Category: cancer caregiver

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cancer caregiver cancer treatment caregiver education caregiver psychology Caring Bridge My Life Line Post Hope What Matters Now

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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advanced breast cancer breast cancer cancer caregiver caregiver education caregiver psychology family caregiver ovarian cancer

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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Bob McClendon cancer caregiver cancer nutrition Cancer Treatment Centers of America caregiver education CTCA Blogger Summit Frank Caputo Hope Springs Organic Farm McClendon Select organic farming

Getting Down on the Organic Farm with Cancer Treatment Centers of America

How many cancer treatment centers can boast they have a Culinary Institute of America chef like Frank Caputo? Better still, how about an organic farm just out back of the hospital? Cancer Treatment Centers of America can. The Western Regional Medical Center in Goodyear, Arizona has both. I got an up close look at the operation while at the CTCA Blogger Summit.

Bob McClendon, a former pharmacist-turned-organic farmer, is in charge of Hope Springs Organic Farm, a 25-acre spread. As you stand looking over the fields, you can see the neat rows of vegetables planted by son Sean. It’s very much a family business. (Daughter-in-law Kate is also involved. She writes a nice blog on organic produce http://mcclendonsselectblog.com/ )

On the day I was there, Bob’s grandson was riding his bike through the property, even as the GPS-equipped tractor was zipping along. The GPS helps Sean plant straight rows — the McClendons take their organic farming very seriously. Every drop of water is monitored and utilized to prevent waste and to nurture the tenderest of vegetables under the hot Arizona sun.

Chef Frank Caputo is the real genius behind the farm. He pushed Bob to join the endeavor. From what I saw, it was well worth the effort. Frank was more than happy to offer a cheddar cauliflower to pass amongst the crowd. He also grabbed a handful of assorted greens, the very produce that would go into our buffet lunch.

What surprised me most about Hope Springs Organic Farm is the size of the operation, even in its early stages. When you look out of the rows of plantings and then you step into the dining room, you don’t have to worry about how long the vegetables have been stalled on a loading dock in some warehouse. This is freshness at its peak. Visitors are welcome to walk over to the farm, and when we were there, I saw folks do just that.

The lunch we were served was impressive, from the grilled cauliflower to the Swiss chard salad to the healthy smoothies. Clearly Frank Caputo and his team work hard to make sure patients, staff, and visitors eat well.

Just to be sure, I took a tour of the “food court”. I wanted to see how other people were reacting to the offerings. At a large salad bar well stocked with choices, a young boy of about ten loaded his plate. (As a salad affectionado, I can attest to the fact that the salad bar meets with my approval.) He clearly had eaten here before, because he was determined to get “the good stuff”. The number of food stations and choices was impressive. A number of staff members and patients were ordering specific items.

What I loved best? One of my fellow bloggers (currently a patient at the hospital) can’t digest certain foods while she’s undergoing cancer treatment. Frank’s right-hand man brought out platters of steak and chicken to make sure she had the proper nutrition.

One of the toughest things for cancer patients in treatment can be the nutritional issues. Food can be a struggle to get down. That’s where Director of Nutrition Sharon Day comes into the picture. She works with patients and their family caregivers to offer choices at the hospital and at home that will meet with the patient’s palate and ability to handle the heavy lifting. The truth is not everyone has Chef Frank Caputo’s skills. Sharon is more than happy to offer recipes, tips, and ideas for the amateur and the experienced. She helps adjust the diet to accommodate the medications used and the patient’s ability to swallow, to digest, and to take in enough calories to handle cancer treatment. One of the biggest issues for cancer patients is getting the right nutrition that will enable cancer treatment to work effectively. That puts her on the front line of every patient’s medical regimen at CTCA.

The attention to detail at CTCA is very impressive from what I’ve seen so far. I’m comparing it to other cancer treatment facilities I’ve experienced as a caregiver and as an educator. But I think it’s the staff that stands out the most. People really do seem to enjoy their work, right down to the sweet young woman in the ladies room, who cheerfully answered our questions about a lotion dispenser on the wall. This is very much a “people place”. It’s not going to change the fact that cancer is cancer, but it could help you endure cancer treatment in a much more pleasant atmosphere.

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advanced breast cancer breast cancer cancer caregiver cancer treatment Cancer Treatment Centers of America CTCA CTCA Blogger Summit Goodyear AZ service dogs Western Regional Medical Center

Cancer Treatment Centers of America Honors Service Dog Pee Dee

I admit it. I’m a people watcher. I like to get the feel of a place by observing the comings and goings of people. At the moment, I’m at the Cancer Treatment Centers of America Bloggers’ Summit at the Western Regional Medical Center in Goodyear, Arizona. During a break in the many presentations involving cancer technologies, I stepped out into the lobby, sat down, and just watched the passing parade. I wasn’t expecting pooches in service “uniforms”.

I had already found the two fish tanks flanking a big fireplace on my first visit. Fish gotta swim and they do here. The bright colors attract the eye and draw you in. I always like to see signs of life in a hospital, and that was a positive impression of the Western Regional Medical Center in my book.

