Caregiver Handbook

Caregiving at a glance

Effective caregiving is essential to the physical and emotional well-being of people with cancer. While it may feel very difficult as a caregiver to tend to your own needs as well as those of your loved one, nurturing your resilience and well-being will benefit your partner as much as yourself. You won’t be able to do as much for your partner if you become exhausted. You may experience times when making time for yourself is impossible, but taking time for yourself when opportunities arise will nurture you and provide relief. During these times, you may share your feelings with others, seek and accept help with practical tasks, and acknowledge and tend to your physical, mental, emotional, and perhaps spiritual needs.

Many find that caregiving involves challenges and rewards. Several strategies foster effective caregiving and may help to address common challenges. If you experience emotional or physical distress like anxiety, depression, appetite changes, and sleep disruption, you may find help from conventional, complementary, and self-care approaches. We also offer a growing collection of stories written by caregivers about their journeys caring for their loved ones with cancer.

Resources

Caregiving overview

Caregivers help to meet the daily physical, practical, and emotional needs of people with cancer. Here we focus on informal or unpaid caregivers—family members, partners, and friends—who may generally be called family caregivers. Many family caregivers live with their loved ones with cancer, but some cancer caregivers may provide long-distance care, providing support by phone and email and/or arranging help from friends and family who do live nearby.

Common caregiving tasks

As a caregiver, you may take on a complex combination of tasks providing medical, physical, communication, practical, and emotional support. Your specific tasks will depend on your loved one’s condition, needs, and circumstances. Your age  and relationship with your loved one play a part. As a caregiver, your tasks and roles may change as your loved one’s needs and condition change.

Caregiving tasks may include these:

Medical support

• Track and/or give medication
• Track and help manage symptoms and side effects 
• Monitor your loved one’s condition and decide when to seek medical help 
• Accompany your loved one to medical appointments 
• Provide proper medical and physical care
• Keep records, including keeping track of items such as these:
  • Medical appointments
  • Test results
  • Medication names and dosages
  • Treatment plans
  • Questions
  • Names and contact information of resources
• If your loved one grants authority, speak for them if they are unable to direct their own medical care. This may include decisions at the end of life.

Communication support

• Coordinate with medical providers, agencies, and health professionals, including these tasks:
  • Relaying information on your loved one’s condition, symptoms, and progress
  • Obtaining information needed to understand and support your loved one’s ongoing medical needs
  • Managing medical and insurance paperwork
  • Advocating on the behalf of your loved one 
  • Making appointments
• Update family members, friends, and others about your loved one’s condition
• Coordinate with others who are sharing caregiving responsibilities

Practical support may include these tasks:

Emotional support 

• Be available to listen to what your loved one shares about their experiences, needs, and preferences, clarify anything that is unclear, and offer understanding and support without judgment or trying to “fix” anything
• Look for signs that your loved one needs help coping with difficult emotions and, if necessary, ask their healthcare team about resources that can help

Family caregivers in the United States spend an average of about 30 hours per week caring for their loved ones with cancer. Most interact with medical providers, agencies, and care professionals on behalf of their loved ones, and about two-thirds advocate on their behalf.¹National Alliance for Caregiving. Research Report: Cancer Caregiving in the US. June 2016. 

Each caregiver’s path is as unique as the individual circumstances faced by the person with cancer. Some caregivers share the responsibility for tasks with other caregivers. For example, friends or members of a club or church might take turns bringing food or caring for children.

Rewards of caregiving: finding meaning, deeper connections, personal growth

Many caregivers find satisfaction, a sense of accomplishment, and even pride in knowing that they are doing as much as they can for their loved ones with cancer, helping improve their well-being and quality of life. For some, the caregiving process deepens the relationship with their loved one with cancer. Working through new situations and challenges together in a respectful way can boost collaboration and communication skills. It can allow both the caregiver and the person with cancer to see and appreciate each other’s qualities in new ways and enhance understanding, empathy, and affection. 

Perhaps you will learn what motivates you, what stresses you, and what best supports both your body and your spirit during a phase of life that may feel very challenging. You might also find yourself re-examining your own sense of purpose and goals in life as you focus your time and energy around your caregiving. 

