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Caring for the Caregiver

Elissa Bantug
Elissa Bantug

Speaking at a breast cancer caregiver support group recently, I listened closely as they joked with one another about remaining in the “doghouse“ during the entirety of their wife or girlfriends’ oncology treatments and for several months once active care completed.  Although they were laughing and seemed to be taking it in stride, I could not help but think about my own relationship with my husband during and after treatment.  Was I difficult to get along with?  Did I take out my fears, anger, and frustrations on him?

This was clearly something that was on my mind.  I know many things about how women feel physically and emotionally during and after treatment but is the caregiver perspective something that we are overlooking?  Was I so consumed with my own emotions that I made a futile attempt to take into account my husband’s feelings?   Perhaps I failed to acknowledge that cancer can make significant others’ feel angry, helpless, and frustrated too?

When I returned home that evening, I nonchalantly asked my husband over dinner if he felt like I was difficult to get along with during and after cancer treatment.  My loving and very supportive husband laughed out loud at my question.  When I persisted and said I really wanted to know if I was irrational or short-tempered, he smiled and in a condescending, yet loving, tone said, “you were so awful for months after finishing treatment.”

Although several years have passed since I was a cancer patient, my tone and body language immediately changed, as I defensively started spouting out statements like-“you thought I was healed 15 minutes after treatment ended;” “you had no idea what I was going through;”  and “if you would have done more, I would have been less angry.”  It’s a good thing that even during my more irrational movements (such as asking a question, not liking the answer, and then attacking someone for being honest), I have a loving and caring partner who smiled at me, said that he was glad I was healthy now, and returned to eating his dinner.  Clearly, my husband was trying to not engage with me regarding this line of discussion.

In bed that evening (and still angry), I started thinking about whether I really was “awful” and, if so, why.  I do remember feeling frustrated that my body could not “get with the program” and learn how to be healthy again after treatment ended.  Not to mention I felt sad, angry, and terrified, and alone.

It started to become apparent to me that maybe I did a lousy job of communicating these emotions and learning how to ask for what I needed after treatment.  I have heard lots of cancer survivors complain that when treatment ends, often so too does the extra support.  In my personal experience, asking for specific forms of concrete help--such as driving my daughter’s carpool; attending a doctor’s appointment; or bringing over a meal--may be easier to request while undergoing active care.  Many people, even with the best intentions, carry the assumption that once treatment ends, so do all of the challenges associated with cancer and its treatments.

Below is a list of some tips I have come up that I wish I could have shared with my husband when treatment ended—perhaps they could have eased this transition period for both of us:

  • Try to be patient and remain flexible.  Recovery and healing takes time.  This goes way beyond physical healing.  I personally needed months to work through many emotions such as fear, sadness, anger, and resentment that were generated by my cancer experience.
  • I want to listen too.  My husband shared very little with me about his fears or concerns regarding my diagnosis and treatment.  Honestly, I am not sure these emotions would have been very well-received by me while I was undergoing treatment.  Afterward though, I really wanted to hear how he was doing and what his concerns were as we moved beyond my active cancer care.   
  • Extra help should not end when treatment ends.  The end of active treatment did not mean I was “well;” nor did it mean I was no longer in need of all kinds of help.  In fact, I think my lowest point both physically and emotionally was shortly after I finished all of my treatments.  I wish I had articulated to my husband that I needed him to continue to help out for a little while longer and employ others to pitch in, too.  Many friends and acquaintances offered help in the abstract (Imagine statements like “let me know if you need anything”).  I am personally terrible at asking for help when I need it.  The caregiver can be a great point-person in organizing extra help during and after treatment so all of the effort does not fall on the patient.  When asked if there were things people could do, it would have been great if my husband would have stepped in and said something like, well actually there is.  Organizing specific days for our friends to drive the carpool or bring over a meal would have prevented me from having to feel like it was my responsibility to coordinate everything when I was not at my best.
  • Find your inner child.  Remember to take time to “play.”  This was one thing we did well, and it turned out to be a very significant part of my recovery.  For example, one cold snowy February day when our daughter was at a friend’s house, my husband insisted we go out sledding.  I had not actually played in the snow since I was a small child.  Learning how to play again and find laughter (especially when humor was noticeably absent from the house during this period) became a great medicine for both of us and really assisted in the healing process.
  • Attend one or more follow-up visits.  It is not over when they say it’s over.  Having your partner accompany you to follow-up medical care is a great way for him/her to be involved and for you to feel supported .
  • Remember to be an active listener .  Men (my husband included) really like to fix things.  I wish I could have articulated that it was not his job to “fix” me.  Since my husband is not a miracle worker, he could not make the cancer go away.  Similarly, when he would try to be my cheerleader and say things like “cheer up sweetie, you look great” (when we both knew I looked and felt awful) or “the good news is that most women don’t die from breast cancer” (making me feel like my fears of dying were not valid), I became even more frustrated and isolated.  Sometimes just listening and reassuring your loved one that her fears and concerns are real (and perhaps sharing if you feel that way too) can be what is most helpful.
  • Remember that you’re both on the same team.  With so many fears and emotions following treatment, some patients and caregivers have a hard time connecting.  For months, I felt my husband and I existed in a parallel universe, orbiting around each other but somehow failing to intersect.  We both had to remember that we both yearned for the same things: for me to feel well again.  Figuring out how we could both get there took time and lots of trial and error.
  • Don’t forget to care for yourself.  I think my husband felt embarrassed or that he was being selfish if he asked to engage in personal activities, like going to the gym after work.  Finding ways for the caregiver to care for himself is so important to prevent burnout and caregiver fatigue.
  • Celebrate.  The Friday after my last radiation treatment, my husband and I left our daughter with my mother and went to a bed and breakfast for the weekend.  Although I felt pretty awful over that weekend and had to sleep and rest often, it was great to get away and celebrate how far we both had come over the last difficult six months.

The good news is that most couples move beyond cancer being omnipresent in their lives and in their relationship.  For my husband and me, it actually brought us closer together in the long run. That is not to say we did not have a few very difficult months post-treatment.  There were definitely several disagreements that we both walked away from each other feeling like the other one just did not get it. As I got stronger and my husband started to try and understand how he could be most helpful, we moved beyond that parallel universe of not connecting with each other.

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