 

But yesterday, on my second day here, I saw something I never thought I would see — a retirement party for a dog. Pee Dee, the chocolate lab, was hanging up his hat as a service dog at the hospital.

All the other dogs were there for the party, some frisky and tail-wagging, others gently awaiting your approach. It was a nice bunch of pups, and it was clear from the reactions of the people passing by that these dogs were well-loved, by patients, by family members, by staff.

I watched all the hands come out to greet the dogs. Some people stopped and bent down to say hi. Others gave an affectionate pat or a little scratch behind the ear in passing. The ladies who accompanied the service dogs were cheerful and kind, too. It gave the lobby of the hospital a friendly feel. This is no cold, sterile medical environment. And all that was before the party started.

It was held outside, in the courtyard, a space filled with barbecue grills and benches, just off the sports area, where a putting green awaits. (The current LPGA champs have nothing to fear — it took about 50 shots to make my only hole-in-one of the day….) There was cake, a small ceremony, and lots of chuckles and cheers for Pee Dee.

Why do I write about a retirement party for a service dog? That’s what you get at the Cancer Treatment Centers of America facility here in the Arizona desert. People who stop for ten minutes to thank a pup who has cheered patients through the cancer treatment process. It’s about connecting to life, to the little things we can and should celebrate together. Warm hands, warm hearts help cancer patients get through the challenges of cancer treatment, but they also get the staff through, too.

That’s why I like to just sit sometimes and observe, especially when I’m in a new place. I don’t want people to tell me what it’s like to be there. I want to see it for myself. I want to watch what patients and family members do, to see their reactions to a place. Are they comfortable or miserable? You can see cancer patients in the garden, sitting at tables in the shade, enjoying the day, or wheeled out in their wheelchairs by loved ones. This doesn’t feel like a hospital, even though I know it is. It’s a place where patients can take a break and get outside on a pleasant day — Arizona has a lot of those at this time of the year. It’s a place where even a dog like Pee Dee gets his due.

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cancer caregiver cancer management Cancer Treatment Centers of America caregiver education CTCA perception personality

What Roles Do Personality and Perception Play in Cancer Treatment?

Is cancer a case of mind over matter? Can we engage one to more positively affect the other? And if so, what roles do personality and perception play in cancer treatment?

Here I am in sunny Goodyear, Arizona, at a Bloggers’ Summit sponsored by Cancer Treatment Centers of America. The weather is fabulous, especially given all the chilly winds and white snow I left behind. Last night I sat out under the stars with the group of fellow bloggers, almost all of them cancer survivors. We laughed for hours, sharing stories. There wasn’t a Shrinking Violet or Vinny among them. Each has his or her own story about cancer, and in coming together, it was an engaging banquet of food for thought.

Which makes me wonder about the power of personality and perception in fighting cancer. We can’t really change personality. People are who and what they are. Each of us sees the world in unique ways, and once you understand where we’re coming from, you can adjust your message to be better heard. But it’s never one-size-fits-all. Men and women tend to process information differently,but within that construct, individuals are sometimes stronger in some areas than others. When I say the word “cancer”, your perception of the disease is based on your own personal experiences with people you know who have battled it, but also on what you know about the public information that’s out there. What pieces of the puzzle are you missing? What you don’t know can and will hurt you and your loved one, especially if you’re wrong in your perceptions.

As a cancer caregiver, you can’t change the personality of your loved one, nor should you, but will an understanding of him or her help you provide the right kind of support? It makes me wonder if there should be a different approach to cancer for a Type A personality than for a Type B personality. Maybe people who are go-getters will do better if they are armed with information they can use to motivate themselves — statistics, goals, and your basic business plan. That’s just how they roll in real life and we should respect that. Maybe people who are go-with-the-flow-ers will do better if they are allowed to function in the way that enables them to do what works for them — forget about the details and the Devil, and just live in the moment. That’s how they do things and there’s nothing wrong with that. To each his own.

Over and over again last night, I heard a similar theme. Cancer patients and survivors get treated differently than people without. Right there, you know that’s going to have an impact on life. We aren’t at the point where we ignore cancer once it’s happened. It’s like stink on a skunk, trailing behind the cancer patient. One whiff and folks disappear. The last thing anyone wants is to feel people pulling away emotionally, mentally, and sometimes even physically. That’s a lot of stress to live with when you’re already trying to get back to the new “normal”.

What does it take to rise above that and engage the mind in the healing process? If you think about the role the brain plays for the human body, it’s really a head game in many ways. The head operates the rest of the body systems, so tapping into that energy and directing it in positive ways should make a difference, shouldn’t it? If it’s the head making the decisions about what happens, how does the brain move through the decision-making process to the best advantage?

We sometimes seem to forget the brain is divided into two hemispheres, right and left. Concrete and creative. That’s where perception comes into play. Perception is information-based.  And when there’s a lack of information, the creative brain will fill in the blanks. That’s sometimes dangerous, because we can begin to believe things that just aren’t true. The body will act on the misperception. If you input more information and expand the knowledge of a subject, the brain will adapt to accommodate the change, but only when there is recognition things have changed. The mind has to send a signal — “Hey, guys! We’ve got new intelligence on this thing. Look it over and make adjustments.” The more you know that is evidenced-based, the more rational the decision-making. You can actually change a person’s emotions by changing his or her perception of the subject. All the more reason to make a positive effort. So, what does happen when you have strong personalities that can weather the storm and see beyond it? That’s when your mind works with your body to overcome the challenge that is cancer. You have to believe that what you’re facing is “doable”, and even more importantly, worth doing.

