Caring for Caregivers
There are many kinds of caregivers—family members, close friends, home healthcare people, and health professionals who do caregiving work. Each kind of caregiving has its own joys and challenges. As we develop this part of the website, we'll address many forms of caregiving, but let's start with the most intimate—care provided by a spouse, partner, or family member.
We know from over three decades of work in the Commonweal Cancer Help Program that a cancer diagnosis can be at least as hard on the spouse, partner, parent, or child as it is on the person with the cancer diagnosis. But while the person with cancer tends to get the focus of attention, the person doing the caregiving is often considered a distant second.
Cancer-Fighting Kitchen Course
Join BCCT and you’ll be granted access to Commonweal’s Cancer-Fighting Kitchen course free of charge. CFK is a comprehensive course including detailed information and delicious recipes, along with culinary skills and techniques that will support a nourishing experience during treatment and recovery.
Caring for Yourself
You need support and care as much as your loved one does. You may be facing the stress of a job, other family responsibilities, and your own health issues. Your responsibilities for home and income may have increased, And you may be experiencing shock, grief, and disbelief at how much your life has changed. You won’t be able to do a lot for your loved one if you burn out. So doing whatever you can to take care of yourself is not a luxury. You might consider it a responsibility. Give it some thought.
One way to take care of yourself is to follow more of our 7 Healing Practices. Another way is to schedule time off for yourself. A third way is to find or create a healing circle with other caregivers. You can learn more about healing circles at our sister site, Healing Circles Global.
Even when people are getting the best of cancer treatment, they often feel like they need more help with organizing their care and managing symptoms and side effects. Helpsy empowers members to take control of their health through a real-time virtual nurse support service. This service is available via mobile devices, a Helpsy website and automated phone calls.
Our experience is that caregivers often benefit greatly from having their own separate healing circle. Briefly, Healing Circles has developed a simple way to create deep healing in groups of any size, especially “circles of two” and circles of up to fifteen or so.
Essential Agreements for Healing Circles
Healing Circles has created a set of agreements that create a sense of safe space for any group drawn to deep intentional healing work. They work for a circle of people with cancer, a circle of caregivers, a circle of people with cancer and their significant others, or any other circle that needs to go deep for healing. The agreements are often read at the beginning of each circle as a reminder of what keeps the circle safe. They include:
- We treat each other with kindness and respect.
- We listen with compassion and curiosity.
- We honor each other’s unique ways to healing and don’t presume to advise or fix or try to save each other.
- We hold all stories shared in the circle in confidence.
- We trust that each of us has the guidance we need within us, and we rely on the power of silence to access it.
Note one key agreement is “don’t advise or fix.” This can be hard for any of us watching someone we love make choices we wouldn’t make. There is a place for advising outside a healing circle, but not in it.
Commentary: Insights from a Caregiver
Commonweal Cancer Help Program alumna Deborah Baker shares some of her insights from caring for her husband. All are welcome to add your own insights in the Comments section below.
Practices that were already in place prior to my husband’s diagnosis that were crucial to our individual & collective well being:
- Yoga & daily stretching
- Working out with a personal trainer twice a week + regular cardio
- Meditating together twice a day
- Each of us had a therapist that we spoke with on a regular basis
- Monthly massages
Post-diagnosis practices & resources that were helpful for both of us:
- Organizing all of the necessary information about his disease and treatment
- Keeping a detailed, shared calendar both on paper and online
- Preparing questions for every doctor's appointment; I always went with him and took notes
- Cancer-Fighting Kitchen by Katz & Edelson; this was like our Bible when he was in chemotherapy and it was how we learned about the Cancer Help Program at Commonweal
- Workshops on specific cancer-related topics sponsored by our hospital, Kaiser Permanente Hawaii. We did not attend these workshops until 13 months after his diagnosis. Until that time, we did not think they would be useful. We realized that it was a big mistake.
