Caregiver Handbook

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.

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.

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 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. ⁴National 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.⁵Support 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:⁶American 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,⁷Ferrell 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.

Helpful links