Caregiver Guide

Caregiver guide at a glance

Effective caregiving is essential to the physical and emotional well-being of people with cancer. While it may feel challenging as a caregiver to tend to your own needs as well as your loved one’s, nurturing your resilience and well-being will benefit your partner as much as it will you. 

This guide offers helpful insights on how to approach caregiving from a whole person perspective. It covers practical insights and suggests the lifestyle practices and complementary therapies that could support your resilience as a caregiver. The good news is that the many approaches you can take to find healing and balance can also be helpful for your loved one. 

What you’ll find in this guide: 

• The challenges and growth opportunities of caregiving
• Take care of your needs: a caregiver’s list of needs
• Have conversations before a crisis
• Therapies and practices supporting caregiver resilience

Links to helpful external resources can be found on our resources page.

Words of guidance

Read words of inspiration and guidance from Michael Lerner, CancerChoices co-founder and author of Choices in Healing.

The challenges and growth opportunities of caregiving

Although caregiving can be rewarding in many ways, if you experience emotional strain, you are not alone: more than 40% of caregivers of people with cancer report depression, and more than 45% report anxiety.¹Geng HM, Chuang DM et al. Prevalence and determinants of depression in caregivers of cancer patients: a systematic review and meta-analysis. Medicine (Baltimore). 2018 Sep;97(39):e11863. 50% report being highly stressed.²National Alliance for Caregiving. Research Report: Cancer Caregiving in the US. June 2016. You may find yourself balancing your new role as a caregiver with the stress of a job, other family responsibilities, and your own health issues. Your responsibilities related to your home and providing income may have increased. You may also experience difficult emotions around how much your own life has changed. 

At the same time, there are opportunities for profound growth and expansion as a caregiver. For some, the caregiving process deepens the relationship with their loved one with cancer. Many find that they grow the most during life’s most significant challenges. During such times, you may achieve things you once thought impossible. You may emerge from periods of difficulty with new understanding, enhanced compassion, and a deeper connection to others who are also struggling. You may also gain confidence from observing your own capacity to change, expand your mind and heart, and be with your loved one and the world in new ways. 

To move through the challenges and find the rewards of caregiving, you need support.  

Take care of your needs: a caregiver’s list of needs

You have your own physical, emotional, mental, and spiritual needs, which need to be considered. Consider Miki Kashtan’s Caregivers List of Needs as you think about how to nurture your resilience as a caregiver.

Caregivers’ list of needs

I need to take care of myself. 

I need support from others. I recognize the limits of my own endurance and strength.

I need some balance in my life that might include maintaining facets of my own life that do not include the person I care for.

I need spaces where I can express all of my feelings, including the most difficult ones. 

I need honest and direct communication with my loved one about both of our needs as we negotiate care. 

I need consideration, affection, forgiveness, and acceptance for what I do.

I need to take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

I need to find ways of preparing to sustain me in the time when my loved one no longer needs my full-time help.

I need societal commitment to support caregivers.

I need self-acceptance: to remember that I have needs, limits, and feelings, regardless of how much I love the person I care for, how committed I am to them, or how strong I am.

I need a solid relationship of trust and collaboration with my loved one. 

Give yourself breaks to the extent possible. Even a few minutes can help. The American Cancer Society recommends that caregivers try to take time out for each of these three kinds of breaks:³American Cancer Society. If You’re About to Become a Cancer Caregiver. October 31, 2019. Viewed December 19, 2021.

• Breaks that involve meeting people, like having lunch with a friend
• Breaks that give you a sense of accomplishment, like finishing a project or exercising
• Breaks that make you feel good or relaxed, like watching a favorite movie or taking a walk 

Questions to consider:

Can you continue doing activities that bring you joy and meaning?

Can you schedule something relaxing and nurturing for yourself every day? 

Monitor and address caregiver fatigue

Fatigue is a common symptom experienced by people with cancer and caregivers alike. Caregiver fatigue occurs when the caregiver feels physically or emotionally exhausted, often leading to a change in attitude. Neglecting your mental and physical health and allowing long-term stress to linger can result in caregiver burnout.⁴Stringfellow A. What is Caregiver Fatigue? Seniorlink Blog. March 11, 2019. Viewed May 17, 2022. Preventing fatigue or addressing it when it first arises with good self-care is essential for the well-being of both you and your loved one.

Many therapies and practices that are helpful to a person with cancer can also be beneficial for managing caregiver fatigue including:

• Exercise
• Cognitive behavioral therapy
• Mindfulness practices
• Yoga  

Feeling overwhelmed and tired sometimes is normal, but if you feel overwhelmed constantly, counseling and psychotherapy are worth considering, particularly if you are struggling to cope with difficult emotions like depression, anxiety, and hopelessness. Ask your loved one’s oncology team for a palliative care referral. If payment is a concern, free helplines are available. See our Resources for help. 

Take time off work if possible

In the US, the Family and Medical Leave Act (FMLA) requires employers with 50 or more employees to provide up to 12 weeks of unpaid, job-protected leave for employees who need time off to care for a seriously ill family member.

Share your feelings with others

During times of change and challenge, processing your emotions with a therapist, spiritual leader or a trusted friend can be of tremendous help. Simply being able to share your experiences and feelings can relieve stress, especially if you feel that there are some things you can’t say to your loved one. 

