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.
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.
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.
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.
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.
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
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