Caregiver Handbook: Finding support for yourself - CancerChoices



Finding support for yourself

Taking care of yourself is as important as taking care of your loved one

As a caregiver/care partner, you need support and care as much as your loved one with cancer does. You may experience shock, grief, and disbelief as you learn about and share your loved one’s experience and difficulties. In addition, you may find yourself needing to balance 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. Caregivers commonly feel anxiety, frustration, fear, anger, sadness, depression, hopelessness, guilt, or a feeling of isolation as they move through their journeys, stepping into and adapting to many new roles and situations while caring for their loved ones.

Fatigue

Caregivers can also experience fatigue. Caregiver fatigue occurs when the caregiver feels physically, emotionally, and physically 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.1Stringfellow A. What is Caregiver Fatigue? Seniorlink Blog. March 11, 2019. Viewed May 17, 2022. Caregivers often give priority to the health and well-being of their loved one needing care, forgetting to care for themselves. 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.

Risk factors for caregiver fatigue include these:2Mayo Clinic staff: Caregiver stress: tips for taking care of yourself. Mayo Clinic. March 22, 2022. Viewed May 24, 2022.

Being female

Having fewer years of formal education

Living with the person you are caring for

Social isolation

Having depression

Financial difficulties

Higher number of hours spent caregiving

Lack of coping skills and difficulty solving problems

Lack of choice in being a caregiver

These situations may trigger or worsen caregiver fatigue:3Stringfellow A. What is Caregiver Fatigue? Seniorlink Blog. March 11, 2019. Viewed May 24, 2022. 

Role strain, feeling overwhelmed and unable to perform a caregiver role to the best of your ability

Unreasonable demands from your care recipient, other family members, work, or other sources)

Unrealistic expectations

Lack of control including lack of resources for caregiving, such as time or money

Poor health

Self care

Taking care of yourself may feel like “extra” work, but you won’t be able to do as much for your loved one if you burn out. Taking care of yourself really isn’t a luxury. 

Tending to your own physical, mental, and emotional well-being and resilience will put you in a better position to provide care. You’ll also have better mental energy to respond and adapt when you encounter something unexpected. Learning new tasks will likely be easier, and you may feel less irritable and overwhelmed.

Caregiving can be challenging, but caring for yourself will provide a better experience for you and your loved one. Learn some techniques and practices that can help you manage your stress response.

Find practices and therapies that may help you manage fatigue.

When people with cancer have better symptom management, their caregivers may also experience less sleep disruption. A couple of studies have found that treating people with cancer with acupressure to manage symptoms can improve their caregiver’s sleep quality.4Lee KC, Chao YC, Lin YP, Wang HC. Effectiveness of self-administered acupressure for family caregivers of advanced cancer patients with insomnia: a randomized controlled trial. Cancer Nursing. 2022 Jan-Feb 01;45(1):E1-E9; Wu TT, Pan HW et al. Concomitant benefits of an auricular acupressure intervention for women with cancer on family caregiver sleep quality. Cancer Nursing. 2021 Sep-Oct 01;44(5):E323-E330.

Explore your many options

What effectively recharges your batteries or lightens your workload may be quite different from what another caregiver finds to be nurturing and supportive. 

Question to consider:

  • Are you listening to your own feedback and letting your intuition guide you as you care for yourself while you care for your loved one?

Share your feelings with others

Talking with other caregivers may help you to feel less isolated and to learn about coping methods that have helped others and may help you as well. 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. We invite you to learn more about how Sharing Love and Support, one of our 7 Lifestyle Practices, nurtures the well-being not only of people with cancer but also the people caring for them. Also see specific support resources below.

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. Also, others may have skills that you don’t have. Although about a third of cancer caregivers feel that respite services 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. See many specific resources below. 

Questions to consider

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

Aim to tend to your own needs

Taking care of your mind, body, and spirit throughout your caregiving journey will, in the long-term, allow you to be a more effective caregiver. We understand, though, that there are times when your loved one needs you almost 24/7, and putting yourself first, even for very short periods, may be very difficult or impossible. Even when you have a bit more time away from your loved one, you may feel guilty putting your needs first. 

As you develop self-care habits that work for you, you will feel the benefits. The National Cancer Institute encourages caregivers to take at least fifteen to thirty minutes a day to do things for themselves if possible.6Support for Caregivers of Cancer Patients. National Cancer Institute. August 6, 2020. Viewed December 28, 2021.

Question to consider: 

  • Are you achieving a healthy balance in meeting both your loved one’s needs and your needs?
Tips for taking breaks

The American Cancer Society recommends that caregivers try to take time out for each of these three kinds of breaks:7American 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

Therapies and practices supporting caregiver health and wellness 

If you suspect you are experiencing anxiety, depression, sleep disruption, changes in appetite, unmanageable stress, or other difficult symptoms, or if you simply want to boost your own wellness and resilience, you may find help from conventional, complementary, and self-care approaches.

Conventional care

We, as well as the American Society of Clinical Oncology,8Ferrell BR, Temel JS et al. Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. Journal of Clinical Oncology. 2017 Jan;35(1):96-112. encourage you to ask your loved one’s oncology team for a palliative care referral if you feel that you are suffering. 

Feeling overwhelmed sometimes is normal, but if you feel overwhelmed constantly, you may need to see a mental health professional. Counseling and psychotherapy may be worth considering if one-on-one support feels more comfortable to you and if you feel you are struggling to cope with difficult emotions like depression, anxiety, grief, or guilt. If payment is a concern, free helplines are available. See Resources below.

