Guidance for Cancer Caregivers

Cancer Caregivers: The Basics

Assuming the role of a cancer caregiver when a spouse, parent, sibling, child, or friend is diagnosed with cancer comes with a unique set of responsibilities. The first thing to understand is that there is no shame is asking for help. This can be an overwhelming time for both patients and their caregivers, too.

Through interviews with expert oncologists, social workers, patients advocates, and more, we’ve come up with a checklist of helpful steps cancer caregivers can take throughout the journey.

Cancer caregivers may:

• Attend doctor visits with the patient
• Help the patient take notes/ask questions
• Provide transportation to and from treatment
• Accompany the patient during treatment
• Help keep track of side effects
• Link up with a social worker/patient navigator
• Help with day-to-day activities
• Provide emotional support

Dr. Jayanthi Lea, gynecologic oncologist at UT Southwestern Medical Center, shares some guidance for new cancer caregivers. 

Social Workers/Patient Navigators Can Help

Social workers or patient advocates can be a huge help for cancer caregivers during the journey. As a caregiver, you may want to enlist the help of one of these employees — who often work for cancer centers — for guidance on treatment options, financial assistance, where to seek mental health resources, and so much more.

“Patient navigators can function differently at different hospitals,” Dr. Kathie-Ann Joseph, a surgical oncologist at NYU Langone Health’s Perlmutter Cancer Center, told SurvivorNet. “We have a really wonderful program at [NYU] where we used lay navigators — meaning they’re not nurses, although you can use nurses or social workers — that pretty much help newly diagnosed cancer patients through the continuum of care.”

Dr. Kathie-Ann Joseph explains how patient navigators can help throughout the treatment process.

These navigators can meet with patients from their first doctor appointments and can also:

• Attend appointments
• Provide an assessment for next steps of care
• Assist with housing, transportation or immigration issues
• Help with financial issues
• Provide direction on legal issues

How Cancer Caregivers Can Find Time to Care for Themselves

When you suddenly find yourself acting as a cancer caregiver, the lifestyle adjustment can be jarring. Many people welcome the role of cancer caregiver and the opportunity to help out someone they care about deeply — but that doesn’t mean it’s easy.

Filling a caregiver role can be extremely stressful and caregivers often neglect their own needs, which can create a host of additional problems. Experts stress that you will be a better caregiver if you also prioritize caring for yourself. Taking care of your health — whether that be with diet, exercise, or making time for activities you enjoy — is still crucial.

Julie Bulger gives some tips on how caregivers can care for themselves.

“It is important to have some things that you can do that’s kind of outside of the focus of caring for somebody that you love with cancer,” Julie Bulger, manager of patient and family-centered care at Vanderbilt-Ingram Cancer Center in Nashville, told SurvivorNet. Bulger suggested caregivers find some activities that help them relax — like taking a walk or going for a massage.

“… there’s a lot of opportunities for support virtually through educational resources, support communities,” she added. “You can talk to somebody. You can get therapy virtually now.”

Cancer Caregivers Should Seek Professional Help If They Need It

When a stressful life event occurs — like a loved one being diagnosed with cancer — people respond in a variety of ways.

“The way people respond is very variable,” Psychiatrist Dr. Lori Plutchik told SurvivorNet. “Very much consistent with how they respond to stresses and challenges in their life in general.”

When struggling with a new stressor, there are many different — and healthy — ways to cope. For some people, this may mean seeking out traditional therapy, but it’s not the only option.

Psychiatrist Dr. Lori Plutchik discusses how people may respond to stressors in very different ways. 

If you are struggling mentally due to the stress of being a cancer caregiver, there are many options to help you cope. These include:

• Seeking professional help from a psychiatrist or therapist
• Learning healthy coping skills
• Medication such as antidepressants
• Adding more physical activity to your routine
• Adjusting your sleep schedule
• Connecting with others via support groups
• Mindfulness and meditation

Take Some ‘Me’ Time

Watching someone you care about struggle with illness is difficult enough, but to be suddenly dealing with the responsibility of caring for them can make the situation that much harder. While you, of course, want to do all you can for your loved one, it’s important to acknowledge your own needs as well.

