we need warmth, comfort food, and laughter to see us through the dark hours.

Having a woman compare her husband’s non-debilitating prostate cancer to my mother’s debilitating lung cancer was a real eye-opener. It was hurtful, to boot. I knew I wasn’t going to change her opinion or mindset. That was too wrapped up in her personality and her need for attention, both of which existed before her husband’s cancer came along. But it did give me a good kick in the fanny that I needed. It made me determined to fit my caregiving to what my mother really needed. More enabled activities to please her through difficult hours. More emphasis on asking her what she needed to do, rather than focusing on my own needs. More determination to make good things happen for her while she had the energy to accomplish things on her “to do” list.  Knowing that my sacrifices would soon end enabled me to make greater sacrifices  for her while there was still time.

There is honor in helping another person live. It’s easier to defer one’s own satisfaction for a year when one knows that life is finite, to put goals and plans on hold. We can make better decisions that produce better results and greater rewards by being mindful of reality. We are not waving the white flag of surrender. We are living in the moment and making the moment count. If anything, my mother lived longer because she was able to do what mattered to her, instead of spending her days feeling like a helpless victim. And I was able to get through the trying times by constantly reminding myself that my days as a cancer caregiver would soon end. Like a marathon runner, I learned to pace myself as I ran up the hills and around the curves in the cancer road. I took advantage of the good days to make progress, to find the joy. When you look for something to celebrate, some little snippet of goodness, you will often find it. When you assume there is no light, you will see only the black night of the soul. Choose wisely. What does the heart need, even as the body fails? What does the spirit seek, even as the body fails? When we give a loved one wings to rise above the mortal limitations, we enrich our bonds in amazing ways. This is the time to build lasting memories to remind us that love is a powerful thing.

The fact is, sadly, that for some cancer patients, there is no cure, no magic wand to wipe away this hideous disease. When we are mindful of the level of struggle our loved ones are currently experiencing, we are able to take advantage of the information in ways that can be life-changing. By realizing just how far my mother’s health had deteriorated, I was able to understand that the cancer and related complications were progressing. That meant that the hourglass was running out. As a caregiver, I would soon be out of a job. I needed to know that, in order to maximize the support my mother needed and to pace myself, to accommodate my own life.

A cancer caregiver may go through a number of periods of providing care, and that care may be of varying degrees of hands-on involvement. Very often, especially for the newly diagnosed, the treatment itself is overwhelming to the physical body. Our loved ones look like the Walking Dead until the impact of chemotherapy, radiation, and even surgery kicks in. We may go back to our normal lives and forget about cancer until the next scan shows something or a new symptom appears. Then we jump in again and help out until our loved ones are back on their feet again. But if and when there comes a time that the cancer proves too great a foe, we need to accept the reality and maximize what time we have left with our loved ones. We need to take the trips, have the parties, be together in ways that allow our loved ones to embrace the life that is still with us.

Some people think it’s best to soldier on, to pretend things are good when they are not. Denial prevents us from embracing the love, from finding the opportunities to live life out loud. When you see the changes in your loved one, when you feel that dread in the pit of your stomach because you can recognize the physical signs, consider this the winter of your loved one’s life. Don’t run away or hide. Build a mental refuge where the family can gather. Fill it with warmth, laughter, and comfort, with people who love your cancer survivor. Reach out to those who are receptive to your loved one’s plight. Ignore those who are not.

What did we find in my mother’s last months? The good friends who cared about her kept calling. The fair weather friends fell away. The relatives who understood the importance of sharing the love came calling. The ones who didn’t stayed away. The real tears were shed outside my mother’s room. The crocodile tears were shed for effect, with a lot of hand-wringing, lamenting the situation in public settings.

When people ask a cancer caregiver what is needed for a loved one whose condition has deteriorated, it’s hard to sometimes say. I can tell you what my mother told me. She wanted cards and letters. She wanted to know that, even as she was confined to home, she was not a forgotten prisoner, locked away. Did she still matter to people? Did they think of her? Did they want to share what mattered most, in their hearts, their minds?

When a cancer survivor begins that last descent, it doesn’t happen overnight. It happens over time. Months, weeks, and finally days. If a cancer caregiver recognizes the signs when death is still months away, there is time to build some very wonderful memories. If a cancer caregiver only pays attention in the final weeks, there can be a great rush to get so many important things done, it’s exhausting. And if a cancer caregiver only wakes up to the reality days before a loved one takes his or her last breath, the result can be devastating for everyone.

My mother benefited from being able to express her worries, her hopes, and even her dreams as her life drew to a close. That enabled us as a family to find ways to comfort her, to encourage her to speak up about what she wanted, for herself and for the family, and even to address the future without her. Many people think that speaking of death is a grim subject that only hastens the end of life. But for many cancer patients, having the opportunity to live the reality means freedom to enjoy the time that is left. Life becomes a great gift, all the sweeter because we know we will soon say farewell, and in the knowing, we have the chance for that one last dance.