Many of us find that we grow the most during the hardest times of our lives. During such times we often push ourselves to change, perhaps achieving things we had previously thought were impossible. We may emerge from our periods of difficulty with new understanding, enhanced compassion and connection to others who are also struggling, and deeper humility. Some of us may also gain confidence from observing our own capacity to change, expand our minds and hearts, and be with others and the world in new ways.

Challenges of caregiving: stress, complex and changing roles and relationships

Feeling overwhelmed, burdened, or even trapped while caregiving is normal. If you experience emotional strain, you are not alone: more than 40% of caregivers of people with cancer report depression, more than 45% report anxiety,²Geng 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. and 50% report being highly stressed.³National Alliance for Caregiving. Research Report: Cancer Caregiving in the US. June 2016. You may also experience grief, frustration or anger, feelings of isolation, guilt, or hopelessness. 

Financial stress, balancing caregiving with your job, and having less time for other loved ones may weigh on you. If you have children or pets, caring for them in addition to your loved one with cancer may be difficult or impossible without help. You may feel you don’t have enough time for yourself, not only to work or take care of essential tasks, but to take breaks to exercise, eat well, be in nature, see friends, or do other things that nurture you. Chronic stress may trigger physical symptoms such as fatigue, headaches, and sleep disruption, and you may find that you get sick more often than usual. 

Some caregivers may find themselves taking on the caregiver role even though they have little or no desire or ability to do so. They may feel pressure from family members, friends, or their loved one’s care teams to provide care and feel they have no choice. If you feel uncomfortable about being a caregiver and would like alternatives to be considered, decide on your limits and communicate them as soon as you can. Sharing caregiving duties with someone else may be possible, or finding paid or volunteer help as needed. You may also consider palliative or hospice care if appropriate.

Resources

What strategies support effective caregiving?

Also see Stories from caregivers below.

Strategies that support effective caregiving can be organized into several areas: respectful communication, maintaining appropriate boundaries, being open to learning and growth, being dependable but also kind to yourself, addressing important issues, and taking time together for joy and relaxation. 

We offer some suggestions to consider if you would like support in any of these areas. These guidelines are very general. Your specific circumstances, your personality and your loved one’s personality, and the nature of your relationship will determine which, if any, of the suggestions may help you. If you would like individualized support for specific issues or concerns, you might try reaching out to support hotlines, social workers, or support groups. Listings are available below in Finding support for yourself ›

Respectful communication

Embracing clear and kind communication and leaving your loved one in control may help to minimize tension, conflicts, misunderstandings, and feelings of isolation. Clearly expressing feelings and concerns and listening actively without making judgments or assumptions can go a long way in maintaining a positive, proactive, and supportive connection between you and your loved one with cancer. 

Questions to consider:

• Can I assure my loved one that they will be a central part of all discussions?
• Can I acknowledge that an adult with cancer has the right to make decisions about their life and their care, as their physical and mental condition allow? 
• Am I being honest and respectful in my communication? 

It may help to remember that everyone handles things in their own way. Try to be open about stress and its causes: perhaps you can share how you are each coping, look at things that are causing both of you stress, talk about choices you can make together, and try to nurture gratitude for each other. 

Maintaining boundaries

Respecting the needs of the person with cancer

As far as possible, allow your loved one some freedom and understand your role as a helper. People with cancer often need to maintain a feeling of independence even while receiving care. Aim to offer choices when you can. At the same time, try to understand and accept your loved one’s limitations. These limitations may be physical, mental, or emotional, and may change day by day or moment to moment. 

Questions to consider:

• Do I honor my loved one’s ability to make choices as a basic freedom?
• Do I allow my loved one to do all the tasks they are able to do?
• Do I ask how I can be most helpful instead of making assumptions?

If your loved one expresses anger or frustration, try to understand where this is coming from. They may just be releasing their stress, fears, and worries in the moment and they may not actually be angry with you. 

Respecting the caregiver’s needs

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 myself 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. Feeling stressed, sometimes very deeply, is normal and there are tools that may help. See Finding support for yourself › below.

Questions to consider:

• Can I schedule something relaxing and nurturing for myself every day? 
• Can I continue doing activities that bring me joy and meaning? 

