Facing myriad responsibilities both new and old, caregivers can benefit from time management techniques.
Pam Pilch was sitting by her son Jonathan’s hospital bed while he was in treatment for leukemia when the phone rang. It was her older son. He wanted to take guitar lessons.
Where would Pilch find the time to scope out a guitar teacher for him, and take him to and from lessons, and make sure he was practicing his new instrument — all on top of getting her middle son to soccer practice and handling Jonathan’s health needs and the countless other stresses of everyday life?
“An overarching theme among caregivers is how to juggle the responsibility to take care of a loved one and themselves, and not just the medical care but all these other more mundane household things that, when piled up, can become incredibly stressful,” says licensed clinical psychologist Allison Applebaum, the director of the Caregiver Clinic at Memorial Sloan Kettering Cancer Center.
Pilch, of Richmond, Va., says that when her son was diagnosed at 2 ½ years old, the world came to a complete stop, except it didn’t.
“Treatment takes full priority. When you need to be at the hospital everything else has to yield, but in my case, I had two older children at home,” she says.
It won’t always be guitar lessons — it could be home maintenance, work responsibilities, personal finance or even just taking care of yourself — but no matter what the tasks are, time management while taking care of a loved one with cancer is a balancing act.Pilch says the first step to successful time management is admitting that you can’t do it all and it may not all get done perfectly.
“You have to accept help,” she says. “Someone else may not put the dishes in my dishwasher the way I would have done it, but if the dishes got washed, who cares?”
Pilch says she called in grandparents and friends to help and, with the support of those around her, was able to get her son guitar lessons taught at the hospital. Years later, he still plays in a band.
“You’d be surprised how many people come out of the woodwork to help,” she says.
Staying flexible is also key. If you were someone before cancer who had to have your day run according to plan, Pilch says that will likely go out the window.
“You never know when you are going to wind up in the hospital for several days,” she says. “Don’t expect that you’re going to be able to control the things that come up.”Rachel Cannady, a behavioral scientist with the American Cancer Society, suggests creating a master list of everything that needs to get done — “a brain dump of everything that happens throughout the day.” Then, decide what needs to be done by you, and what can get done by others.
Prioritizing is crucial, Applebaum says. “Making sure their loved one gets their medicine on time may be a top priority, but making sure the lawn gets mowed can wait,” she says.
Good tasks to delegate are the practical ones, such as grocery shopping or cooking, adds Carly O’Brien, an oncology social worker with the caregiver program at CancerCare, an organization that supports patients.
“The reality is that this is something that cannot be done by one person,” Applebaum stresses. “Delegating and expanding the support network is something that is critical.”
To help caregivers manage their time, Pilch suggests that they keep a good schedule. “Write everything down,” she says, “and write it down right away. When you make an appointment, put it in your phone right then and there so you don’t forget.”
Using a Google Calendar can help multiple caregivers coordinate what needs to get done when, and access changes to the schedule in real time. For those not as technologically inclined, oldfashioned paper calendars, lists and phone calls or emails might suffice.
“At the end of the day, it’s never going to be perfect,” O’Brien says. ”Helping people manage their expectations is important, because this is on-the-job training and there is going to be a little trial and error.”One of Pilch’s friends, another cancer mom, didn’t go to the dentist for three and a half years while her child was in treatment. When she finally went, her mouth was full of cavities.
O’Brien says caregivers can’t ignore their own needs.
“That’s usually the first thing people forget about when they are taking on so many responsibilities,” she says. “Carve out intentional time to take care of yourself and do things to make you feel good and normal.”
Many caregivers feel guilty leaving their loved one so that they can do something for themselves like go to the gym or get a haircut, but O’Brien says it’s crucial. “You’re going to be a better caregiver for your loved one if you feel like yourself,” she says.
Cannady agrees. “Even though it’s counterintuitive to take time away for yourself as a caregiver, it’s almost necessary,” she says. “Don’t shy away from what your needs are.”The emotional part of caregiving and its toll on your dayto- day life cannot be ignored.
“Realize that everything is going to take longer than you think it’s going to because you’re traumatized by the grief of cancer,” Pilch says. “It’s going to take longer for you to do the taxes if your husband did it every year, not just because you have to learn a new skill, but also because it’s really sad and scary that you have to do that. Grieving and trauma suck your emotional energy, and that’s just part of it.”
The shift in responsibilities can also strain the relationship between caregiver and patient, Applebaum says.
“Giving up control is very difficult for patients. The caregiver doesn’t want the patient to feel bad about what they can’t do, but the patient has to accept their new limitations,” she says. “There is a sense of sadness and loss on both sides. It’s a complicated juggling act.”
Caregivers shouldn’t be afraid to talk about those emotions, O’Brien suggests. “Talking to people in a similar situation can be really comforting and mitigate some of those feelings of guilt and stress,” she says.
Hospitals often have in-person support groups, but online forums and groups are another way to find support and hear what is or is not working for other caregivers in similar situations.
“There’s a common misconception among caregivers that they have to do it all themselves and, if they don’t, what does that say about them as a caregiver?” O’Brien says. “But they aren’t superhuman. They can only take on so much.”Pilch’s story ended well. After treatment for more than three years, Jonathan has been in long-term remission and recently turned 10.
“There are days in my life now that I don’t remember we went through a cancer fight. I never thought we would reach a day when we wouldn’t think about cancer,” she says, though she realizes not everyone is so lucky.
For other caregivers, Pilch has some simple advice. “Don’t try to plan or control too far ahead,” she says. “Just take it one day at a time.”