by Deborah J. Cornwall, Author, Things I Wish I’d Known: Cancer Caregivers Speak Out
This is the second of a 2 part series….read part one.
Caregiving is hard. There’s no doubt about it. It’s hard for lots of reasons, not the least of which is that you’re in emotional turmoil most of the time, dealing with unknown and unpredictable variables, in a relentless juggling act, without any certainty about what’s coming around the next bend in the road.
You’re hoping for the best, with no guarantees, and among the choices you have is how you get yourself through. That’s why attitude is so critical, even in a terminal situation.
Those caregivers who were in denial or who felt they would just have to “take it on the chin” through a difficult experience seemed to have the most challenging and protracted healing. Taking it on the chin meant they couldn’t sustain positive energies for their loved ones during treatment. Those who did find ways of coping to some degree actually began their healing during the caregiving process. They approached caregiving as a “chin-up,” make-the-best-of-a-nasty-situation experience.
Interviews with 95 family caregivers for 117 patients with more than 40 different cancer diagnoses from 19 American states and two Canadian provinces revealed four common issues facing family cancer caregivers where caregiver choices can make an enormous difference in how the cancer experience feels:
- Control: It’s gone in a flash
- Hope: It’s elusive
- Isolation: It’s inevitable
- Normalcy: It needs building anew
You can see that the first letters of these words spell “chin.” The choice for caregivers is whether to “take it on the chin” or take a “chin-up” approach, trying to turn lemons into lemonade. Let’s look at each issue and some coping strategies. Last week we looked at Control and Hope, this week we’ll look at Isolation and Normalcy.
3. Isolation: It’s inevitable
Your time is precious; the more serious the cancer, the faster your time gets consumed with caregiving. You feel like a one-handed juggler. You may feel like no one has ever been through what you’re experiencing. You’re stressed, and you’re probably shorting your own sleep and relaxation needs. You may be sneaking time for a support group. The last thing you’re inclined to do is to return another phone call or seek out a social occasion. In addition, you may be experiencing “pull-aways” ― people you thought you could count on, who don’t know what to do or say and so pull away rather than pulling closer to you in your time of need.
The answer for many caregivers was to reach out and to make sure they spent some time outside of the cancer bubble. You are not your loved one’s cancer, and neither is he. Spending some time with others and talking about other things, or not talking at all but just being, can give a feeling of support that’s invaluable in keeping spirits strong. It doesn’t have to be for long — you can call the shots in terms of where, and how long — but your friends will appreciate it, and so will you.
And of course don’t forget to let others help you — whether it’s washing your car, bringing food, or taking the kids for the evening so you can have a night off. It will feel good for you and for them.
4. Normalcy: It needs building anew
Normalcy goes away at the moment of diagnosis, but the yearning for its return doesn’t. Even for those who are declared “cancer-free” or in remission, nothing is ever quite the same. The experience leaves some kind of mark. It may show as anxiety about annual exams and fear of recurrence, or it may show in a long commitment to give back in gratitude for the return of good health. For some, it’s as simple as finding a renewed joy in everyday life and the realization that some things aren’t important enough to worry about, after having experienced the life-changing cancer experience.
The moral offered by the caregivers who were interviewed was to acknowledge what has changed, and honor it. Some found that making a list of what cancer took away and what “gifts” it gave in return is a helpful tool. That doesn’t by any stretch of the imagination mean that they would have chosen it, or that those who lost loved ones felt blessed. But it does mean that there were some learnings or experiences that they had along the way that were meaningful and left positive impacts.
These varied widely ― like Tiffany’s discovering she was pregnant with their second child when her doctor had told her that the heavy chemotherapy that cured her stage 3c colorectal cancer at age 35 made another child unlikely. Or Doug’s physician running into his room to say goodbye, clad in her full U.S. National Guard uniform and boots and a kitten in her arms, only to find that he had already died; his mother still laughs at the recollection and spoils the cat. Or Samantha’s mom’s commitment to raising money for leukemia research 20 years after the end of her daughter’s successful treatment.
For Didier’s young widow, left with a four-year-old and about to deliver their second child, his death proved devastating. Now, three and a half years later, she has realized that she lost herself in the process of caring for him and the children. She has consciously (with coaching) rebuilt her self-confidence, and she’s re-entering the workforce with a new zest for life. She has built a new normal with her children and can be joyful again.
Life will never be the same for most caregivers, no matter the outcome, but the new normal may bring some blessings if you allow them into your life and consciously seek them out. It’s all about recognizing the need to heal, and allowing the process to happen. It’s all about how you aim your chin!
Go back to Part One
 Copyright © 2013, Deborah J. Cornwall. All rights reserved. Used with permission by the Cancer Knowledge Network.
Deborah J. Cornwall is an experienced advocate on behalf of cancer patients and their families. She is the author of Things I Wish I’d Known: Cancer Caregivers Speak Out, a new bookbased on interviews with 86 cancer caregivers and dozens of patients and survivors. For more information or to purchase the book, go to www.thingsiwishidknown.com.