- Visits from his siblings, his niece, his cousin, close friends, my sisters
- Calls, emails from extended family & friends
- Family gatherings with our local hanai (adopted) family
- Three trips to the Mainland to see family and friends
- We went on short vacations prior to the start of his chemotherapy and in celebration of the end it
- Went to a lawyer to create Living Wills and Health Directives
- Lengthy conversations with our financial planner
- Visits from his siblings
My own practices & resources:
- I retired 3 months after his diagnosis
- Time alone in nature, particularly on the beach
- Talking to my youngest sister almost every weekend; talking with a couple of close friends
- Developing spiritual practices for the first time
- Writing a journal
- Reading: Anti Cancer, After Cancer Care, Being Mortal, no death no fear, Kitchen Table Wisdom
- Reading & writing poetry for the first time
- Kept detailed notes on every rainbow I saw from my lanai in an attempt to practice mindfulness
- I started sewing again after 40 years.
- Continued to study ikebana
- I tried to start a CCHP online caregivers support group; it was unsuccessful
Asking for Help
People want to be asked and they have to be asked. No one wanted to intrude, even family, especially since I made it seem like I was handling everything, which kept everyone at a distance. Therefore, the very challenging first step is the private admission and acceptance that you need help. In my case, I knew I probably knew I needed help, but I didn't ask because I had no idea what to ask for. Thus, I needed to ask for help figuring out how to ask for help and identifying what kinds of help I might need. A network of many voices in this conversation would have been helpful because everyone brings different perspectives and experience to the conversation. I think I also completely lost track of the fact that it would have helped close friends and family cope with the trauma of his diagnosis if they felt as if they were being helpful rather than just being loving spectators. I know they probably would have felt better.
Hindsight is 20/20
I took a trip by myself to Chicago to play with my sisters and one of my best friends. It was the only time I left my husband alone although his brother was staying with him for 5 out of the 7 days I was gone. My husband died after his brother got on the plane and prior to my scheduled return. I wish I had been willing to take a trip like this much earlier after his diagnosis. I think it would have been a marvelous respite by giving me a chance to check in with myself, to play and remember the joys of life, and to be surrounded by people who loved me and were primarily concerned with my well being.
Prior to attending the Cancer Help Program in October after his chemotherapy was finished, I essentially did not go online to look for resources of any kind. Besides the cookbook, I did not read very much at all about his cancer, about alternative therapies, about what happens with chemotherapy ….. I constantly evaluated and questioned the information from his oncologist and whatever my husband learned. We had thoroughly investigated the credentials of the oncologist and always asked very detailed and specific questions. However, I essentially trusted the oncologist as well as my husband's judgment. I know that my trust was not misplaced; however, in retrospect, I know that I was in deep shock and denial. As a woman with a PhD, reading and doing research has been embedded in my life's work.
Letter to a Beloved with Cancer
Our life has changed seemingly from one moment to the next and it feels as if we are both grappling with how to deal with the cancer diagnosis and how to relate to each other. All of a sudden, I am your caregiver and I want to do whatever it takes to protect you, to comfort and reassure you, and to make your life as healing and stress-free as possible. 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.
There are many practical ways that I can provide support: help to prepare for medical appointments, go with you and take notes; organize your medications; keep a calendar of appointments; provide or arrange transportation; run errands; do your household chores; provide updates to family and friends; assist with any related paperwork; do research about your cancer and/or find books that you would find helpful; meditate and/or exercise together; cook healing meals; plan some vacations/trips....
To be a good caregiver, however, I do need your help as well. To begin, I would like us to figure out who can be part of your support team. Although I would like to be able to do everything, I know it would jeopardize my health & well-being which would turn me into an ineffective caregiver. There are many people who love and care about you and are also impacted by your diagnosis. Let's find ways for them to support us both. It will make them feel better to know they are doing something useful for you and reducing the stress for me. For a support team to work, we need to identify what kinds of things need to be done. If you really don't know how I and/or the support, team can help you, then please just tell me. It gives us a place to start; we can figure it out together as partners.
If you hesitate to ask for anything because you don't want to burden me or make life more difficult, please understand that the lack of information is much more stressful and can be overwhelming. It would mean that I have to try to second guess how you are feeling and/or anticipate what you need. As your caregiver, I also need some feedback about what kinds of things are working and what isn't. Your needs will change over time and it's important to let me know when they do.