The people I sat with last night are the living proof the battle is worth it. Vibrant and alive are two words that describe them. But their cancer experiences surely played a role in awakening the personality to take on the fight. For several people, it seemed that cancer put a focus on their lives they didn’t have before. They no longer waste time on people who waste life. They take more chances because they want the chances they take to mean something. They live a far more intense experience because of cancer, not in spite of it. Maybe they would have done the same if their lives had been challenged by some other life-transforming moments, because it would have given the personality a chance to strut its stuff. In that sense, it’s the challenges, not the cancer, that benefited the individuals.

Maybe the more we understand how cancer works, the better we can teach cancer management. We can begin to understand that cancer didn’t just appear over night. It took it’s time setting up shop in the body, hiding out, lurking. When the concrete mind begins to pay attention to new symptoms, when the creative mind begins to believe it’s possible to change the outcome, won’t the mind be better able to direct the body to focus on what’s important at each moment in time, whether it’s taking the difficult cancer treatment that will make a difference or learning to relax and not let the fear fill your head?

A house divided can’t stand. The structure, the foundation, will eventually fall. A cancer patient at war with his creative and concrete minds will be struggling to understand what the immediate picture is and what the future picture can be. What you believe about cancer is every bit as important as the scans, blood tests, and other measures of the disease within the body. If your perception is based on a fantasy, that cancer can be wished away magically, the concrete mind isn’t likely to buy that claim. If it’s based on evidence that what is done can and will have a more positive outcome, the creative mind can begin to look for ways to work with the concrete mind to get the body what it really needs. Does the personality help to determine how that perception plays inside the head?

As cancer treatments have evolved, our understanding of the types of effective medications, radiology, and surgery have also expanded. We know cancer isn’t one disease — there are hundreds of types of cancer. The more we hone how well specific treatments work on specific cancers, the better the outcome. I believe the same is true for the cancer survivor’s mind. The more we understand individual differences in human beings and how their brains process information on cancer, the better we can help and support our loved ones to fully engage according to their ability to perceive the disease. Some people are always going to want to know every little detail, others are not. When we respect our loved ones’ comfort zones and apply our care to fit their real needs, we’re giving them the real support that will help them face this foe.

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cancer caregiver cancer treatment Cancer Treatment Centers of America caregiver education CTCA Blogger Summit

Cancer Treatment Centers of America — When Opportunity Knocks

I’m a big believer in taking chances when the risks seem reasonable and the odds are in my favor. I’m not much of a gambler. I don’t play the slots or cards, especially not for cash that should go to pay bills. But I also believe that when opportunity knocks, it’s okay to answer the door, even if you check the peep hole first. That’s why, when Cancer Treatment Centers of America asked me to their Blogger Summit, I agreed to go.

I’ll admit it. I’m very curious about what CTCA does differently. I’ve looked at the website several times now, but I’m still not sure what to expect.

Cancer Treatment Centers of America

Most patients travel for treatment. The regional centers have accommodations for patients and family. They also have things like laughter therapy, a hospital garden, a very impressive nutrition team, and so many other things that I believe can be therapeutic for cancer patients and their families.

What does CTCA do for family caregivers? That’s what I want to know. I have a theory that if you educate a family caregiver to take care of a patient with the best information and support, if you give that person the physical guidance and support he or she needs to help a loved one get through cancer treatment, there’s a far greater chance that the patient will comply with medications, nutritional intake, pain management, and stress reduction. But it’s more than just a bunch of social workers and nurses giving lectures in a hospital setting. It’s networking, hooking experienced caregivers up with newbies, offering insight and inspiration for everyday life. It’s a cup of coffee and a shoulder to cry on. It’s someone who understands that it’s frustrating not to be able to get everything done on a to-do list because there are so many priorities and everyday issues get kicked to the curb.

Every time I’ve checked on this hospital or that hospital, it seems like the caregiver education just isn’t available. There might be little meetings here and there, but no real concerted effort to hook caregivers up in a  meaningful way that makes a real difference. You can talk about stress reduction all you want, but in a business that provides paid services, many health care providers would rather collect fees for fixing you than preventing you from breaking down in the first place, and that’s a shame, because many caregivers burn out too soon. Maybe CTCA is different. Maybe they have a structure that supports a caregiver outside the hospital setting. We’ll see. If they don’t, maybe they’re open to starting one.

What most medical people don’t understand about family caregiving is that it’s really not about medicine. It’s about people. What does it take to help another human being survive under difficult circumstances? How do you manage a household while helping a loved one undergo some of the most rigorous medical procedures available? Most family caregivers learn through the School of Hard Knocks, when mistakes are made. The longer you’re a caregiver, the more opportunities you’ve had to learn. Me? I should have a PhD. in caregiving. Lord knows I’ve seen my share of challenges. But I also believe that caregiving can be and should be taught.

