Category: Cancer Caregiver Roles: What You Need to Know

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

Post author By sarambarton
Post date March 4, 2013

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

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

Post author By sarambarton
Post date February 28, 2013

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:

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