Be gentle with yourself: know that we all make mistakes or feel anxious in stressful situations. Crying or expressing your feelings with kindness is healthy. It’s okay to prioritize the most important tasks and let go of tasks that are not critical.

Being open to learning and growth

Being open to learning—about your loved one’s cancer, new tasks and responsibilities, and yourself—may make it easier to grow into your role as a caregiver. Time permitting, try to educate yourself about the cancer experience, both generally and specifically for your loved one.

As far as you are comfortable, consider asking your loved one questions about their thoughts and experience, respecting that some topics may be difficult for them to speak about. 

Try to be open to learning new tasks like providing medical or physical care, handling paperwork and keeping records, monitoring symptoms and treatment progress, and coordinating with health professionals and others who provide care and support. There may be a learning curve, but resources can guide you.

You will likely experience a range of emotions during your caregiving journey. No caregiver is perfect. Collaborate with your loved one to set realistic expectations of yourself, try to be open to any feedback, and be willing to reflect, learn, and grow. Also, be aware that your role and responsibilities may shift as your loved one’s needs and concerns shift. 

Questions to consider:

• Do I give myself time and space to identify and process my feelings?
• Can I identify my strengths and weaknesses as a caregiver? 

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.

Being dependable but also kind to yourself 

Your loved one needs to be able to rely on you, even though they may find it emotionally difficult to do so. 

Questions to consider:

• Can I identify my own limits and capabilities?
• Do I make promises I won’t be able to keep?

It’s easy for others to tell you to take care of yourself, but making this happen can be difficult if your caregiving demands are high. Remember that caregiving is a team effort, and your loved one may feel less guilty if you aren’t carrying the bulk of the tasks. Many caregivers say that they did too much on their own.⁴National Cancer Institute. Support for Cancer Caregivers: Caring for the Caregiver. National Institutes of Health. October 2019. p. 4. Viewed December 20, 2021. See suggestions below in Finding support for yourself ›

Conversations before the 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 allow your loved one to make their decisions ahead of time and communicate these decisions 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:

• Can I ask my loved one if they are ready to have serious conversations?
• Can I be respectful and inviting of conversations about difficult topics?

Taking time together for joy and relaxation

In addition to taking time out for yourself, include your loved one in activities that provide meaning or pleasure if possible. Make time to focus on things other than cancer. We all need time with our loved ones to simply enjoy each other’s company, to relax, and to laugh together if possible. This may be impossible on some days. But if circumstances allow, try to schedule time for relaxation.

Resources

Finding support for yourself

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

As a caregiver, 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.

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 isn’t really 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.

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:

• Am I listening to my own feedback and letting my intuition guide me as I care for myself as I care for my 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 Healing 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 sides. 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 I reach out for help, especially with tasks others can easily do like shopping, walking the dog, or doing laundry?
• Can I 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: 

• Am I achieving a healthy balance in meeting both my loved one’s needs and my 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 Healing 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 Healing 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.  

Other complementary therapies

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

Symptom handbooks

Resources

Stories from caregivers

Deborah Baker: insights from a caregiver

Deborah is the widow of a person with cancer and an alumna of the Commonweal Cancer Help Program. She shared her story, including learning to figure out what help she needed and then to ask for help.

Excerpts:

On asking for help: No one wanted to intrude, even family, especially since I made it seem like I was handling everything. I knew I probably needed help, but I didn’t ask because I had no idea what to ask for.

I have learned about the serious limitations and consequences of not giving myself permission to ask for help and for not knowing how and what to ask for.

On joining a support group: Until the Cancer Help Program, I did not want to join a caregiver’s support group online and I did not pursue finding a local one. I was aware of them, but I could not imagine how it would have helped me. I wish I had pursued finding a local group to attend.

On how she views caregiving: I want to surround you with love, to listen to you, to laugh and cry with you on this journey. I think of my caregiving as an amazing opportunity to show you how much I love you. I am grateful for the gift of being able to care for you, physically and emotionally.

Stories

Deborah Baker: Insights from a Caregiver

Read Deborah’s full story of caring for her husband with cancer.