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cancer caregiver caregiver education caregiver psychology fear PTSD

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

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cancer caregiver caregiver education caregiver psychology

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

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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

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Can’t Make a Real Difference for Cancer Families? Go Wait in the Truck — Part Three

I recently turned down an opportunity to be a guest on a cancer show. I had my reasons for doing that. So many cancer families feel alienated and alone, abandoned in their time of greatest need. I believe we can and should do a better job of helping those with cancer and the people who love them to connect. We do that by addressing the real issues. There’s no magic pill that will make things better for cancer families, but with real caregiver education and a concerted effort, I do believe we can bridge the gap for patients and their families. If cancer patients are now living longer, those lives can and should be filled with meaning that rises above the ugliness of the disease and its determination to destroy the body.

Sometimes it seems that everywhere you look on the Internet and beyond, you hear the word “cancer” bandied about — it’s pink, it’s popular, it’s presumptive. Not all people who utter that word have the same depth of understanding about how it truly impacts lives. When you see families struggle over the years as a loved one goes in and out of cancer treatment, you begin to understand how critical education is to a cancer caregiver. A good cancer caregiver is always one step ahead of the disease, aware that things can go bad at any time.

I’ve talked to a number of people who have had repeated bouts of the disease, and the one image that stays with me, the one real truth I take to heart is this — you have a far better shot at staying around and enjoying your life if you don’t keep yourself stuck in denial. Cancer is cancer, especially when it’s in the genes. That means cancer could come back at some point, even ten years down the road. When you know this as a cancer patient, it usually changes how you live your life. You change your decision-making processes to factor that in. You may even change your outlook on what you want to accomplish and how you want to get it done. Cancer caregivers must understand the changed reality of their loved ones — it’s more than just the physical effects of the cancer. It’s also the mental, emotional, and sometimes even spiritual impact that alters a cancer patient’s world, one that needs to be appreciated for what it is — the sometimes dreaded “new” normal. How can we help cancer patients feel as safe and secure as possible under these circumstances? That’s what real comfort care is.

Here are the questions I intended to tackle on that show. I hope that by the time you finish reading the answers, I will have challenged you to think about cancer caregiving in a new way, to see a new path or a new direction in which you can take that care and improve life for your loved ones.

1. Do different types of cancer require different kinds of caregiving?

Absolutely. For someone who is able to physically function independently, your job may require being there as an emotional supporter. For someone with issues such as chemo brain or who has brain cancer, you may be dealing with mental processing issues, such as confusion, lack of focus, inability to concentrate, or even loss of critical memories. That can have a huge impact on your loved one’s personality. Patients with lung cancer might feel like they are suffocating slowly, which will create tremendous anxiety if the physical symptoms aren’t well-managed. And for patients with “intimate cancers”, such as breast, cervical, ovarian, colon, and prostate, there are often complications that result from our loved ones’ new perceptions of themselves and even our own changing perceptions. Scars can be found on the body, but more often inside — in the heart and mind. Those unaddressed worries, fears, angers, and sorrows will do as much, if not more, damage to the relationship between cancer patient and caregiver as will the actual physical results of the cancer treatment.

A cancer caregiver actually needs some training to do the job effectively. We don’t let health care professionals work with patients until they have had training and certification, but somehow it’s expected that cancer patients will receive adequate care outside the hospital setting, by virtue of having a caregiver, usually a family member, minister to his or her needs. You don’t expect your general practitioner to set a compound fracture — you want a specialist to do this, someone who handles these types of breaks on a regular basis and can recognize when things aren’t right. Cancer caregivers need ongoing training as cancer warrants it. If a loved one’s cancer is caught in the early stages and the prognosis is good, that individual isn’t going to need much from the caregiver. On the other hand, when the cancer is found at a later stage, is aggressive in nature, or is complicated by other health issues, such as heart disease, diabetes, or affects independence, the cancer caregiver really needs to know the “what next”. Without it, you have two miserable people guessing at what might work, what could work, instead of implementing successful strategies that keep them headed in the same direction. That’s why caregivers need to understand the type of cancer involved and the most common complications and issues.

2. What’s the difference between a serial caregiver and a progressive caregiver when it comes to cancer?

A serial caregiver is someone who has to step in when a loved one’s health is challenged and step back when things shift back to the point where independence is realistically viable. It’s important to understand what kind of help is needed, to meet the real problems. Serial care is hard to plan for, because a cancer patient may experience a sudden down turn in treatment, or there might be a complication when the immune system is compromised. It’s up, it’s down, it’s up again….This can create problems for both the cancer patient, especially if he or she is still working, and the caregiver. If you know ahead of time that this might happen, you can develop your strategy as a caregiver. You can build your resources list, build your caregiver team, know who you can call on for what and when. That means actually being mindful of your potential issues, whether it’s emergency child and/or pet care, home maintenance, volunteers to spot you for respite time, or even who can drop off that gallon of double chocolate fudge ice cream you know is the only thing your loved one craves after chemo. A serial caregiver has to transition to the realization that having a caregiver team, a cadre of helpers to call upon, creates better options for everyone.

