Must-Have Caregiver Tips to Get Organized, Find Help & Recharge

Cancer caregiving involves a wide range of experiences, feelings, and responsibilities. Whether you describe yourself as a caregiver, care partner, care supporter, or co-survivor, there’s no question that the role can be very rewarding and fulfilling. But caregiving can be hard physically and financially. Sometimes, it can also bring about complicated emotions like anger, shame, and guilt.

First, know that you’re not alone. Many caregivers have the same questions, concerns, and challenges you may be experiencing. Consider the following caregiver statistics:

• 1 in 5 Americans identify as caregivers
• 61% of family caregivers also work
• 23% of caregivers report difficultly coordinating care
• 24% of caregivers care for more than one person

It’s also important to know that you don’t have to navigate your caregiving role on your own. There are many resources that can support you and help you thrive. A good place to start is with some expert guidance from our Cancer Support Helpline’s Christina Bach, MBE, LCSW, OSW-C, FAOSW, and Nichole Goble, Director of Community Initiatives at the Caregiver Action Network.

Learn from Christina and Nichole as they share a host of handy tips and resources for caregivers in the webinar Bridging the Gap: Navigating the Practical Challenges of Cancer Caregiving + Enhancing Communication with Your Loved One.

Christina and Nichole, who are both long-distance caregivers, share personal stories and practical strategies to help you:

• Assess your needs and get organized
• Find help and support
• Make time for self-care to relax & recharge
• Manage complex emotions
• Maintain open & constructive communication with your care partner

Keep reading for a few highlights:

Take Stock of Your Needs

As caregivers, “we’re concerned all the time,” Christina says. “We’re always worried about the future.”

Here are just a few common worries among caregivers:

• Am I doing this right?
• What if something happens to me? Who will take care of my loved one?
• Can I keep doing this? 
• Are there people who can help us?
• What if I need to pay somebody to help us?
• Who’s going to take care of the kids, the spouse, the dogs … while I’m focused on caregiving?

When caregivers experience anxiety and worry, it can lead to other mood disturbances, sleep issues, and burnout, notes Christina. It can also lead to unhealthy patterns like not eating, not drinking enough water, or not getting enough physical activity.

In addition to worrying, it’s also common for caregivers to miss or forget their own healthcare appointments and needs. “They cannot find space for it in their schedule,” says Christina. “And oftentimes caregivers feel guilty. We feel ashamed. We’re isolated, oftentimes lonely and angry. We love being a caregiver for the most part, but we are also worried about voicing any of these emotions as realities of our experience.”

It’s okay to feel all those feelings, Christina adds. The good news is there are strategies that can help caregivers cope and manage personal challenges. “Now’s the time to take stock,” she says.

Ask yourself these questions:

• What can I do?
• What can’t I do?
• What am I uncomfortable doing?
• What might I be able to do if someone taught/supported me?
• What do I need to do for myself?
• Who can help?
• Do I have resources to pay for additional assistance?
• Can I get financial support to provide care?

After you take stock of your needs, you are ready to get organized. One tip Christina recommends is making a list of tasks that others can help you do. For quick access, you can keep the list in a note-taking app on your phone. Then, when friends and family offer to help, you can share your list with them.

To organize helpers, you can create a personal network site on MyLifeLine, our free online support community for people impacted by cancer. There, you can easily join your friends and family together and assign volunteers to help you with specific tasks, such as rides to medical appointments, meal preparation, pet care, and more.

Build Your Online Community Now

 “A lot of times I hear from caregivers ‘I don’t have any more time for myself.’ We have to do the work to make the time to sustain ourselves.” ― Christina Bach, MBE, LCSW, OSW-C, FAOSW, “Bridging the Gap”

Improve Communication With Your Care Partner

Having open and constructive communication with your care partner can be beneficial to both of you. “It promotes connection between you and your loved one, it can improve coping resilience, and it can lead to better outcomes for you and your loved one,” explains Nichole.

So, how can you improve and strengthen communication when you’re navigating the complex emotions of caregiving, such as anger or frustration? Or when you are having hard discussions such as end-of-life planning?

Here are just a few pointers Nichole shared:

1. Respect your own feelings, needs, and desires.

• Notice and name your feelings.
• Pick one emotion and track it all day.
• Recognize what is your need and what is the need of the other person.

2. Be clear and be honest.

• Use “I” statements.
• Consider a weekly check-in to talk about how you both are feeling.
• Give each other space and respect to share your feelings.
• Identify your and your care partner’s preferred style of communication.

3. Know your limits. Keep your emotional pot from boiling over.

• Recognize the signs (racing thoughts? quickening pulse?).
• Ask for a break or a stop ― specify how long you’ll need and when you’re committed to trying again.
• Clear your head (take a walk, or talk with a trusted friend).

“When you’re feeling those complex emotions, put a name to them. Name them and notice them. That’s part of getting that intervention and being able to manage them.” ― Nichole Goble, “Bridging the Gap”

Ready to learn more from Christina and Nichole? Watch “Bridging the Gap” now:

*Editor’s Note: “Bridging the Gap” was made possible with generous support through Merck and in partnership with the Caregiver Action Network.