Finally, beloved, we are on separate journeys and yours is one I cannot completely understand. There will be times when I am exhausted and confused, angry and upset, frightened or hurt because you are not behaving in ways that I am used to or your body is not responding the way we want it to; don't forget that those are also the moments that speak to the depth of my love and caring for you.
Social Support Resources for Caregivers
- National Cancer Institute: Caring for the Caregiver
- My Cancer Circle: What Can I Do to Help?
- Healing Circles
- Leukemia & Lymphoma Society: Caregiver Support
- American Cancer Society: If You’re About to Become a Cancer Caregiver
- Cancer Support Community: Caregivers: Remember Your Needs
- ASCO Cancer Net: Caregivers Taking Care of Themselves
- American Association of Retired Persons (AARP) Family Caregiving/Care Guides: Help Caring for a Loved One with Cancer
- Houts PS, Bucher JA. Caregiving: A Step-By-Step Resource for Caring for the Person with Cancer at Home
- The Mesothelioma Group: Being a Mesothelioma Caregiver
- Pfizer Inc Living with Cancer: Livingwith App
- Caregiver Action Network
- Share the Care: Caregivers & Concerned Friends
- Senior Navigator. Caregiving
- Taylor C. Supporting the carers of individuals affected by colorectal cancer. British Journal of Nursing. 2008 Feb 28-Mar 12;17(4):226-30.
- A survey of 896 caregivers participating in the American Cancer Society Quality of Life Survey for Caregivers concluded that 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. Kim Y, Schulz R, Carver CS. Benefit-finding in the cancer caregiving experience. Psychosomatic Medicine. 2007 Apr;69(3):283-91.
- A related needs assessment of family caregivers of cancer survivors reported that 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. Kim 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.
- Atlas of Caregiving: Atlas CareMap
- Helpsy Inc.: Helpsy Health
- Triagecancer.org: Finances
- Martin L. Rossman, MD: Fighting Cancer from Within
- BCCT: Get Help: Healing Circles: Share Your Experience
- American Society of Clinical Oncology: Cancer.Net
- Donald I. Abrams, MD, and Andrew T. Weil, MD: Integrative Oncology, 2nd Edition
- American Institute for Cancer Research: Cancer Health Check
- Keith I. Block, MD: Life over Cancer: The Block Center Program for Integrative Cancer Treatment
- Lorenzo Cohen and Alison Jefferies: Anticancer Living: Transform Your Life and Health with the Mix of Six
- Jonathan Simon: Acupuncture in Cancer Care
- Commonweal: Healing Circles
- Memorial Sloan Kettering Cancer Center: About Herbs, Botanicals and Other Products
- Michael Lerner: Choices In Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer
- Jeremy R. Geffen, MD, FACP: The Journey through Cancer: An Oncologist's Seven-Level Program for Healing and Transforming the Whole Person
- Fang Fu, Huaijuan Zhao, Feng Tong, and Iris Chi: A Systematic Review of Psychosocial Interventions to Cancer Caregivers
- CancerCare: My Cancer Circle
- Cancer Support Community
- National Comprehensive Cancer Network Patient and Caregiver Resources
- Hillingdon Oncology & Palliative Care Team : Coping with Stress: The Distress Thermometer
- Belleruth Naparstek: Belleruth Naparstek
- David Zuniga, PhD: Guided Meditation for Cancer Patients and Caregivers HD
- O. Carl Simonton, MD, James Creighton, PhD, and Stephanie Matthews Simonton: Getting Well Again
- Joan Borysenko, PhD: Minding the Body, Mending the Mind
- Norman Cousins: Head First: The Biology of Hope and the Healing Power of the Human Spirit
- Lawrence LeShan, PhD: Cancer as a Turning Point
- Martin L. Rossman, MD: Fighting Cancer
- Belleruth Naparstek: A Guided Meditation to Help with Concentration, Focus & Learning
- Peter S. Houts, PhD, and Julia A. Bucher, RN, PhD: Caregiving: A Step-By-Step Resource for Caring for the Person with Cancer at Home
- Dr. Leslie Schover: Will2Love