If I could make one thing happen for family caregivers taking care of cancer patients it would be this — a study to determine if caregiver education can actually reduce mistakes and improve cancer patient outcome. I’m not talking about some touchy-feely, “gee-aren’t-we-swell” kind of study. I want to know if the right caregiver education can actually improve survival rates. Can we prevent unnecessary suffering and medical complications by teaching family caregivers to help manage care at home?

Sound crazy? Well, think of it this way. The greatest problem for most cancer patients isn’t that the cancer sneaks up on them overnight and steals their lives. It’s getting through the long haul. And to do that takes good medicine, good support, and good caregiving over time. Rome wasn’t built in a day, and cancer isn’t cured instantly. There’s no magic wand.

I’ve heard so many family caregivers say they were terrified, didn’t know what to do, didn’t know where to turn for answers — not for the medical issues, because most health care providers are good at helping with that. No, what I hear most from family caregivers is they didn’t know how to get it all done — the “living with cancer” part of things.

Living with cancer is more than just those trips for treatment or the instructions on how to apply lotion to radiation burns. It’s about understanding what disease does to a person, to a family, changing the dynamics in so many ways. Up until that diagnosis of cancer, life seems simple, and after those words are spoken, it’s forever changed. That’s because you often feel you’re living in the shadows until those scans show no more evidence of the disease. Borrowed time and uncertainty seem to become the norm for many cancer families, and it’s really tough to cope with that on a daily basis for any length of time. If you’re not used to running and you suddenly enter a marathon, you will fail on so many levels and put yourself at serious risk. Training matters.

So, how does CTCA reach out to family caregivers in a meaningful way, above and beyond holding hands and commiserating with them? What education do they offer in terms of helping family caregivers organize daily life around cancer treatment and balance family needs, so that the cancer is not the focal point of every conversation?

Maybe this is an opportunity for me to spread the word about caregiver education and the benefits of really supporting the families. I believe that family caregivers actually have the ability, with the right training, to not only advocate for their loved ones, but to be the eyes and ears for the treatment team, but only if they understand that responsibility. In order to do that, family caregivers have to pay attention to the physical signs they see and they have to be able to communicate effectively with the health care providers. If I’m right, that cancer survival can be improved by educating family caregivers, it will be because patients and their families feel confident that it makes a difference to take a proactive stance when it comes to cancer. A good part of the resistance to that approach is always the fear that families have that it’s too late, the cancer’s too strong. If CTCA accepts patients who are motivated to fight a survivable cancer, and those patients have cancer caregivers with real tools to help them get through it, maybe this is a part of the new cancer treatment horizon, that survival depends on what’s done for the whole person, and the better the resources, the better the outcome. I’m looking forward to finding the answers.

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

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cancer caregiver caregiver education caregiver psychology caregiver stress

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

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advanced breast cancer breast cancer cancer caregiver Cancer Caregiver Roles: What You Need to Know caregiver education Dr. John Garnand

Real Men Don’t Run — Dr. John Garnand’s Role as a Cancer Caregiver, Part Two

Part One — “Real Men Don’t Run”

This is a continuation of the February 28, 2013 interview I did with Dr. John Garnand, PhD, who cared for his wife, Susan, over nearly a decade as she faced breast cancer. If you missed Part One, I encourage you to check it out. Dr. Garnand brings a new prospective to caregiving that not only will open your eyes, but your heart.

Sara:

You really drill home the point for cancer caregivers that it’s critical to maintain records, not just to track a loved one’s health, but also to handle the financial issues. When you discuss the economics of cancer management, you point out there can be errors in billing, differences in insurance coverage in terms of out-of-pocket expenses, and even talk about how the loss of a salary during treatment can have a profound effect on the household. How did it help you as Susan’s caregiver to track so much information?

John:
 
First of all this is probably the most basic criticism that people make against our Healthcare System. Its accounting is impossible to understand and interpret. Errors occur. Everything is coded, and errors slip in.(See pp.56-57).  We were billed over a year later for a procedure (birthing) that was not possible for someone who had a hysterectomy.
 
Sara:
 
Yikes! It shows that vigilance is important when handling all the medical expenses. This is especially important for families handling diseases over the long haul, because every dollar counts. I think there’s a tendency for stressed caregivers to just assume all bills are legitimate.

John:

The tracking of information can be tedious, but occasions come up where it is the only way to forestall a real problem.
 
Sara:
 
But you’re not just advocating that caregivers track the financial issues associated with medical bills. You make a good point that caregivers have a very crucial job in helping their loved ones during treatment.
 
John:

Tracking of information is especially critical when the patient is left alone while her caregiver has to leave the home to go to work. It then becomes the patient’s responsibility to take the right meds, at the right times. We went to a family reunion in Illinois. It was a long drive. I had to wake her up to take her Tykerb (5 pills, hour before breakfast), and recorded the dosage consumed. She went back to sleep. She woke up mid morning, and rushed over “to take her meds.” She had forgotten we had already done so. These are chemotherapy medications, and an overdose could create toxic shock, or a fatal reaction. Luckily, I showed her the record.