With a progressive illness, caregivers must be aware of the fact that over time, a loved one’s health will go into decline, eventually resulting in death. It’s important to plan ahead, to engage mindfully in activities that will make that journey as meaningful and positive as possible. Too often, when people hear the words “terminal”, they assume that life ends right there and then. We all will someday die. We should recognize the potential in having a chance to live knowing that our time is limited. A good progressive caregiver handles the heavy lifting in gentle, kind ways. “What would you like me to do about this? What should we do with that?” Very often, for terminally ill patients, the greatest challenge is overcoming the fear of death and dying. Many people fret away the hours. But sometimes knowing that it’s okay to talk things through, having a good listener really wanting to know the answers, a cancer patient can open up about what’s on his or her mind, and that’s when a caregiver has the chance to make good things happen. We all have a “Bucket List” in us. A good progressive caregiver starts ticking those items off, one by one, by finding ways to enable the cancer patient to continue living life out loud right up to the end.

Serial caregivers get the job done while still living their own lives in their “off-time”. You still maintain your social life, your interests, your activities, but you might pause them when your loved one needs care. That’s not an easy thing to do when your loved one is terminal and there’s no cure possible. As a progressive caregiver, you have to mentally shift your focus away from your own life to the needs of your loved one as the disease changes everything. You don’t want to skip the important things in life because there isn’t any “do over” once a loved one is gone. It takes real effort to focus on the knowledge that your days as a caregiver will end when your loved one dies. That reality can actually free a caregiver to put his or her own life on hold, for a year or more, with the realization that at some point, it will be time to begin a new life.

3. Do cancer patients with “intimate” cancers (such as breast, ovarian, cervical) have a greater need for peer support?

Honestly? I don’t know how we can expect them to cope without that kind of support. Unless you are a cancer survivor yourself, you need to let your loved one mix and mingle with other cancer survivors who have dealt with these specific symptoms and complications. There are many people out there who have been there and seen first hand how it changes one’s life. Very often, “intimate” cancers affect more than just one’s body image, especially if there has been serious surgery and scarring. It can be tremendously reassuring to have a mentor help you navigate the healing process. You benefit from the wisdom of knowing someone else faced these same problems and made it through. You need to know, as a cancer patient, that there are ways to work around the obstacles.

But sometimes cancer caregivers are a little reluctant to share their loved ones with peer supporters. There can be an over-developed sense of responsibility, that “…it’s my job to provide what my loved one needs!” Caregivers should never be the only one to give that care. In hospitals and medical centers, no single physician ever provides all the care. Health care professionals with varying levels of expertise and skills come and go in the patient relationship. Cancer caregivers don’t need to feel threatened by the idea that other people can make their loved ones feel better. It’s part of the whole-person healing process. Some cancer patients feel like such a burden, they hold back their true emotions from loved ones. We all need to vent our feelings to the point we can recognize what’s real and what’s not, so we can get to a healthy place. When cancer patients are free to share with others, it often helps them find that perspective. When they are stuck with a single caregiver, the result can be isolating.

Equally important, caregivers affected by their loved ones’ intimate cancers need to get peer support as well. It’s important to understand how to shift gears emotionally and to recognize that as tough as it is for you, it’s tougher for the cancer patient. By finding ways to alleviate your own pain and distress about the cancer, you’ll be in a far better position to really help your loved one. Talking to caregivers who have successfully navigated these mine fields can be tremendously empowering.

4. How does guilt get in the way for healthy cancer caregivers?

It’s survivor’s guilt that gets in the way most often. We feel bad that our loved ones are suffering, so we try the “misery loves company” strategy. If we suffer alongside our loved ones, they will know how much we care, won’t they? Cancer patients often feel guilty enough, and when they see their loved ones declining, it’s just an added weight on their shoulders.

Sometimes cancer patients can feel left out and resentful when they can’t participate in normal activities that their caregivers enjoy. When I left for respite time, I often took my camera with me into the woods or up the mountain. I shot photos of interesting things I thought my mother, the nature lover, would appreciate. She got to see them when I returned home. For her, it mattered that I was still thinking of her when I was out in the “real world”, even as she was stuck in her recliner. She got to see what I experienced, even as she knew she didn’t have the strength to make the trip herself. Sometimes it’s reassuring to know that caregivers aren’t “escaping” when they take respite time. If you need to “get away”, it can trigger panic in a cancer patient that you want to abandon him or her. There’s a difference between healthy respite activities, that leave you feeling refreshed and reinvigorated, and that desire to jump ship. We caregivers all have our moments of feeling like fleeing. That’s why you need your own support team, to talk you through it, to help you find solutions for that sense of being stuck. As much as caregivers feel their own lives are curtailed, it’s nothing compared to what cancer patients can experience.

Caregivers need to recognize that there are still ways to help cancer patients feel better, even if they can’t be made better by medicine. How many times have cancer patients been asked, “How are you feeling?” So often, the answer is, “Not so great.” Some people want to know. Some don’t. And some people just can’t cope with sick people. That’s where the isolation begins for many cancer patients — when the reality of cancer is that you just feel crummy. A friend was devastated by the obvious change in a cancer patient she knew. She didn’t know what to say. Do you ask? Do you ignore? A wise counselor told her this: say “I am so happy to see you.” Those words can and do ring true for a cancer patient. It says, “Regardless of what’s going on with your cancer at this moment in time, I am glad you are here.” In the end, all anyone really wants is to feel connected to genuine warmth and affection, isn’t it? That way, it doesn’t matter how a cancer patient looks or feels. What matters most is that the cancer patient still has people who care.