Signs that you should seek professional help include feeling depressed, ill, or hopeless, feeling like hurting yourself or your loved ones, depending on alcohol or recreational drugs, fighting with family members and others, and not being able to take care of yourself.  

Self care

The 7 Lifestyle Practices can benefit caregivers as well as people with cancer. They will help boost your well-being and build your physical, emotional, mental, and spiritual resilience, nurturing your whole being.

7 Lifestyle Practices

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 to develop and embrace a new or expanded sense of meaning and purpose as you walk your caregiving path. Even within these practices, you can honor what feels right to you: for example, many options are available for moving more, managing stress, and eating well, and you can experiment and see which actions feel most comfortable, enjoyable, and beneficial. 

Complementary care

Not much research has been done regarding therapies to improve the quality of life specific to caregivers, but you may find help with therapies shown here. Note that the therapies we list here are generally considered safe and many are considered affordable and easy to access.  

Guided imagery

Less anxiety, sadness, and tension among parents of hospitalized children receiving guided imagery (preliminary evidencesignificant effects in small or poorly designed clinical studies OR conflicting results in adequate studies but a preponderance of evidence of an effect (this is the CancerChoices definition; other researchers and studies may define this differently))

Less distress among caregivers of people with cancer participating in a guided imagery intervention (weak evidenceone or more case studies, supported by animal evidence OR small treatment effects of limited clinical significance OR studies with no controls OR weak trends of effects (this is the CancerChoices definition; other researchers and studies may define this differently))

Healing touch

Less fatigue, pain, and stress among parents and caregivers of children with cancer receiving healing touch (preliminary evidence)

Polarity therapy

Greater vitality and general health, less pain, and less stress among caregivers of people with dementia treated with polarity therapy (preliminary evidence)

Relaxation techniques and training

Less anxiety, sadness, and tension among parents of hospitalized children practicing relaxation techniques (preliminary evidence)

Support groups and interventions

Less mood disturbance among partners of people with early stage breast cancer when the partners participated in a brief psychoeducational group program (preliminary evidence)

Lower stress among bereaved men participating in a bereavement support group (preliminary evidence)

Yoga

Better appetite among caregivers participating in yoga (weak evidence)

Other complementary therapies

Other therapies to consider even without specific research evidence among caregivers.

Symptom handbooks

Also see handbooks providing evidence-based guidance for managing symptoms such as fatigue or sleep disruption.

Helpful links

Support communities and hotlines Learn moreSee Less
Guidance for hired services or volunteer care teams Learn moreSee Less
Support tools Learn moreSee Less

Authors

Maria Williams

Research and Communications Consultant
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Maria Williams is a research and communications consultant who brings over 15 years’ experience in research, consumer education, and science communication to CancerChoices. She has worked primarily in public health and environmental health.

Maria Williams Research and Communications Consultant

Nancy Hepp, MS

Lead Researcher
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Ms. Hepp is a researcher and communicator who has been writing and editing educational content on varied health topics for more than 20 years. She serves as lead researcher and writer for CancerChoices and also served as the first program manager. Her graduate work in research and cognitive psychology, her master’s degree in instructional design, and her certificate in web design have all guided her in writing and presenting information for a wide variety of audiences and uses. Nancy’s service as faculty development coordinator in the Department of Family Medicine at Wright State University also provided experience in medical research, plus insights into medical education and medical care from the professional’s perspective.

Nancy Hepp, MS Lead Researcher

Reviewer

Laura Pole, MSN, RN, OCNS

Senior Clinical Consultant
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Laura Pole is senior clinical consultant for CancerChoices. Laura is an oncology clinical nurse specialist who has been providing integrative oncology clinical care, navigation, consultation, and education services for over 40 years. She is the co-creator and co-coordinator of the Integrative Oncology Navigation Training at Smith Center for Healing and the Arts in Washington, DC. Laura also manages the “Media Watch Cancer News That You Can Use” listserv for Smith Center/Commonweal. In her role as a palliative care educator and consultant, Laura has served as statewide Respecting Choices Faculty for the Virginia POST (Physician Orders for Scope of Treatment) Collaborative as well as provided statewide professional education on palliative and end-of-life care for the Virginia Association for Hospices and Palliative Care.

For CancerChoices, Laura curates content and research, networks with clinical and organizational partners, brings awareness and education of integrative oncology at professional and patient conferences and programs, and translates research into information relevant to the patient experience as well as clinical practice.

Laura sees her work with CancerChoices as a perfect alignment of all her passions, knowledge and skills in integrative oncology care. She is honored to serve you.

Laura Pole, MSN, RN, OCNS Senior Clinical Consultant

Last update: June 25, 2024

Last full resource review: March 2022

CancerChoices provides information about integrative in cancer care, a patient-centered approach combining the best of conventional care, self care and evidence-informed complementary care in an integrated plan cancer care. We review complementaryin cancer care, complementary care involves the use of therapies intended to enhance or add to standard conventional treatments; examples include supplements, mind-body approaches such as yoga or psychosocial therapy, and acupuncture therapies and self-care lifestyle actions and behaviors that may impact cancer outcomes; examples include eating health-promoting foods, limiting alcohol, increasing physical activity, and managing stress practices to help patients and professionals explore and integrate the best combination of conventionalthe cancer care offered by conventionally trained physicians and most hospitals; examples are chemotherapy, surgery, and radiotherapy and complementary therapies and practices for each person.

Our staff have no financial conflicts of interest to declare. We receive no funds from any manufacturers or retailers gaining financial profit by promoting or discouraging therapies mentioned on this site.

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