My wife was consuming 16 different medications a day, at different specified times during the day. If we had not kept physical records I feel very certain we would have had to face a disaster from overdose.
 
Sara:
 
I found that to be true also, John. I had a system to make sure the right medications were given to my mother at the right time and in the right combination.
 
When a patient is taking multiple medications, it gets confusing for patient and caregiver if it’s not tracked. We tend to think we’re being overzealous when we start to record details of caring for our loved ones, but it’s really all about patient safety. Hospitals and health care facilities tend to be meticulous with their medication disbursement, to avoid medication errors.
 
Studies on home care have suggested that one in three patients is vulnerable and the risks increase with the number of medications used. For cancer patients who have “chemo brain” due to the neurological effects of the powerful drugs or who are under mental or emotional duress during treatment, having a caregiver manage the medications is a great support. It’s one less thing to worry about, especially if it’s difficult for the patient to concentrate on details.

 John:

Another aspect of record keeping is every time you go to a physician’s office for any reason; you are expected to fill out the patient’s medical history and medications.
 
Sara:
Having a copy of the current medications is absolutely imperative, especially if patients are seeing many different doctors. It’s important to make sure that everyone is on the same page. I also used to do this for my mother, and I found that adding the over-the-counter medications was important, too, since some of them interfered with the prescribed drugs.

John:

If you can record these ONCE ahead of time, you can run copies and include them with the required paperwork—saving time and frustration. This is the logic behind Exhibits 1a and 1b.
 
Sara:


A lot of men find it a daunting task to be caregivers for the women they love during cancer treatment. I think a lot of them feel powerless to have a positive outcome. Cancer is such a tough opponent. You clearly took on the role as Susan’s champion and tackled some pretty important issues as a spouse. I appreciated what you said when you talked about the importance of finding new ways to express intimacy and that cancer can “get in your face”. You sound like a man with a plan. If you were to coach a team of men who were thrust into the role of caregivers to the women they love, what would your pre-game speech sound like and how would you convince them they can get the job done?

John:
 
Wow, Sara! How on earth am I to answer this question? (A good thing.) You have correctly picked up on the underlying motivation I had when I wrote these parts of the book.

Women tend to have experienced some aspects of nurturing and caregiving in their experiences of managing the family and children. But men are programmed to the world of work, of competition, of fighting or sports. They are repulsed to change a dirty diaper. This has a cross-cultural aspect as well….as I have found out with my work on a Spanish translation of this Caregiver book. I really had the motivation to write this section to almost shame the blockheaded husband into a nurturing role.

I had the crazy idea I could make some headway by example, better than by argument.

Sara:
 
It’s understandable that men might be resistant to the idea of being caregivers for the women they love, but I think you’ve put yourself out there as a great role model. If you think about it, there’s really nothing “girlie” about the role of cancer caregiver. It takes strength and courage. So, John, how would you rally the troops?

John:
 
The pre-game speech would probably be like this—-This is not just her struggle, her fight. She needs her partner now. This requires a team effort, a team commitment. You are now involved in living out your vow to her—-“in sickness and in health” Now is where you live out “…it’s all about her.” Now is your time as well.

Sara:
 
It really is all about commitment, isn’t it? And teamwork. I think men need to know that this is a very noble, decent thing to do. It’s getting into the action, instead of hanging around on the sidelines. What else would you tell them?

John:
 
Now is your call—now is your challenge to live this out. This is the finest hour of your marriage. Now is where you man-up.

Sara:

And what would you say to the women in their lives who need care, who might be reluctant to trust men with the intimate issues of cancer and the tough side effects?

John:
 
I think the answer to this question is bound up in the quality of the marriage relationship. If the guy has always been controlling and estranged from intimacy, the patient may have a hard time with issues of intimacy, or side effects.

Our relationship was very different. I found out quickly that the more independent and free I could make her, and support her decisions, the deeper her love became, the deeper her response—because it was freely given. The “freer” the “deeper.”

Most relationships don’t go this far. In her words, we made a “….mystical, musical, magical life.” A life where we looked upon everything as an adventure, not just a journey together. Laughter, day and night. I guess, I hope that if we can model this kind of living, it would create joy in our world and spread to the community.

Sara:
 
Susan comes alive through the pages of your book, in the ways you describe her, and in the ways you describe your efforts to make her life as comfortable and meaningful as possible. She clearly inspired you to be a better man.
 
John:

When she died, a huge part of me died with her. I tell people, I would have instantly traded places with her if I could. I would have accompanied her to show her the way, but I could not find the Lilly pads on which to step.

I have been thinking about the Caregiver book. It was cathartic to write this book. I hoped we could help other cancer couples became ” …more loving and more proficient” in their care of each other (p.3). Truth is, I had to write this book. There was no noble or generous motivation. I had to alert people to the financial devastation that was staring them in the face, and I had to tell them her story, at least in vignettes. Maybe the next book should be autobiographical “Susan’s Story”.
 
