Deborah Baker: Insights from a Caregiver

Deborah is the widow of a person with cancer and an alumna of the Commonweal Cancer Help Program.

Asking for help

In my case, I knew I probably 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.

The second huge step for me would have been figuring how to actually ask for the help and to accept the help. It would have made a big difference for me, especially in the beginning, if I had asked someone to be that kind of bridge for me. It would have given me some emotional space and a place to watch someone else model it for me so I might have been able to do more myself. It would have helped me feel less overwhelmed and isolated. I could have had one or more people delegated to provide family and friends with medical updates, to do the research that would have given me some things to read, to provide and/or arrange transportation to his chemotherapy treatments, to provide an occasional meal, to do small house maintenance jobs or find someone who could do them, to plan my respites and if someone was visiting, make sure that I took a couple of days away while they stayed with my husband.

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.

Practices and resources

Practices that were already in place prior to my husband’s diagnosis that were crucial to our individual and collective well being:

• Yoga and daily stretching
• Working out with a personal trainer twice a week plus 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 and 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 and 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 and 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 and resources:

• I retired three 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 and 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 forty years
• Continued to study ikebana
• I tried to start a CCHP online caregivers support group; it was unsuccessful

• Reading:

Letter to a beloved with cancer

Dear Beloved,

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 and 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.

Banner photo from Ruth Hennig

Learn more