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.