Sara:
 
I’m looking forward to reading that. Obviously the two of you shared a lifetime of learning about each other, and cancer didn’t stop you from continuing to grow as a couple.
 
I think the problem for a lot of cancer caregivers is there is such a learning curve as they move through the process. Not everyone will immediately understand all the issues involved in helping a loved one get through it. Couples will face the disease together with the strengths and weaknesses they share, some more successfully than others.
 
John:

I guess I don’t have a real answer for you.  It depends….on a case-by-case basis. I have the hope that somehow, by the grace of God, the messages in this work will be useful to those who read it. That, in the final analysis, is all I can ask. My prayer for couples experiencing cancer, and traveling the cancer journey together, is for their peace.
 
Sara:
 
I think a lot of couples going through this journey will be heartened by your approach, John. It’s not only inspiring, but also very comforting for loved ones to know that there are steps cancer caregivers can take to provide comfort in many ways, whether it’s making sure that the roof stays over your head, that you’ve taken the right medications in the right dosage, or that there’s still some joy to experience in life. Cancer patients will appreciate your efforts to educate and inform spouses.
 
I also think that caregivers who are stumped on “What now?” will find some positive focus and be able to begin to develop a strategy, not just for the short-term, but also for the long haul, the “Where now?”.
 
You and Susan experienced the ups and downs over the better part of a decade, through the good times and the not-so-good times that cancer management brings. I think your ability to write this book is a testament to that dedication and commitment to each other. I hope you continue to share with cancer families.

Notes on John and his philosophy, provided to me for this interview:

John believes we become what we learn. He believes that no one is fully prepared when the comes to becoming a caregiver to a loved one who has been diagnosed with a major disease. He feels that Caregiving is “on-the-job-learning” which lead him to writing his book, Cancer Caregiver Roles: What You Need to Know. The book is his effort to pull together all the information that he has had to learn over nine years of attending to his cancer patient loved one. It is his hope that this compilation will make it easier for other Cancer Caregivers faced with similar circumstances. John’s loved one taught him everything in life that is important to learn. And he now believe that the acquisition of wisdom is just being open to learning, and that anything good that we have learned will never be completely lost.  In its existential context learning defines our lifetime.
 
Dr. John Garnand’s Cancer Caregiver Roles blog

About the author:

John Garnand has spent a lifetime as a teacher. Most recently, John retired from the Leeds School of Business of the University of Colorado at Boulder. For twenty-one years, he was an award winning instructor in the general areas of business strategy, management operations, ethics, and public policy. While at the University, he established the Multicultural Business Students Association, to help disadvantaged students compete and excel. Before this, Dr. Garnand held the position of Vice President for Administration at Regis University in Denver, CO. He was also a graduate faculty member in the Regis University Masters of Business Administration (MBA) program.

You can find John’s book at these retailers:

Amazon  Softcover $8.99 E-Book $3.99

Barnes & Noble   Softcover $8.99 E-Book $3.47

Kobo Books  E-Book $3.49

Google Books  E-Book $3.03

Balboa Press Bookstore  Softcover $8.99 E-Book $3.99

 
Categories
breast cancer cancer caregiver Cancer Caregiver Roles: What You Need to Know caregiver education Dr. John Garnand

Real Men Don’t Run — Dr. John Garnand’s Role as a Cancer Caregiver


Dr. John Garnand, PhD, author of Cancer Caregiver Roles: What You Need to Know, has spent a lifetime as a teacher, at both the high school and college levels. Through the years, John has taught business strategy, management operations, ethics, and public policy to a diverse student population, working to empower people through education. He cared for his wife, Susan, for the better part of a decade as she lived with breast cancer. Their relationship weathered the storm in ways that strengthened their commitment to each other, and after her death, John found his voice as a cancer caregiver educator. He has a lot to share.

 

In many ways, his background actually makes him a perfect candidate for the role of teaching cancer families to care for a loved one. He’s very focused on the financial aspects of cancer management, something I find refreshing. I’ve written before about my belief that we need family caregivers to understand that it’s important to control costs, such as out-of-pocket expenses and insurance benefits, for the long haul. Like any marathon, cancer management is all about pacing yourself so you don’t burn out too soon. You want to be able to maximize what resources, energy, and power you have in reserve, so you can use them to the fullest advantage. This isn’t a race to get to the finish line as quickly as you can. It’s about developing the stamina and the strength to get through a very difficult course as successfully as possible. But John’s book goes a lot further than just sharing insights into what it takes to be a good caregiver. He delves deep into the real difficulties of helping a loved one through all aspects of the disease and its complications.
 

He’s also very focused on doing right by cancer patients. In a field that’s usually dominated by women (given that so many of us are the default family caregivers), I was curious about what a man could bring to the caregiver table. For women who are struggling to figure out the hard realities (especially the money issues) involved in cancer management, John offers strong insight and encouragement. For men who are suddenly thrust in the role of caring for the women in their lives, especially those who have never been called upon to do this kind of thing before, it’s nice to have a peer who isn’t afraid to step up to the plate and hit a home run.
 