5. Why is communication between cancer patient and caregiver a critical tool in maintaining quality of life for both?

If a cancer patient can’t be honest with a caregiver, how will he or she get the right kind of help for what’s ailing the body, the mind, the heart, or the spirit? Some people just don’t handle a loved one’s cancer well. When a caregiver is so emotionally overwhelmed by his or her own perceptions and misperceptions about cancer, or there is a long troubled history between the two, that cancer patient is going to experience a lot of frustration in not being able to effectively communicate his or her real needs.

Some of the most successful relationships I’ve seen between cancer patients and their caregivers are the result of the caregivers “getting” their loved ones. When you feel understood as a cancer patient, when you can voice your fears, frustrations, or even anger to someone who is genuinely looking to find ways to make you more comfortable, you begin to develop trust for your caregiver. Caregivers really have to have thick skin sometimes. You can’t take the things your loved one is saying to heart, or feel wounded. It’s important to recognize when emotions are talking, and help your loved one work through them. Sometimes you have to step back and let a cancer peer step in. Sometimes you have to let your loved one vent without trying to “fix” it all. Very often, cancer patients need to become aware of their fears, and they do that by blurting things out in the heat of the moment. When the dust settles, the real issues begin to surface. And then there are those times when you really need to be honest with your loved one, to admit you don’t have all the answers, but you’re committed to finding what will work. It’s important that your loved one believes your efforts are genuine, even as you seek the appropriate answers.

6. Why do caregivers need to know what comes next for their loved one in terms of prognosis and options?

If you have no clue, you can be completely broadsided. I liken the need to know to storm preparedness. If you know there’s a chance that a hurricane can hit the coast, you can board up the windows, sandbag the perimeter, and get your food and water supplies ahead of time. You can get a generator, learn how to use it properly, and even plan an evacuation route should the storm turn more dangerous. We all can agree that’s a sensible course of action in the face of the potential for such a weather event. So, too, should we do this for cancer patients. It’s not that you are predicting a turn for the worst for a loved one. It’s that you’re educating yourself as a caregiver to the potential. You’re getting prepared. That means that if you begin to see signs that pressure is building up, you can act.

A number of cancer patients have told me that they fear every time they think they’re seeing changes in their bodies. Is that a new lump? Is that pain in the ribs now bone cancer? Is the forgetfulness an indication that cancer spread to the brain? Every day, cancer patients have to cope with new or existing fears about the disease. A cancer caregiver who is prepared can start to poke and prod information from the cancer patient, can be the supportive listener who says, “Let’s get it checked out.” And a really good cancer caregiver never poo-poos anything that a cancer patients says. We need to accept what our loved ones are telling us, even when we don’t want to think the cancer has spread. It’s important to recognize that when new symptoms seem to arise, very often these issues are just normal body changes. But for those few occasions they are something more sinister, we need to encourage our loved ones to act.

Every long-time cancer survivor I have ever met has one behavior in common with the other survivors. They all are proactive in treating the cancer. Some get to the point where they can actually recognize the tiniest of changes and they get right on it. We need to realize that being aware, as scary as it might be, usually gives our loved ones the best shot at not only having a longer life, but a better life. It’s not just about surviving with cancer. It’s about thriving with it.

7. Why is palliative care not just about death and dying, and how can it help cancer patients to survive and thrive?

I wish we could change the name from palliative care to comfort care. Palliative care has somehow become synonymous with death and dying. The reality is that pain management, symptom management is all about keeping cancer patients as comfortable as possible. It actually has been shown to lengthen life, rather than shorten it. Some cancer patients get treatment aimed at cure right up to the day they die. They spend all of their time getting whacked by chemotherapy, radiation, anything that will provide them with a potential cure. Patients and caregivers benefit from a reality check. If the cancer has spread, if there are new symptoms, sometimes it’s okay to switch from focusing on a cure to focusing on comfort. For some cancer patients who are at the point where there are no new miracles, enrolling in clinical trials and trying untested drugs may be a viable option. If a patient gets palliative care to handle the difficulties, it’s easier to partake in that opportunity. That’s a decision that every cancer patient needs to make by being fully informed about the status of his or her cancer. As terrible as that sounds, sometimes really good things can come of it. I’ve met cancer patients who were diagnosed as Stage 4, still alive more than five years later. By being as painfree and healthy as possible, these patients can better tolerate new treatments that offer the promise and hope of disease management, if not cure.

Palliative care is all about easing the distress a patient experiences, whether it’s physical, mental, or emotional. Managing nausea means food can be better ingested and digested. Dealing with nasty side effects, relieving the discomfort, can actually enable a cancer patient to better survive treatment. And sometimes cancer patients really need help to handle the anxiety of cancer. An agitated patient is less likely to comply with medications and nutritional needs. Some patients may be so depressed, they may assume death is so inevitable, they give up before the cancer treatment has had time to work. For them, getting that emotional roller coaster on a slower, less terrifying track, can mean the difference between trying to survive and abandoning all hope.

