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