Maisie Greer

We were going to stay positive, fill ourselves and everyone around us with love, and believe wholeheartedly that Robynn would be that slim-chance survivor. Our childlike hope for a miracle was real and it drove our decisions and actions throughout the months that followed. I am deeply grateful for our friends and family who let us hang onto that dream. Although possibly naïve, it encouraged us to be present, a practice that continues to shape our lives.

Stories

Maisie Greer: Weaving Circles of Love

Read Maisie’s full story of caring for her mother-in-law with brain cancer.

Claire Robson: words from a caregiver

I didn’t have cancer. I didn’t undergo chemo or surgery. I wasn’t faced with the prospect of death, but still, I lived with those realities every day, usually keeping my fears and sadness to myself.

Read Claire’s story of caring for her wife with metastatic cancer on the Healing Circles website

Resources

Are you a health professional?

Clinical practice guidelines

The American Society of Clinical Oncology’s clinical practice guidelines on palliative recommends that nurses, social workers, or other providers may initiate caregiver-tailored palliative care support for family or friend caregivers providing care at home or outside a health facility to people with cancer at any stage.

Distress among cancer caregivers

Emotional distress among caregivers is common.⁹Geng 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; van Warmerdam J, Zabih V et al. Prevalence of anxiety, depression, and posttraumatic stress disorder in parents of children with cancer: a meta-analysis. Pediatric Blood & Cancer. 2019 Jun;66(6):e27677. Both caregivers and their loved ones with cancer benefit from paired psychosocial interventions targeting self-care and interpersonal connections of caregivers and symptom management of patients.¹⁰Fu F, Zhao H, Tong F, Chi I. A systematic review of psychosocial interventions to cancer caregivers. Frontiers in Psychology. 2017 May 23;8:834.

Caregivers can benefit from interventions that enhance their ability to accept their situation and find meaning in their caregiving experience. This may improve their satisfaction with life and reduce their depressive symptoms.¹¹Kim Y, Schulz R, Carver CS. Benefit-finding in the cancer caregiving experience. Psychosomatic Medicine. 2007 Apr;69(3):283-91. Interventions designed to help caregivers manage their own emotional distress as well as the survivors’ distress can help them find meaning in the cancer caregiving experience and foster supportive familial relationships that will benefit the caregivers quality of life, not only during the time of diagnosis and treatment, but for years afterward.¹²Kim Y, Kashy DA, Spillers RL, Evans TV. Needs assessment of family caregivers of cancer survivors: three cohorts comparison. Psychooncology. 2010 Jun;19(6):573-82.

Professional resources

Practical and therapeutic support for caregivers

Dalton J, Thomas S, Harden M, Eastwood A, Parker G. Updated meta-review of evidence on support for carers. Journal of Health Services Research & Policy. 2018 Jul;23(3):196-207.

Sheng N, Ma J, Ding W, Zhang Y. Effects of caregiver-involved interventions on the quality of life of children and adolescents with chronic conditions and their caregivers: a systematic review and meta-analysis. Quality of Life Research. 2019 Jan;28(1):13-33.

Tang WP, Chan CW, Leung DP, Chan DS. The effects of psychoeducational interventions on caregivers of children with cancer: a meta-analysis of randomized controlled trials. Journal of Child Health Care. 2020 Mar;24(1):123-142.

Taylor C. Supporting the carers of individuals affected by colorectal cancer. British Journal of Nursing. 2008 Feb 28-Mar 12;17(4):226-30.

Young J, Snowden A. A systematic review on the factors associated with positive experiences in carers of someone with cancer. European Journal of Cancer Care. 2017 May;26(3).

Langenberg SMCH, van Herpen CML et al. Caregivers’ burden and fatigue during and after patients’ treatment with concomitant chemoradiotherapy for locally advanced head and neck cancer: a prospective, observational pilot study. Support Care Cancer. 2019 Nov;27(11):4145-4154.

Kang SG, Song SW et al. Fatigue and mental status of caregivers of severely chronically ill patients. Pain Research and Management. 2020 Sep 7;2020:6372857.

Clark MM, Atherton PJ et al. Caregivers of patients with cancer fatigue: a high level of symptom burden. American Journal of Hospice & Palliative Care. 2014 Mar;31(2):121-5. 

Jensen S, Given B. Fatigue affecting family caregivers of cancer patients. Support Care Cancer. 1993 Nov;1(6):321-5.