By Brenda Della Casa
There’s nothing to prepare you for the news that someone you love has been diagnosed with cancer, and jumping into action to offer your full support is a natural response. While you may commit to doing everything you can, the truth is that there’s only so much you can do, and it’s common for this realization to bring about feelings of guilt, shame, and confusion.
As you begin your caretaker journey it’s important to remember two things: however isolated you might feel in your circumstance, you are not alone, and prioritizing your own health isn’t selfish — in fact, it’s an essential component of your new role.
“Caregiver stress isn’t something I had ever heard about but my experience with it was very real,” Says Melissa B., London. Melissa spent three years caring for her great aunt through her breast cancer treatment and was surprised to find herself feeling a wide-range of emotions throughout the experience. “Obviously, I love my aunt and wanted her to be cured, but the longer I took care of her, the less I took care of myself. At first, I felt like a good niece, but then I started to resent not having time to enjoy my own life. When I did find a way to get out and have fun, I felt so guilty that I avoided it. That’s when I was diagnosed with depression,” she says.
What Melissa describes is known as Caregiver Syndrome, a common condition that is defined as “exhaustion, anger, rage, or guilt resulting from unrelieved caring for a chronically ill patient”. Professionals warn it’s a dangerous side-effect that can lead to a number of serious health complications such as higher anxiety and a weakened immune system, particularly if you are female.
Whether you’re new to the role of caretaker or well into it, it’s our hope the following tips will offer some support. Today, we are sharing 5 ways to care for yourself and your loved one throughout their treatment journey.
Know Your Limits
It’s honorable that you want to be there for your loved one 24-7, but it’s not realistic. Having an understanding your own needs will help you to avoid burnout and save your resources to provide the best support for the loved one who needs you. Knowing your limits is also essential, and it begins with understanding what your personal risks are so that you only take on what you’re able to handle. As we mentioned above, females are reported to have a higher risk of stress related to caring for a chronically ill patient and those who have less formal education, a lack of coping and problem-solving skills, depression and/or financial difficulties are all at a higher risk.
“Looking back, it is clear I went from superhero to martyr very quickly and both titles left me with significant stress. I am also pretty sure it stressed my aunt which only made things worse,” says Melissa. Melissa’s experience is not uncommon. In fact. Caregiver Alliance reports that 43% of live-in caregivers report emotional distress and 38% of all caregivers classify the role as “highly stressful.”
Balance Prevents Burnout
“I really think there is a lack of attention on caretakers, which is underestimated. We’re obviously not the main priority by any stretch, but there’s a reason we are called “co-survivors,” says Damian M., New York.
In 2008, Damian’s fiance, Kate, was diagnosed with breast cancer at the age of 29. The diagnosis resulted in Kate having a double mastectomy, chemotherapy, radiation therapy, and hormone therapy. At the time of her diagnosis, Damian was in the middle of a two-year graduate school program thousands of miles away from Kate, which brought up feelings of guilt and stress. “[It’s important that caretakers] take the steps that allow them to be in a healthy state of mind and physicality to be there for loved ones. That might mean taking a day or days off to recharge your own batteries,” he says. Whether it’s scheduling a few hours a day to keep on top of your life admin, taking a quiet walk in the park, or booking a full day for yourself once a week, finding time to restore is the only way to beat burnout and offer the best care to your loved one.
Remember That Feeling Guilty Doesn’t Make You Wrong
Guilt is one of the most common emotions associated with caregiving, but it’s important to remember that meeting life’s requirement to be present even when a loved one is in treatment is not something to be ashamed of.
“I felt very guilty being halfway across the country at graduate school while Kate was home going through treatment. But we made a decision that, aside from her survival, the most important thing was to finish my degree on time so that we could get married and move on to the next chapter in our lives. We were lucky that we had enough support to enable us to do that,” says Damian.
Reach Out For Support When You Need It
“When people offer to help, take it,” says Damian. He notes friends, including her in social activities and loved ones driving her to chemo as being positive parts of Kate’s treatment journey. “It ended up becoming a bit of a mini party for my wife every two weeks as a couple of girlfriends hopped in the car and came along. We even had a nurse friend drive 45 minutes every two weeks to administer a shot that my mother-in-law couldn’t bring herself to give to my wife,” says Damian.
While he is the first to acknowledge that not everyone will have access to this kind of support, he cautions not to shy away from saying “yes” to help. “If people offer, remember that they generally really want to help, and it’ll go a long way,” he says.
Join an Online Community
Talking to someone who has been through the caregiving journey can also alleviate stress and serve as a great information resource. But what if you don’t have anyone local? Hop online. The are dozens of great websites where you can share information, gain advice, ask questions or just vent when you need to.
CancerCare.org offers a free 15-week online course for people caring for a spouse or partner with cancer and Caring For The Caregiver is a private Facebook group with over 1,000 members dedicated to creating a safe forum to share thoughts and feelings. You can find more groups on Care.com.
What is your best advice for a new caretaker? Share your thoughts with us below.
Interested in learning more about your loved one’s treatment options? Download our discussion guide here.