My goal over the last three years has been to create a virtual caregiver community, through my Practical Caregiver Guides website and associated blogs, to serve the needs of families, especially those who are managing diseases over time. So often, cancer patients who are treated in the early stages successfully return to active lives. For some, there is a period of remission, with occasional cancer treatments to keep the disease in check. For others, cancer becomes a progressive disease, one that becomes more and more debilitating as it advances. It’s critical to understand that there may come a time when the cancer patient has fought enough. That is not the face of defeat. It is not failure. We should always celebrate and appreciate the real triumphs in life, that we embrace love over bitterness, kindness over darkness, and we make our way down the sunny side of the street. The important thing in cancer management is to provide the cancer patient not only with the best physical care possible, but also with the best comfort, compassion, and companionship. We human beings are complex creatures. We may be made of flesh, but we have spirits that can soar or crash, depending on the air currents. Caregivers should always be the wind beneath the wings of cancer patients. It’s our job to empower them. In that spirit, I offer you the opportunity to meet Dr. Garnand. This is Part One of my interview with him.
 

Sara:
 

One thing I noticed is that you emphasize the importance of caregivers being eyes and ears for the medical team, in terms of reporting new symptoms, difficulties, and side effects. How did you come to embrace this concept and how important is it?
 

John:
 

CRITICAL! The assumption behind this idea is that the more that is known about the patient and the situation (context) in which she experiences her cancer, then the Physician (Oncologist) can make better decisions, more personalized decisions about the patient’s treatments. I believe one can improve patient care by improving patient caregiving (see p.2 of book)
 

But it is more than just treatments. If the oncologist can ascertain what is really going on with and within the patient, (s)he can make better medical judgments about what to prescribe.
 

Look at the example in the book (p.24 bottom). A medical study at Northwestern U. showed that patients tended to be “overly optimistic” about reporting their condition to the oncology team. We experienced this often. She was so tired of new treatments, new regimens that she would tell the oncologist she was doing better than the reality. Your role as Caregiver is to feed her whatever you can to maintain her strength, so she can tolerate the toxic drugs.

 

On one instance: I made her a bowl of oatmeal one morning with raisins and brown sugar. She took two bites, and pushed the cereal away.”It tastes like sand.” I was disappointed; I was trying to build up her strength.

 

Later, when she was asked at the oncologist’s office “how’s your appetite?”, she responded “Great. I had a bowl of oatmeal this morning.” I had to become the snitch…..because the doctor had to know. I will not forget the look she gave me.

 

Sara:

 

I’ve been in those shoes, John. It’s never easy to be forced to choose between that sense of loyalty and doing what’s best for your loved one. I found in my own case that I was often “toast” for a while, and eventually forgiven because the doctors were able to use the information to make my mother more comfortable. She came to appreciate the advantage. It’s part of the trust quotient in the caregiver relationship.

 

John:

 

Another example; end of life. The physician at the Hospital asked her “Do you want a pain pill?” She nodded in response. But I noticed she was touching her cheek. I had been her constant companion for the last five years, and I was able to differentiate between when she was feeling “pain” and when she was feeling “anxiety.” The treatment for pain (Oxycodone) is very different from the treatment for anxiety (Adivan – sedative). I went out in the hall and told the physician that what she was expressing was anxiety, not pain. I will not forget his look—like “who do you think you are!” The immediate response that welled up in my head was “Doctor, forty-one years trumps 15 minutes.” but I bit my lip. She did get the Adivan, and was peacefully content after the episode.

 

Sara:

 

That’s an interesting point, John, about the powers of observation and insight that a long-time caregiver often develops. I’ve heard the same thing from many others. We start to notice the subtle differences in how care is tolerated and what our loved ones are really saying to us because we learn to read between the lines.

 

John:

 

Also, if the Oncology Team perceives you have been doing your homework and understand the situation, I perceived they worked a little harder professionally. I think we got past a lot of fluff because of this perception.

 

I have heard it said, “When one of you gets cancer, both of you get cancer.”

 

Sara:

 

I know that you’re a long-time educator at the high school and university levels. You’ve also been a debate coach and a tennis coach. How did you utilize that experience in your role as a caregiver for Susan, as she struggled with breast cancer, and later, when the cancer spread?
 

John:
 

This is a hard question to respond to. When one finds out the diagnosis–“You have cancer”—everything changes. You enter a foreign world. The language is not familiar; customs and protocols are not familiar….I liken the experience to being expatriated to a foreign country (see p. 9).
 

I have tried to draw straight causal lines between who we were and who we needed to become. I came up with descriptions like the following. We were both teachers. Teaching has its own rhythms and disciplines. You learn to plan ahead, you think sequentially, you try to understand the material in a way that you can explain it in the Receivers’ terms, you work to anticipate questions, and you learn to respect deadlines and schedules. But somehow, none of this really applies to the magnitude of the diagnosis. All this is academic. After the diagnosis, you are grappling with living in a new chaos. Plans have to be suspended. And, there is always the growing Primal Fear. You quickly learn the difference between mouthing your beliefs, and experiencing them…..between talking about it, and living it. It is similar to the issue of death. We all know it will come. We can talk about it from the pulpit or among friends…..but when it is there, in front of you, you feel inadequate and confused.

