My mother was the cliché stay-at-home-mom: Dinner was on the table every evening; laundry was washed, folded, and put away twice a week; the refrigerator was forever packed with fresh, healthy food; and the house was always spotless. So when I walked into the living room at 6:30p.m. and saw the place unvacuumed, with dinner nowhere in sight, I immediately knew something was wrong. I sat on the couch next to my mom, who was reading a book. She placed the book in her lap, looked me in the eye, and calmly uttered three words that forever changed my life: "I have cancer."
I was 18 years old.
Everything I had assumed about life came crashing down. I felt confused, overwhelmed, terrified. My cortisol level shot through the roof, and I am fairly certain it remained that high for the following six years. That's because, literally overnight, I went from being my mother's child to being her caregiver -- suddenly responsible for managing doctor's appointments, medications, chemotherapy treatments, surgeries, insurance paperwork, and all other aspects of my mother's care.
I was not alone. Today there are over 65 million Americans who serve as informal caregivers -- providing $450 billion worth of unpaid services. The learning curve is steep and fraught with emotional turmoil. So after my mother's passing, I reflected not only on how I might have done a better job, but also on how I might use my experience to help others in a similar situation. Here are the three most important lessons I learned:
1. Build a Team
A support team includes family and friends who are willing to help, in whatever ways they can. As the primary caregiver, you will delegate responsibilities, according to ability and availability. One family member may be terrific at organizing paperwork but too queasy to go along for a medical procedure. Another may be perfect to call with a 3:00 a.m. meltdown but all wrong to let near the kitchen. Make a list of who is good at what, and who is available at what times, then mix and match accordingly. Wherever finances allow it, be sure to hire a team of professionals as well -- including an attorney, insurance broker, and CPA. Caregiving is not about having all of the answers or doing all of the work. It is about knowing whom to call and what to request.
2. Organize Information
Being organized is key to being a successful caregiver. Design a system through which you can track doctors and bodyworkers, medications and supplements, appointments and hospitalizations, medical bills and insurance paperwork. Caregiving is not a lesson in memorization. To stay on top of the overwhelming amount of information that inevitably will come your way, it is useful to designate a filing cabinet and three-ring binder to document and file pertinent information. For those who feel too overwhelmed to build a system from scratch, I created The Medical Day Planner -- which takes the thinking out of organizing, guides caregivers on what information to monitor and how, and keeps the most crucial information all in one place.
3. Take Care of Yourself
As a caregiver, it is important to give priority to the person who depends on you. It is also important to take care of your own basic needs. Caregiving is demanding on the physical, emotional, mental, and spiritual levels, so it is easy to burn out. If you are burnt out, you will not be useful to anyone, so nurture and replenish yourself with the following steps:
- Eat regular and nutritious meals. While caregiving, it is tempting to skip meals, eat junk food out of vending machines, or pick up fast food at drive-through windows. Poor nutrition can deplete your stamina, so eat well: When shopping, buy produce that is pre-washed, pre-chopped, and pre-packaged, to ensure you get your daily dose of vegetables and fruits, without having to put in the effort of washing and cleaning up. If you know your day will be busy, or if you anticipate being in a medical setting for a long stretch, pack a lunch or nutritious snack. If you are already on the go, resist the temptation of rolling into the nearest fast food chain, and instead, take an extra five extra minutes to stop at the deli counter of a local supermarket -- where you can order a healthy entree and side dish.
- Take time out. Ask someone on your team to take over caregiving duties from time to time. Use this opportunity to read a book, exercise, get a massage, or sit quietly in nature. Do whatever helps you relax and feel happy.
- Sleep. Human beings can only run so long without proper sleep. Think of it like putting gas in a car: No gas, no go. Give your body and mind the opportunity to rest from all the levels on which you are pushing yourself.
- Express yourself. The caregiving role can be overwhelming, and pent-up stress can have an adverse effect on one's health. Find a neutral party, such as a family therapist or caregiver support group, to honestly express your feelings about matters you are uncomfortable discussing with friends or family.
The role of caregiving can last many months, or in cases like mine, many years, so it needs to be sustainable. The most important thing to keep in mind is that you are not a superhero and that caregiving need not be up to you alone. Even if few people in your immediate circle are available to support you, there are private, medical, and social service groups that can offer assistance. So get the help you need, create the systems that work for you, and take good care not only of your loved one, but also of yourself.
Tory Zellick is author of "The Medical Day Planner: The Guide to Help Navigate the Medical Maze" (Victory Belt Publishing, June 2012), a step-by-step guide on how to tackle each aspect of caring for oneself or a loved one who is ill, regardless of medical condition.