We should always strive, as cancer caregivers, to err on the side of being human. We should ask ourselves about how much we know of our loved ones, how they best function, what matters to them. Our goal is to enable them to be true to their real selves through the cancer experience, and how we get there is important. We should never just give lip service to cancer patients. Our words should matter. But even more important, our actions should speak volumes. Every move we make should send the message that we stand with those we love and we are willing to go the distance to get them the right kind of care that will make the most difference for them.

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How Can You Keep the Hope Alive During the Dark Days?

Cancer caregivers have a tough job, especially when things aren’t going well for a loved one. How do you make empty promises to someone who is clearly struggling to get through the pain and frustration of cancer care? The truth is you don’t.

One of the hardest lessons for any cancer caregiver to learn is that you don’t lie about life. For many cancer patients already frustrated and feeling betrayed by the disease, pretending that everything is hunky-dory is just the final straw on that camel’s back. It’s enough to send a cancer patient into the bluest of funks. So, what can you do?

Sometimes, when the elephant in the room is squeezing everyone against the wall, it’s best to change your focus. Instead of looking at what cancer is doing to your loved one, instead of feeling every ache and pain that cancer is causing — be it physical, mental, or emotional, it’s time to take a step back and look at something else. What is that something?

Your loved one still has dreams, wishes, and goals. He or she may have hit a temporary rough patch or is at a more critical stage in the disease, but don’t let the disease define your loved one.

Hope is more than just a wish that a loved one is cured. As humans, we don’t have that kind of power — it’s out of our hands. Hope is that little seed in each of us that love is greater than the sum of our parts. We need to constantly nurture hope in meaningful, realistic ways, not as some giant magical force that creates miracles, but as the human means to achieve little milestones that keep us going.

Focus on three things.

1. Comfort — not fake smiles and cheerful claims that everything is going to be okay. Get busy with palliative practices that improve how your loved one feels. If your loved one needs pain medication, oxygen, or better nutrition for the body, make that happen. When you do this, you send a very strong message that you are there for the long haul, and you are going to get busy doing what needs to be done. No empty promises from you — you’re on the job and you’re staying on top of things. For someone going through cancer, that can be so reassuring. The more comfortable your loved one is, physically, mentally, and emotionally, the better he or she will do, no matter what the circumstances. You may not be able to cure cancer or the side effects of cancer treatment, but you can and should provide comfort measures that make life better.

Build bridges between how the cancer affects your loved one now and what life was like before cancer. The better connected your loved one feels to his or her true self and the way things used to be, the less impact that cancer will have on quality of life. It’s a lot easier to remain hopeful when you find some successes that remind you of what life was like before cancer reared its ugly head.

Chemo brain a problem? Try chair-side notes, a message board, a calendar, and electronic reminders to help your loved one stay on task and avoid the embarrassment and frustration of forgetting. Make dictionaries available for crossword puzzle affectionadoes, suspend the rules and score keeping on games like Scrabble while you work together to find possible words, and provide tools such as calculators or financial software for checkbook balancing and money matters. Gently encourage memory to return while assisting with the (hopefully) temporary mental deficits, using tools and organization. Remember that the nervous system often gets battered during cancer treatment — never chide your loved one for forgetting something. Most of all, realize that many medication errors occur when a loved one is impaired by the effects of chemotherapy and stress. When you can negate as much of the difficulties of cancer with supportive measures, you are actually helping your loved one to remain hopeful that life is still worth living.

2. Caring — I’m not talking about your feelings, cancer caregiver. When your loved one is struggling, it’s not about you. Find out what hurts. Find out the options for fixing that. Sometimes the grief, the fears, and the uncertainty of cancer make our loved ones hurt more than the disease itself. Be sure to be a good listener for your loved one. Get to the heart of the problem, whether it’s pain, frustration, depression, or even concern for the future. When you listen to your loved one and hear what’s really troubling him or her, you’ll be able to show you care by taking steps to make positive changes. That’s empowering.

Sometimes the big problems can appear to be insurmountable, but if you tackle those little ones, it all becomes more manageable. Medications, side effects, new symptoms, and the great unknowns cause tremendous stress for cancer survivors, and that stress can actually bring life to a screeching halt. Break the problems down one at a time. Chip away at them. Consider there may be more than one option to address each one. When you lead your loved one to possible solutions and you show you are committed to meeting these challenges head on, you inspire hope in you and your loved one by demonstrating how much you care.

Whenever you’re overwhelmed with your own emotions, take it outside. Step away to do your crying. Do not share all that grief with your loved one. No cancer survivor needs the guilt or frustration of knowing that his or her disease is causing you misery. He or she is already over-challenged. Find caregiver buddies as your sounding board, in person, on the phone, or even via email and instant messages. Join a support group or reach out to other people who have been touched by cancer and ask for advice in coping. You probably already know people who have been cancer caregivers. Most of us understand the pain and we want to support you because we’ve experienced it first-hand. Ask us.

