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

a mature woman shares in a support group

Stock photo posed by models

“If you’re not taking care of your physical health and mental health, it’s going to be a lot more challenging to be there for your loved one. And you’re going to approach that burnout point pretty hard and fast”. – Nichole Goble, Webinar: “Bridging the Gap: Navigating the Practical Challenges of Cancer Caregiving”

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:


Watch, learn, and find encouragement in this engaging and empowering webinar, specifically for cancer caregivers.*

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

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10 Tips for Caregivers

Written by Sarah Vammen
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A man hugs his wife as they stand inside a sunlit greenhouse

This blog was originally published in November 2015 and was updated for relevancy.

Caregivers to someone with cancer spend an average of 8 hours per day providing care to their loved one. The demands of caregiving depend on several different things — stage of disease, types of symptoms experienced, treatment side effects, and more. A caregiver’s response to the cancer diagnosis, treatment, and journey itself can be just as important as how the patient responds. This makes the need for physical, social, and emotional support for caregivers essential.

Here are 10 tips to help caregivers find balance, support, and connection.

1. Find your support system

When a friend or loved one is diagnosed with cancer, it’s an emotional time. Sometimes it can be difficult to talk with your loved one about your feelings, because you both have so much going on. Many find one of the best ways to cope with stress, uncertainty, and loneliness is to talk to others who share similar experiences. To find your own support system, explore Cancer Support Community’s partner network and find a location near you. We have over 170 locations worldwide, with programs that include support groups, yoga classes, and educational workshops.

You can also connect with others like you on our discussion board for caregivers. Share your unique experiences and offer insights, coping strategies, and inspiration.

“People talk about a caregiver, but you don’t really know what a caregiver is until you’re really in that role…I learned that a caregiver wears many hats: listener, observer, protector, planner, anticipator, the backup brain to the patient, the organizer, the strong one, the levelheaded one. The caregiver is the go-to person all the time…I quickly realized that I could not do it all and that I needed help.”

–  Sheri, bereaved/former caregiver for a close friend

2. Gather information

There is truth to the phrase “Knowledge is power.” There’s no way to completely grasp the ups and downs of a cancer diagnosis and treatment — and you shouldn’t be expected to. Being armed with knowledge may help you accommodate your loved one’s needs and help you know what to expect.

The Cancer Support Community’s Helpline is here to help by offering free navigation for cancer patients or their loved ones. Our navigators can be reached toll-free at 888-793-9355 or online via our live chat service Monday-Friday from 9 a.m.-9 p.m. ET, and Saturday-Sunday from 9 a.m.-5 p.m. ET.

3. Recognize a “new normal”

Patients and caregivers alike report feeling a loss of control after a cancer diagnosis. Many caregivers are asked for advice about medical decisions or managing family finances. Some caregivers also need to take on new day-to-day chores. It is likely that your tasks as a caregiver will create new routines—after all, you’re taking on a new role in your loved one’s life as well as your own.

Maintaining a balance between your loved one’s disease and the daily activities of your own life can be a challenge. It may be helpful to identify the parts of your life that you can still control, such as your own health and relationships. In doing this, you will be able to create a strategy for integrating new routines with old ones. It may also help to acknowledge that your home life, finances, and friendships may change for a period of time. Sometimes the laundry might not get done, or maybe takeout will replace home cooking. Try to manage each day’s priority as it comes. Take a deep breath and realize that the support you provide is priceless.

CAREGIVING TIP: Make a list of all of the names, phone numbers, and email addresses of everyone on the cancer care team and put it in a place where it’s readily available, should you need it. Make copies for anyone who is supporting you in your caregiver role.

4. Relax your mind, recharge your body

It can be easy to feel overwhelmed by the tasks of caregiving. Mini-breaks are an easy way to replenish your energy and lower your stress. Try simple activities like taking a walk around the block or closing your eyes for 10 minutes in a comfortable chair. You are working hard to provide and secure the best care for your loved one. Time spent recharging your mind and body will allow you to avoid depression, major illness, or burnout.

5. Take comfort in others

It’s common for many caregivers to feel a loss of personal time over the course of their loved one’s illness. Keep in mind that while you are taking on new and additional responsibilities, you are still allowed a life of your own. Many seasoned caregivers advise that you continue to be involved with your circle of friends and family.

6. Plan for the future

A common feeling among caregivers and people with cancer is uncertainty. It’s hard to know what the future holds. While planning may be difficult, it can help. Try to schedule fun activities on days when your loved one is not feeling the side effects of treatment. You can also give yourselves something to look forward to by planning together how you will celebrate the end of treatment, or a portion of treatment.

Planning for a future in the long-term is also important. All of us, whether we have been diagnosed with cancer or not, should have in place necessary paperwork such as healthcare agent, power of attorney, and a will. You can ask your loved one if he or she needs, or wants, assistance. Having essential paperwork under control will allow you to have peace of mind.