 

Sara:

 

I think that families do grapple with the chaos of cancer. It just seems to create a semi-permanent state of dread and uncertainty. You can’t seem to move forward until your loved one starts passing those all-too-critical milestones, but then the worry is still there in the back of your mind that it can come back and disrupt life all over again.

 

John:

 

I am of the opinion that NOTHING fully prepares you for this experience. There must be some transference of your knowledge, skills, and experiences at a subconscious or subliminal level. But I really cannot tell you our backgrounds prepared us to deal with cancer.

 

Sara:

 

If you could sit down with a group of “newbie” caregivers on the first day of their loved ones’ cancer treatment, what pearls of wisdom would you share to help them start off on the right foot?

 

John:

 

Learn as much as you can about what will be going on and “cancer,” as quickly as you can. Set up your best sources as “Favorites” so you can go back to them later. Try to find/create lists of Resources.

 

Review your medical insurance. Somewhere around 75% of all bankruptcies in America are medically induced. People are losing their life’s savings, their investments, and their homes because they did not understand or respect the coming medical quicksand. Look at the costs of the most commonly prescribed cancer drugs (p.44). We were on the daily hormone therapy Tykerb—$4,737.per month. She underwent one chemotherapy treatment each of the last four years—$35,000.

 

You have already received treatments totaling $100,000 and we have not counted any doctor visits, office visits, lab draws, diagnostic imaging….etc. Conventional insurance, including Medicare, is 80 : 20 insurance; the insurer pays 80% and the patient pays 20%. In the last years of her life, we spent close to $200,000 per year. 20% of that is $40,000. PER YEAR! Whom do you know who can come up with these levels of funds….annually??? If she had needed a stem cell transplant, add $150,000 to the bill. Brain surgery? Another $150K…

 

Conventional insurance will consume your resources like a forest fire…..Unstoppable.

The answer lies in insurance with plans that offer an “OUT-OF-POCKET-MAXIMUM.” Once you hit the OPM, the insurance carrier pays 100%–full costs .Do the math. (Check pp.44)

 

Sara:

 

It’s almost mind-numbing to think about all that in addition to having to care for a loved one with cancer. In many ways, it just adds to the stress when to have to juggle the financial details. And yet, if you don’t, you wind up even more overwhelmed. It sounds like cancer families should start planning as soon as possible, to avoid as many pitfalls as they can. What else would you recommend?

 

John:

 

Focus on LIFE. Find ways to build in LAUGHTER (pp.73-76). Find ways to break through the overwhelming myopia that cancer brings. Cancer gets in your FACE (p70). Become creative in your relationship with your loved one. Find ways to play, to laugh, to enjoy…. Laughter drives out cancer, at least for the moment. Enjoy life. Engage in Life. Don’t live cancer; live life (that just happens to include a distraction called cancer).
 
End of Part One —

Part Two of “Real Men Don’t Run”

 

About the author:

 

John Garnand has spent a lifetime as a teacher. Most recently, John retired from the Leeds School of Business of the University of Colorado at Boulder. For twenty-one years, he was an award winning instructor in the general areas of business strategy, management operations, ethics, and public policy. While at the University, he established the Multicultural Business Students Association, to help disadvantaged students compete and excel. Before this, Dr. Garnand held the position of Vice President for Administration at Regis University in Denver, CO. He was also a graduate faculty member in the Regis University Masters of Business Administration (MBA) program.
 

About the book:

 
Cancer Caregiver Roles: What You Need to Know is available in print and in digital e-book form:

Amazon Softcover $8.99 E-Book $3.99
Barnes & Noble Softcover $8.99 E-Book $3.47
Kobo Books E-Book $3.49
Google Books E-Book $3.03
Balboa Press Bookstore Softcover $8.99 E-Book $3.99

Categories
cancer caregiver cancer families caregiver education Stowe Stowe Weekend of Hope Vermont

Cancer Families, Another Stowe Weekend of Hope Is Coming Up!

It’s coming up on the horizon. Once again, it’s almost time to sign up for the Stowe Weekend of Hope. This year, it’s May 3-5. Sign-up begins March 1.

In case you’re unfamiliar with this event, the people of Stowe, Vermont put on a weekend in May for cancer patients and their families. The accommodations are free for first-time cancer attendees. There are discounted accommodations for those who return and for family members.

Throughout the weekend, there are a variety of activities, from recreational to spiritual to educational. It’s a chance to get together with other cancer families and share inspiration, lessons learned, and to meet with medical professionals who are striving to improve the lives of cancer patients through new medicines and treatments.

No two cancer patients  or two cancer caregivers will ever face the disease in the same way. As human beings, we all have different beliefs and different experiences. Sometimes it’s really nice to expand our horizons and take a look at the disease with fresh eyes.

Vermont is a lovely place to visit any time of the year, and the fact that the people of Stowe are so welcoming to cancer families makes it all the more wonderful a place to be in May. If you are a cancer caregiver or cancer patient, and you just want to have the chance to rub elbows with others like you in a beautiful setting, consider taking advantage of this offer.

For more information, follow this link:

The 13th Annual Stowe Weekend of Hope