And if you find yourself sinking in quicksand, consider seeing a health psychologist, someone trained in helping families cope with serious medical issues. Some caregivers avoid talking to professionals, thinking they’ll be told to quit their caregiving because they’re so overwhelmed. A wise health psychologist can help you navigate through your need to provide care, the emotional entanglements that result from the difficulties you experience when having to provide it, and help you find ways to manage that care better.

3. Communicate — Understand and appreciate that you’re just one person. You should never be “It” for your loved one, especially if you’re physically, mentally, and emotionally up against the wall. Create a support team of people who can fill in the blanks, big and small. Don’t cut yourself off from the outside world. Give people the chance to do for you and don’t feel guilty that you need that help. Caring folks want to participate, to be there with you. You’ll have the opportunity down the road to give back.

Consider having a caregiver blog that allows you to share what’s going on with friends and family. here are just a few organizations that offer free websites and blogs to families during medical crises.

Having a private opportunity to inform people who care about what’s going on means that you and your loved one are not alone. You can receive messages, photos, and offers of support in ways that you can utilize, even when you feel stuck at home.

Best of all? When you keep family and friends involved in your loved one’s situation, they have the opportunity to share with you how much they really care. Even though you may find your fair weather friends all but evaporate during your loved one’s cancer treatment and management, you will find those gold and silver folks who offer encouragement, inspiration, and love to get you and your loved one through the dark days. Knowing that people are thinking of you as you struggle is important. It’s too easy to fall under the wheels of the cancer bus and feel like a victim when you’re cut off from the rest of the world. Even when things aren’t going well for your loved one, having people invested in both of you reminds you that love helps heal all wounds, because it encourages us to believe there can and will be brighter days ahead. That’s what hope does for cancer families.

For more help with cancer caregiving, visit The Practical Caregiver Guides

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Can We Improve How Men Provide Care to Cancer Patients?

I’m a big believer in men. They can do some amazing things. Lord knows they’ve achieved some wondrous feats in life. But when it comes to being cancer caregivers, let’s just say the jury is still out on that, especially when it comes to women and “intimate cancers”, like breast, ovarian, cervical, and even colon. Nothing breaks my heart more than to hear a group of breast cancer survivors talk about the rejection they experienced from the men in their lives. It makes me want to go out and rattle some cages, asking, “What the $#@&* is wrong with you? How could you do that to her? Don’t you know how fantastic she is?”

Why is this? I have my own theory. We are, by nature, sexual creatures. We imagine, we fantasize, we dream of those perfect moments on some sun-drenched beach in the middle of nowhere, where wrinkles and cellulite don’t exist and “close encounters of the flesh kind” lead to wild and crazy passion, legs up in the sand. Real life very often doesn’t look like that. Emotions can get messy, especially when cancer’s involved and there’s great uncertainty in prognosis and diagnosis.

As a family caregiver, I’ve seen both sides of the story and I’ve reached a conclusion. Men are capable of doing more to really support the women they love and women need to appreciate that men provide that care differently. What does it take? Education on both sides. Best time to do it? At the beginning, in the early days of treatment.

Men need to know what the women they love are facing. How do they get that information? Let’s be honest. Most guys aren’t going to go to support groups to sit around and listen to emotionally-charged conversations about cancer. By nature, men tend to be proactive when it comes to problems. They’re constantly on the prowl for fixes. Cancer? Not always turned off at the flick of a switch. You can’t do X and be sure you’ll get Y as the result. You can knock your head against that tumor till the cows come home and you won’t put a dent in it. While most men are action-oriented, cancer support for women is often far more emotion-oriented. It can feel like oil and water mixing. Someone’s bound to slip on that slick and get hurt.

Men often process information and situations very differently than women do. Maybe that’s our biggest mistake as women, that we assume if men really love us they’ll do things our way, to please us. As someone who used to work with male psychiatric patients, I can assure you that it’s a hurdle not really worth the effort. The human brain is what it is. It’s wired as it’s wired. You can’t suddenly change the system. If the connectors and receptors in the brain don’t work that way, no amount of wishing will change that. Men are what they are, just as women are what they are. Your relationship up until cancer hits is pretty much what you might expect through treatment. Some men are talkers, but most aren’t. If the man who loves you does for you, you can probably go on expecting that. But if the man you love tends towards narcissitic behavior, if you have to fight your way to the mirror every morning, cancer’s not going to improve that, and your body image is probably going to take a hit over it.

We can and should take advantage of the way men tend to think to improve how they care for the women they love. I know a lot of men who are “hunters”. They may not sit around talking about their wives and girlfriends going through cancer treatment, but they will and do go on the Internet in search of information and answers. They will and do read personal accounts that provide a lot of technical information and concrete advice on what to do and how to get through it. Men need proactive tips and encouragement for helping their wives and girlfriends through cancer.

In other words, maybe it’s time we “train” men to be cancer caregivers according to their learning styles. Perhaps by taking an overwhelmingly emotional approach, we’ve failed to tap into the strengths that men can and will bring as cancer caregivers. Men are, by nature, usually good at “survivor” mode. They are body-observant. They eat, sleep, and hunt for what they need to live. Cancer is a very emotional disease and very often our introduction to it is chaotic and confusing.