7. Accept a helping hand

It’s okay to have “helpers.” In fact, you may find that learning to let go and to say “YES!” will ease your anxiety and lift your spirits. People often want to chip in, but aren’t quite sure what type of assistance you need. It’s helpful to keep a list of all caregiving tasks, both small and large. That way, when someone asks “Is there anything I can do?” you are able to offer them specific choices.

One simple way to organize a helping network is to create a MyLifeLine Friends & Family Site for your loved one. This free service from the Cancer Support Community allows you and your loved one to connect with family members, friends, and others in your support network. When you create a Friends & Family site, you gain access to a tool called the Helping Calendar. You can use this tool to coordinate help for a variety of events, from rides to doctor’s appointments to meals, childcare, and more.

8. Be mindful of your health

In order to be strong for your loved one, you need to take care of yourself. It’s easy to lose sight of your own health when you’re focused on your loved one. But if your own health is in jeopardy, who will take care of your loved one? Be sure to tend to any physical ailments of your own that arise. This includes scheduling regular checkups and screenings. And, just like your mother told you, eat well and get enough sleep.

Visit our virtual Kitchen, where you can explore recipes and healthy cooking videos. These recipes were created to support the nutritional needs of people impacted by cancer, but anyone can enjoy their health benefits.

9. Consider exploring stress-management techniques

Even if you’ve never practiced mind-body exercises before, you may find that meditation, yoga, listening to music, or simply breathing deeply will relieve your stress. If this interests you, seek out guidance or instruction to help you become your own “expert” on entering into a peaceful, rejuvenated state.

Mind-body (or stress-reduction) interventions use a variety of techniques to help you relax mentally and physically. Examples include meditation, guided imagery, and healing therapies that tap your creative outlets such as art, music, or dance. For help with relaxing and unwinding, visit our virtual Mind Body Studio for yoga lessons, gentle exercises, and meditation videos.

10. Do what you can, admit what you can’t

No one can do everything. It’s okay to acknowledge your limits. Come to terms with feeling overwhelmed (it will happen) and resolve to be firm when deciding what you can and cannot handle on your own, because no one should have to face cancer alone.

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Erma’s Caregiver Story: The Extent of a Support System

Colorful umbrellas strung up in the sky

Stock photo by Ulises Baga for Unsplash

MyLifeLine provided Erma and her husband a way to share treatment updates with their personal support network, all in one place.

 

When Erma’s husband Shelby was diagnosed with stage 4 colorectal cancer, saying they were both stunned would be an understatement. Shelby was an active and healthy individual who had regular physicals and checkups. They thought they were doing everything right when their lives were turned upside down.

At the beginning of Shelby’s diagnosis, Erma recalled that it felt very personal. “You start out in the beginning like, ‘Why me? Why me, Lord. Why did God pick on me?’ That has all changed now. We’ve worked through that. It’s not like life picked on you. Life just happened.”

It took Erma some time to get to the point of acceptance of what she and Shelby were enduring. She had to take on new roles and responsibilities after her husband’s cancer diagnosis and Erma was left in charge of their dog, house, vehicles, insurance, driving, making sure bills were paid and all of her husband’s appointments were booked while he focused on his cancer diagnosis.

In addition to all her other responsibilities, she also had to update friends and family about Shelby’s condition. Each of these new tasks that came with her husband’s diagnosis began to overwhelm Erma and she realized she needed help.

“I realized shortly, within the first few months of his chemo treatment, that I somehow had to shake the feeling that was still a hold of me because my husband was totally zoning out,” Erma reflected.

Erma began seeing a counselor through her husband’s cancer center. She worked through her struggles with Shelby’s diagnosis and her new responsibilities as a caregiver, and she came to terms with what she was facing.

During a wait for one of her husband’s many doctor appointments, Erma noticed a postcard sitting next to her. It was about MyLifeLine, CSC’s online support community for people impacted by cancer. Erma picked up the card, put it in her purse, and went online within the next couple days to give it a try. She was overwhelmed with updating friends and family of Shelby’s condition through email. Today she sees MyLifeLine as an important part of their cancer journey.

“I almost look at MyLifeLine as part of his treatment. Whatever happens to him, MyLifeLine gets updated,” Erma said. “I felt more connected. I felt the support. I felt the love from everyone we knew. It changed my whole outlook, truly.”

Erma has some advice for other caregivers. “You as an individual must have a support system. Secondly, you must learn how to use it. My support system was there from the beginning. I just didn’t think I needed it. People would ask me how I was doing and I would always say ‘I’m good, I’m fine, just a little tired,’ when in reality I was drowning.”

Once Erma started leaning on her support system and using it, she began to understand what she was up against. The support has been constant for Erma, and she said it has truly made a difference.