Cancer caregivers know that stepping up to care for a loved one going through treatment is a daunting task. It’s time consuming, emotionally challenging and your other responsibilities don’t go away while you’re in caregiving mode. While the role is challenging, it’s also an honor to be there for someone through this painful time.
Often, you find yourself in this role with no prep time. Here are some pointers, from cancer caregivers, to guide you through the process.
It’s difficult to ask for and accept help, particularly if there’s a sense of pride or responsibility attached to your caregiver role. Sandie Lawrence was the primary caregiver for her husband when he was diagnosed with rectal cancer in 2008 and then her middle child in 2013 when he was diagnosed with an extremely rare cancer.
At one point, her son and husband both had surgery on the same day in separate states. She needed another set of hands. She traveled with one son for his surgery while her older son supported her husband. “It’s always hard to accept help. And asking for it is humbling,” Lawrence says. “I do ask for help now, and I stopped apologizing for needing it.”
Lawrence also recommends cancer caregivers be specific. Cooking is fun for her, so providing meals wasn’t on her list. “I learned to say, ‘No meals, but could you drop my kid off after school?'”
Have one binder with information on treatment plans, medications, emergency contacts and helpers. This is particularly useful if caregiving duties are being shared. “I kept track of her symptoms as they changed through the week,” says Sarah Campbell Doyle, who was a caregiver for her mother. “I wrote these down as well as other questions she had. I kept a notebook of times she had received her meds so others wouldn’t overdose her.”
Take Care of Yourself
Take a break, try a new hobby, sleep, take a bath, put on some clean clothes, spend some time with your friends and family and then go sleep some more. You don’t have to be perfect, and you don’t have to be on all the time. Elizabeth Geist, who cared for her mother, adds “From my own perspective of being the caregiver at the very intense end of life, I’d suggest or remind people to be kind and gentle with themselves, not to neglect self-care as much as possible.”
Be an Advocate
Being an advocate is one of the primary responsibilities of the caregiver, but what it means to advocate may change from person to person, and from day to day. Sometimes it means making sure no one steps on the patient’s ability to advocate for himself. It’s easy to baby a patient when what he really needs is to maintain his autonomy and dignity. But, there may be times when he can’t advocate for himself and will need you to speak up. Lawrence had to let her son find his own way to deal with the cancer. “In his case, he has a completely inappropriate sense of humor regarding cancer. Sometimes I cringe. But it’s his way…so I don’t make him stop.”
The hardest part is letting go. For Geist and Campbell Doyle, they had to say goodbye to their mothers and allow them to die peacefully. Lawrence experienced an entirely different kind of letting go, when she had to change modes from cancer mom back to the mom of a teen, “It has been so hard to let him be a reckless teen. It’s what he should be at seventeen.”
Taking care of yourself as your care for another means getting the support you need and desire. UVA Cancer Center has multiple support services available to protect your well-being as well.Learn More