What if we could reach out to men in the early stages of providing care and help them to find concrete ways to do it, ways in which they can make a positive difference for the women they love? I’ve had more than one man tell me over the years that women should never pay as much attention to a man’s words as his actions. Men will often say what women want to hear in order to get what they want. In cancer care, that’s not always a smart move. Women can feel tremendously betrayed when the words are hollow and empty.

In my conversations with men over the years, I’ve drawn a conclusion that may come as a shock to any woman who has felt her man didn’t care. Men care profoundly, deeply, sometimes even madly about the women they love and even the women in their families. But cancer makes men feel utterly powerless, and men don’t normally do “powerless” well.

I’ve seen that frustration up close with a man whose sister had a double mastectomy. His anger, his rage at what she went through in battling the disease was close to the surface. I could observe how raw this wound was for him. Why? Because he was so used to being a protector, the big brother who always looked after his baby sister. There was little he felt he could do for her as she faced this nasty foe. This caring, compassionate, strong man didn’t have the tools he needed and it infuriated him. It wasn’t that he didn’t care, it was that he cared so much, it was overwhelming. What happens when men have a much more intimate relationship with the women they love? What happens when husbands and boyfriends face that same powerful wall of emotions? Very often, as a matter of self-preservation, they turn off their emotions and just move on automatic pilot. That can come across as cold and unfeeling when the truth is they care too much to let it out.

I’ve heard women express their disappointment in how husbands, boyfriends, and even male relatives deal with their cancer. I definitely get it. Every woman wants to believe that no matter what happens to her, the men she loves will stand by her through the battle. So, how can we make that happen better?

Maybe we need to dispense with the myth that men and women aren’t equal as family caregivers. Just as male nurses and female nurses are equally capable of providing quality care in the medical setting, and male and female physicians must handle the same physical patient issues with equal competency, there’s no reason men can’t be wonderful caregivers. I still think that the style of care tends to be different, with some basic shared traits. Just as we used to assume that all women make great mothers, cooks, and homemakers, we have learned that’s not the case. Women aren’t born to be good with kids. It takes experience and education. Many of the women in my generation grew up taking care of siblings, neighborhood kids, and even worked jobs as teenagers that put us in the position of having to cope with runny noses, wayward children, and unexpected disasters (Lord knows I’ve pulled my share of kids off of roofs and stopped some of the world’s dumbest stunts just before that final idiotic ride off the ramp). We tend to forget that we learned how to care for the people around us. By the same token, I’ve known some women who were absolute disasters as caregivers. They were so anxious about their own needs, they weren’t capable of nurturing another person. A good caregiver is strong, with a thick skin, a hard head, and able to weather the storm, but you get that way by training, not by chance.

What does it take to be a family caregiver? Education, not estrogen. An understanding and an appreciation of what men and women can and can’t do. We should utilize men in the caregiver situation according to what we can teach them to do better. And we should recognize that, while they have strengths that can and will support women with cancer, they are not going to suddenly sprout wings and turn into cancer angels.

One of the things I always try to emphasize as a caregiver educator is that every patient needs to bring a team to the caregiver table. Every member of the caregiver team is going to be different from the other people involved, and folks will bring what skills they have to the table. The trick is to use the raw ingredients to make a complete meal, and that often means gaining new skills as you go. It’s important to recognize that every patient is different because of diagnosis, prognosis, energy level, independence level, emotional quotient, and a myriad of other factors. But if we begin to understand how to teach men to be better caregivers, not by trying to turn them into the female equivalent, but by using them in ways that make sense according to their capabilities, we should be able to produce some amazing male caregivers. It’s all about bringing out the best in the men who will care for these women with cancer.

Bottom line? We have some amazing wives, mothers, sisters, cousins, neighbors, and friends who have the capacity to survive cancer, and we should all strive to make the quality of their survival the best it can be. There are a lot of good, decent men out there who feel completely lost in the cancer fight. We can and should give them directions on what they can do better to support the women they love, through educating them in ways they can utilize to connect physically, mentally, and most importantly, emotionally. There will always be men and women who live life superficially, who can’t get past the scars, but for those people who hold promise as cancer caregivers, let’s empower them.

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Does Motivation Matter in Cancer Management?

Recently I got a comment from cancer caregiver who was finally able to come to terms with a friend’s death following a long battle with the disease. It raises an important issue, one that deserves some serious consideration. What happens when a cancer patient gives up the fight?

I remember when my very frail mother was facing cancer treatment on that first day. The radiologist gave her a lecture, in the kindest possible terms, that set forth an important reality. Unless she was willing to do the work, there was no point in him treating her. Sounds cruel? It was actually a positive thing to say to a woman who was struggling with her feelings about having cancer. He put her in the position of deciding whether or not she wanted to fight. That was very empowering for her, because it stripped the cancer of all control and returned some of it to my mother. No one could do the work for her. We could only support her.

He also said that she had to treat eating as part of the prescription for improving. Just as she would expect to take a pill because it would make her better, she had to force herself to eat, even when she didn’t feel like it. We worked hard to find foods she could tolerate, and in those moments she balked at just one more bite or one more sip, I would simply remind her that it was good medicine for her. “The doctor said….”