“When you find yourself suddenly having to care for somebody, to be the primary lifeline for them, you very well could have mixed emotions,” Pastor Tom Evans, who cared for his own father as he went through Alzheimer’s, told SurvivorNet. “Maybe it’s anger. Maybe this person never cared for you in the past, and now you have to do it for them. And maybe you’re gonna feel like you’re selfish when you need a break.”

Pastor Tom Evans shares some advice for managing life as a caregiver.

It’s important to remember that everyone needs time for themselves. This could be as simple as:

• A daily walk around the block
• Catching a movie
• Hitting the gym
• A weekly shopping trip
• Dinner and/or drinks with friends
• An occasional spa visit

It’s worth it to make sure you still make time for the activities you enjoy.  Pastor Evans noted that trying to be a caregiver 24/7 will “break anybody.”

If you can’t, or don’t feel comfortable, leaving the person you are caring for alone for any significant amount of time, ask for help. Maybe you have a friend or family member who can relieve you of caregiving duties a few times a week so you can tend to your own needs. If you are struggling to find someone to stay with the person you care for, your community may have options for respite care or sitter-companion services.

Where Cancer Caregivers Can Find Help With Finances

Figuring out finances can be a particularly stressful part of being a cancer caregiver. It’s often difficult to find resources (and particularly difficult to determine what sort of assistance programs any given patient may be eligible for).

In some states, you may even be able to receive compensation for taking on the role of caregiver if you need to take time off from your normal work.

If your loved one is being treated at a cancer center, you may be able to enlist the help of a social worker or patient navigator. These employees may be able to direct your towards financial assistance programs, help negotiate bills and payments plants, talk to your insurers, and link you up with advocacy groups.

There are also many options cancer patients and their loved ones can look to for assistance covering costs, including:

Covering Caregiver Costs

• Some states offer compensation to cancer caregivers. You can check with the Department of Health and Human Services for local resources.
• CancerCare offers free services to caregivers as well, and their oncology social workers may be able to connect struggling caregivers with mental health professionals, support groups, and other resources.

For Help With Treatment Bills

• The Cancer Financial Assistance Coalition can direct patients and their families to available local services.
• Many treatment centers offer extended payment plans and some may offer temporary payment delays, according to the American Cancer Society.
• CancerCare, which connects patients with oncology social workers, may be able to assist with co-pays, transportation, and other costs associated with care.
• The HealthWell Foundation may be able to help uninsured patients pay for treatment.
• The American Cancer Society may be able to link patients and their families up with local resources (they offer a 24/7 helpline).
• The Patient Advocate Foundation (PAF) works with patients and their insurance companies to resolve issues and may provide direct financial support to some patients.
• The Patient Access Network Foundation may be able to help with out-of-pocket costs associated with cancer treatment.

For Help With Transportation and/or Housing

• There are several programs that may be able to assist patients if they need to travel by plane to get treatment, including Air Care Alliance, the Corporate Angel Network, and PALS (Patient Airlift Services).
• Patients with Medicaid may be entitled to help paying for transportation costs to and from treatment.
• The American Cancer Society’s Road to Recovery program can hook patients and their families up with volunteer drivers.
• Mercy Medical Angels may be able to help patients and their families pay for transportation.
• The Healthcare Hospitality Network can assist with housing if a patient must be treated far from home.
• The American Cancer Society Hope Lodge Program gives patients and their caregivers a free place to stay during treatment in dozens of cities across the U.S. and Puerto Rico.

For Help With Food

• Food assistance may be available to people going through cancer treatment and their caregivers. Look into the Supplemental Nutrition Assistance Program – aka SNAP – or a program like Meals on Wheels.