According to the National Cancer Institute (NCI), approximately 2.8 million individuals in the United States serve as a caregiver to their loved one with cancer; yet, resources and research for this group are not as common.
The 3rd Annual GI Cancer Patient Summit – hosted by Hope Connections for Cancer Support and The Ruesch Center for the Cure of Gastrointestinal Cancers at Georgetown Lombardi Comprehensive Cancer Center – featured a panel discussion on the role of the caregiver and how to deal with a cancer diagnosis.
The panel, comprised of caregivers Lorraine Butler, Chuck O’Neill and Donna Parry, offered advice on topics like managing time, coping mechanisms, decision making, joining support groups and what more can be done for those facing these issues.
“There really isn’t an awful lot of information out there for caregivers, and just as a patient is thrust in to the world of cancer, it’s the same way for the caregiver – the patient and the caregiver become very interdependent immediately” said panel host Martha Raymond, founder and CEO of the non-profit organization The Raymond Foundation.
“It’s important to understand the depth of what caregivers go through – from managing physical situations to side effect management and the emotional and psychosocial effects. There is a diverse gambit of emotions and roles that a caregiver plays,” she added.
Advice for Others
To start, the panel offered two pieces of advice for new caregivers: use science-based, credible sources and be alert during clinic visits. In addition, the group added that it is also helpful to avoid message boards and to also look at the date for which sources were published. In particular, Parry, whose husband passed last December after receiving a diagnosis of pancreatic cancer in 2015, noted that if information was more than a year old, she didn’t refer to it.
The panel also emphasized how important it is for a caregiver to be the eyes and ears for their loved on during a doctor’s visit, adding that bringing a notebook full of questions and summaries is helpful, too.
“Focus on the clinic and be very alert. Come in with questions and have a checklist so if the physician doesn’t get to them all, you can bring them up,” added O’Neill, whose wife was diagnosed with stage 4 colorectal cancer in 2015.
“And also bring good notes to summarize: What’s the game plan? What are the options we are considering?” he added. “I like to think I can go home with as few questions remaining as possible … and then you feel better about the treatment and side effects and be confident that it is going to have a good effect (for your loved one).”
With this, shared decision making between a patient and their caregiver may also come in to play when it comes to treatment options. “There really is no one right way to (make a decision). A caregiver and patient need to figure out what will work for them,” said Butler, whose husband received a diagnosis of stage 4 gastrointestinal cancer five years ago. “But, however much we’re in this situation together, I keep in mind that it really is his body and his disease.”
However, Parry emphasized that, if a loved one shows resistance – whether it be for a certain treatment, for example – reinforcement from a friend, peer or another family member can also help. She even drew upon her own experience when her late-husband refused to go to treatment on a Wednesday versus Thursday because of his teaching schedule. After calling upon one of his colleagues, Parry’s husband agreed, “and guess what – he went on Wednesday,” she said jokingly to the crowd.
Ways to Support
The NCI estimates that caregivers spend on-average about 30 hours a week on caregiving duties alone – on top of time spent working, spending time with family or children, running the household and more. To address potential time constraints and the stress that comes along with it, the panel emphasized that physical and mental exercise can be a key coping mechanism when this stress becomes overwhelming.
In addition, events like the GI Cancer Patient Summit or resources such as Hope Connections and support groups can also be helpful.
“You think you are going through something that no one else is going through, and then you talk to somebody (and they agree) – the relief (you feel) that there is someone else going through what you are going through,” Parry said. “It doesn’t change what you are going through, but it makes it extremely more bearable.”
To leave off, the panel acknowledged that there is still much more to be done for those in the caregiver role. To address these needs, Raymond mentioned the implementation of a survivorship care plan, but for caregivers – one that is web-based and offers coping mechanisms and the ability to connect individuals in similar situations.
Butler added that the addition of a health care liaison – a person who knows about trial matching and can translate the science of diagnosis and treatments – could also be helpful for caregivers.
Parry had just one more solution to help address these problems: cure cancer. “Solve this problem,” she added. “If we cure cancer we wouldn’t need all of those caregivers. So, the bottom line is: Let’s do everything we can to do away with the problem.”