The Beginning of the Long Road
The day of her diagnosis was typical of so many fall days in northern California: the weather was mild, with a slight breeze that lightly plucked the red and gold leaves from the massive trees that lined the streets of our small town; the morning air smelled of dry dirt tinged with lingering moisture. As far as I was concerned, life was pretty darn good. I had enrolled at a local college as an agriculture major, and I certainly looked forward to all that college life had to offer.
But when I arrived home from school on this particular day, I immediately knew that the day was anything but typical. My mom was sitting on the couch with a book, but it was obvious she was only staring at the pages; she wasn’t actually reading the words. It was then that she told me the lump she had found in her breast was malignant. Wanting desperately to know why, I knew that wasn’t the question to ask; instead it was now about What’s next?
The following nine months saw Mom endure chemotherapy, radiation, and a double mastectomy. My dad, my brother, and I were with her every step of the way. I quickly moved into the role of primary caregiver, trading toga parties for hospital gowns and escorting Mom to her doctors’ appointments and treatments.
Almost a year after her diagnosis, it looked as though she may have beaten this nasty disease we call breast cancer, and life could move on.
Exit Stage Left
With my mom’s health stable, I took the time to reevaluate my priorities. Seeing my mom face cancer at such a young age motivated me to live my life according to my own rules.
Determined to live out the adventure I had always dreamed of, I boarded a one-way flight to Maui with a few hundred dollars in my bank account, a backpack full of clothes, a sleeping bag, and my best friend by my side—with no intention of returning to the Mainland. I wanted to surf; I wanted to kayak; and, most important, I wanted to live.
For almost two years, I built the life I had always dreamed of: I had a fun, stimulating job; I owned a condo right across the street from a dog park (and the dog to go with it); I paddled outrigger canoes for a local canoe club; and I was in a happy, committed relationship. I was living life on my own terms—until the phone rang.
By the tone of my dad’s voice, it was obvious that something was wrong. To this day I will never forget what he said: “It’s your mom. The cancer is back. She only has a few months to live.”
By the end of that day, I had contacted a real estate agent to sell my condo, I knew what I needed to do to ship my dog back to California, and I was seeing an inevitable end to my relationship. At nine the following morning, I boarded a one-way flight home to California.
What the doctors said would be a few months turned into three and a half years—years filled with numerous doctors, several treatment facilities, and countless medications, treatments, tests, scans, and alternative modalities. Throughout, my mom’s prognosis was grim and there were few therapies available to treat her advanced disease. As caregivers our family became focused on maintaining her quality of life.
We never imagined the journey we would experience as caregivers, and I never knew how quickly I would be transformed. Upon hearing my mom’s diagnosis as an 18-year-old girl, my instinct was to ask, Why? But the end of our journey saw me asking, What next?
In the wake of my mom’s death and the reflection that followed, it became clear that what was next for me was to transform my personal journey for the greater good. As I spent time thinking about how my family’s experience could have been made easier, I was motivated to help other caregivers learn to navigate the overwhelming experience of helping a loved one face illness (see sidebar “The Medical Day Planner”).
The following tips emerged from this period of reflection.
Establish a “care team.” You may initially feel as though you need to be the sole caregiver. Maybe you feel you are the only one available to care for the patient, or you may be overwhelmed by the number of people willing to help care for the patient. But it is important to know that no single individual is capable of keeping a sane, present mind while caring for an ailing patient all on his or her own. Eventually, you will require some time off or away from the patient. If people are willing and able to help provide care, don’t hesitate to engage their help and create a care team.
When you create your team, first establish who will be the primary caregiver. It will be the primary caregiver’s responsibility to oversee the care team. A care team could be made up of family members and close friends who are willing to help in any way they can. The team could also include professionals who can assist with legal and financial matters—an attorney, an accountant, and an insurance broker, for instance. These professionals, along with medical staff, will help you navigate any unforeseen hurdles you may come across.
Assess the patient’s needs. Take the time early on to discuss the delegation of daily tasks and responsibilities with the patient and the care team. Some common tasks that will need attention include:
- Mobility and walking
- Driving and transportation
- Ability and awareness to take medication
It is important to include the patient in the assessment process and allow the patient to retain as much independence and dignity as possible. Once it has been established which daily tasks will require intervention, distribute tasks accordingly among the care team. Someone may be capable of mowing lawns and grocery shopping, while someone else might live at a distance but is capable of tracking financials and paying the patient’s bills online. Assign care tasks accordingly; allowing everyone to be involved in the process while bringing their individual strengths to the table will avoid any one person’s becoming overwhelmed.
Stay organized. Information may be flying in your direction at what seems like light speed, but caregiving does not need to be a test in memorization. Find a system that works for you and that allows you to track and document all important information related to the patient’s care:
- Physician’s contact information
- Tests and scans
- Insurance information and explanation of benefits
Take care of yourself. Many caregivers find themselves overworked, with little to no sleep or personal time. Running your own body into the ground is of little help to the loved one you are caring for. If you do not treat your body like a temple, it will soon fall to ruins. Pay close attention to the following wellness points:
- Take private time. Take time off or away from the patient to recharge.
- Get a full night’s sleep. When possible, do your best to get consistent, uninterrupted sleep.
- Exercise. Even if it is only a few minutes of walking a day, take the time to move your body.
- Eat well. Keep healthy snacks on hand and do not skip meals.
- Find a therapist. Address your own emotional needs to maintain wellness.
Know the patient’s final wishes. Final wishes are a difficult conversation to have with a loved one but are important nonetheless. The fear of not knowing what your loved one’s wishes are should far surpass the fear of asking these tough questions:
- What life-sustaining medical intervention would your loved one want or not want?
- Whom would your loved one want to make healthcare decisions once he or she is not competent? (Consult an attorney for the proper documentation.)
- Would your loved one prefer to pass away in a hospital, a skilled-nursing facility, or at home?
- Would your loved one like to be buried or cremated?
- Where would he or she like to be buried or have his or her ashes remain?
Understand that anger gets you nowhere. Our family’s favorite analogy for this is “the plane has already left.” When you miss your flight at the airport, you have two options: you can get worked up and angry about a situation that can no longer be controlled, or you can politely address the flight receptionist at the desk next to your empty gate and work through the situation. This is true with nursing staff, physicians, facility staff, or any other individual you come in contact with on this journey. Treating individuals as you wish to be treated will (almost) always improve communication. Learning to breathe and remain calm will improve your odds of accomplishing the task at hand—and maintaining your sanity.
The Medical Day Planner
The minute a cancer diagnosis enters the picture, so too does a constant flow of information: doctors’ names, clinic locations, medication dosages, treatment schedules, test results—the list goes on. As though coming to grips with the news of a diagnosis were not enough, patients and families realize quickly that it is essential to track and manage critical information to ensure that treatment, financial and insurance information, and side-effect management—among other things—proceed as efficiently as possible.
Tory Zellick’s experience managing this influx of information as the primary caregiver for her mother inspired her to create a comprehensive planning resource for patients and caregivers: The Medical Day Planner: The Guide to Help Navigate the Medical Maze (Victory Belt, 2012; $34.95). The hardcover spiral-bound planner is divided into sections that include “Patient Information,” “Medication,” “Appointments,” “Test and Scan History,” “Hospitalization,” and “Procedure History” and provides formatted space to record and track personal information, as well as educational material and definitions of the various stages and aspects of care.
The Medical Day Planner is a well-thought-out tool that offers patients and caregivers a place to consolidate essential information and maintain records throughout treatment and recovery.
For more information visit allthingscaregiver.com/the-book.