My mother did improve. Despite many complications, she outlived her prognosis by several months, time she used to get her affairs in order, to finish what mattered to her, and to decide when she was ready to stop fighting. And in between finding out she had cancer and succumbing to it, she managed to fit a lot of living into her “to-do” list. You can really only enjoy life when you appreciate it.

Cancer patients often have mixed feelings about what to do when they receive that dreadful news. That’s certainly understandable. It’s a scary road. Some cancers are treated aggressively and the course can be difficult to endure. Patients have to be committed to doing the work involved.

As cancer caregivers, it’s important for us to understand the issues involved for our loved ones. What is the treatment? What does it take to optimize the outcome? And what happens when a patient begins to give up?

Not every cancer patient has the same tolerance level for treatment. Some patients are tougher, hardier than others. Some are too timid, too ready to quit when there’s a light showing at the end of the tunnel. And some are just plain tired of fighting, especially after the years begin to add up.

If you find your loved one is feeling like it’s time to raise the white flag, you need to take a hard look at what’s going on. Are there new symptoms popping up? Is depression sapping your loved one’s energy? Is the treatment too harsh for your loved one’s battered body? All of these things can affect a loved one’s motivation to continue the battle, but not all of them are necessarily physical limitations to how far a loved one can go in continuing cancer treatment.

First and foremost, what’s really at the heart of your loved one’s fears? If it’s a physical issue, it needs to be addressed by the medical team. Some drugs aren’t well-tolerated by patients, and rather than stick to the course, it’s likely the oncologist can make a change and improve your loved one’s comfort. When comfort improves, motivation often goes along for the ride. Sometimes, if a new spot of cancer pops up, it can be easily treated, but only if the cancer team knows about it.

But when it comes to the spirit, things can become very complicated. A good cancer caregiver is an advocate for positive action. Sometimes that means hearing what the heart is really saying. You can’t help your loved one fix what’s broken if you don’t understand what the problem is. Any cancer patient can feel overwhelmed at times by the disease and its treatment. Even without cancer, some people find life challenging. Knowing the difference between a blue funk and something more serious is important. We cancer caregivers walk a fine line when we encourage a cancer patient to go on struggling in the face of overwhelming hardships. In the end, it’s really the cancer patient who decides when enough is enough.

That said, it all comes down to more than just motivation. It also comes down to finding the best treatment options for a patient who is willing to do the work. Cancer treatment is work. Some things have to get done. Compliance with chemotherapy, radiology, surgery gives a patient a better chance to make it through to the other side.. Good nutrition to maximize treatment options and minimize side effects means a patient is going to feel consistently better than someone who doesn’t make the effort. But most of all, knowing that the treatment options were thoroughly vetted means a patient is likely to remain motivated to get through it. We hear that phrase a lot, “the best doctors”, but there’s a good reason why it’s important to seek the best medical care you can find. Those “best doctors” are up on the latest treatments, the clinical trials available, and the options that offer the best hope. And without hope, it’s hard for a patient to stay the course in cancer treatment.

Hope isn’t something borne of magic fairy dust and imaginary vibrations. Hope comes from a deep-seated belief that what is being used is tried and true. It doesn’t involved guess work or experimentation. Hope is all about “this is what has been shown to be the most effective way to treat this situation”. When you and your loved one take the time to to do the research on what’s available, it’s much, much easier for you, as cancer caregiver, to help your loved one stay motivated, even on those tough days.

Think about that. If your loved one doesn’t believe that what he or she is going through is going to make a difference, it’s more likely that your loved one will surrender when the going gets tough. Like the Little Engine That Could, your loved one has to feel that “I think I can, I think I can, I think I can…” until it becomes “I know I can, I know I can, I know I can….” We’re all human, and we all sometimes cave into our emotions, ignoring physical evidence because we feel something. That’s why, when motivation starts to slip, it’s important to help a loved one focus on the facts. What do the tests show? What’s the normal course of action? How long does it take to notice positive results? Start with the best medical doctors and the best medical treatments to insure that your loved one remains motivated throughout treatment.

Each of us wants to feel that life is worth living because that’s what gets us out of bed in the morning. We normally look forward to the start of a new day because we’re motivated to make the most of it. Sometimes, when cancer totally overwhelms the body, mind, and spirit, it rob us of that joie de vivre. If your loved one is struggling to find a reason to go on fighting, don’t despair. One way to recapture some of that motivation is to put the cancer aside and just live like it’s not there. Make a habit of ignoring cancer at least once a week. Start small, an hour at a time. Build it up until you have a “cancer-free” morning, afternoon, or evening, not because you’re in denial that your loved one has cancer, but because it will give your loved one a chance to let go of the disease for just that little while and practice living again.

If you find that he or she is unable to do this, it may indicate that it’s time to speak with the medical team about options, such as a session with a health psychologist, someone who understands that disease affects the psychological health of patients (and sometimes caregivers). Living with cancer is important. Otherwise, your loved one is just surviving, and that’s no fun. Carpe diem!

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