Talking with other caregivers may help you feel less isolated and learn about coping methods that have helped others. Finding a support group or healing circle with other caregivers can be a space to explore the challenges and joys of life that only other caregivers can understand. 

Similarly, if your situation allows, consider joining a retreat for people with cancer and their caregivers to be in a healing environment, doing healing practices and sharing with others who are walking a similar path.

Seek (and accept) practical help

Reducing your workload is smart and benefits your loved one. We encourage you to get practical help early on, before you become overwhelmed. Although about a third of cancer caregivers feel that respite services – support from a professional caregiver or family or friends – could be helpful, only 15% of caregivers use them.⁵National Alliance for Caregiving. Research Report: Cancer Caregiving in the US. June 2016. 

Your circle of family, friends, co-workers, and other communities may include some people who would be happy to help you and your loved one. Oftentimes, people would like to help but aren’t sure what to offer, so requesting help with specific tasks can help both you and them. If people you ask aren’t able to help you themselves, perhaps they know of others who can. 

Questions to consider:

1. Can you reach out for help, especially with tasks others can easily do, like shopping, walking the dog, or doing laundry?
2. Can you hire or tap volunteers to take over some tasks? 

Read Deborah Baker: Insights from a Caregiver for reflections on accepting help and the benefit of sharing with others and more. 

Have conversations before a crisis

While it can be tempting to put off difficult topics, you may need to talk with your loved one about what kind of care they want should they lose their ability to direct their own medical care. This may include decisions at the end of life, such as where they want to be cared for and the extent of measures to prolong life. These conversations may be very stressful, but it’s better to plan ahead rather than to feel rushed and ill-prepared should circumstances change.

These conversations, especially when guided by a professional trained in advance care planning facilitation, can help your loved one make their decisions in advance and communicate them with their healthcare agent and other loved ones. Then it is not up to others to make these decisions for their loved one, but rather to make sure the person’s decisions are honored.   

To make an appointment to talk to an advance care planning facilitator, start with your loved one’s doctor. Medicare now pays primary care practitioners to have this conversation with patients annually. Advance care planning facilitators include oncology social workers, hospice and palliative care teams,  and trained advance care planning facilitators. 

Other conversations you may need to have with your loved one involve managing your home and finances, the status of your loved one’s estate, any legal or financial obligations or circumstances you need to be aware of, and care of children, other dependents, or pets.

Questions to consider:

1. Can you ask your loved one if they are ready to have serious conversations?
2. Can you be respectful and inviting of conversations about difficult topics?

Therapies and practices supporting caregiver resilience

Incorporating healthy lifestyle practices and complementary therapies can be beneficial in promoting overall wellness and resilience and in managing depression, anxiety, and fatigue. 

The 7 Lifestyle Practices

The 7 Lifestyle Practices can benefit both caregivers and people with cancer. They help support your well-being and build your physical, emotional, mental, and spiritual resilience, nurturing your whole being. You might start with an area that appeals to you, then branch out as you can. Finding ways to incorporate these practices in your life will also help to incorporate them into your loved one’s life. 

Of all of the therapies and practices CancerChoices reviews, the core lifestyle practices have the most solid evidence of benefit.  These practices complement and enhance each other: for example, sharing love and support may reduce stress, and eating well may improve sleep. Exploring what matters now may help you develop and embrace a new or expanded sense of meaning and purpose as you walk your caregiving path. 

As CancerChocies Co-founder Michael Lerner shares in his letter, self care is about caring for yourself. “Treat yourself kindly. Take care of your own mind, body, and soul. Consider our 7 Lifestyle Practices for yourself. So often all the love and support is directed to the person with cancer, and the caregiver needs it, too.”

Complementary therapies

Many complementary therapies support the 7 Lifestyle Practices, primarily to reduce stress and adding more movement. The therapies we list here are generally considered safe, and many are affordable and easy to access. All of the following therapies are also beneficial for your loved one with cancer. 

Therapies to explore include: 

• Guided imagery, meditation, breathwork and relaxation techniques promote calm and centeredness through visualization, stillness, focused breathing, and related practices.
  • Free resources can be found via YouTube videos or meditation apps, such as the Insight Timer app.
• Healing touch and Reiki use intentional touch and energy-focused methods to support relaxation and overall well-being.
  • Although self-Reiki and Healing Touch are possible, most people see a trained practitioner.  
  • Listen to the podcast with Marion Werner for a self-Reiki practice 
• Yoga, Tai chi and Qigong use mindful movement, controlled breathing, and gentle postures to support relaxation, balance, and overall well-being.
  • Youtube videos are a great way to find recorded sessions from practitioners. You can also look locally for in-person classes. An increasing number of hospitals also host classes.  
• Support groups and Healing Circles offer opportunities to connect with others on a similar path. Support groups involve sharing and giving advice, while Healing Circles focus on sharing experiences and learning from one another without offering advice.
  • Healing Circles Global hosts a specific group for caring for a loved one with cancer. Support groups can be found both locally and virtually. Search for them at your hospital or peruse our resources page for additional leads.  
• Cognitive Behavioral Therapy (CBT) helps individuals identify and adjust unhelpful thoughts and behaviors, offering structured strategies to manage challenges and support overall well-being.
  • Ask the hospital for a referral, or find a therapist through an online search. 

Read Maisie Greer’s reflections in Weaving Circles of Love on both the challenges and the personal growth she experienced while caregiving for her mother-in-law during the final year of her life.  

Explore whole person cancer care resources