This is the first of a 2 part series….read Part 2 here.
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.
1. Control: It’s Gone in a Flash
As we mature in life, we get used to being “fixers”. We solve problems, answer questions, get things done, and plan ahead. We start to revel in the fact that our lives are in control, and we make plans . . . for a career, a family, a full life. Then may come the unexpected diagnosis of cancer for ourselves or a loved one. The shock is unbelievable for people who haven’t experienced it.
Caregivers all described violent images at the moment of hearing the “C” word. They describe being socked in the gut, or being in a car crash, or being totally lost and drowning at sea. Their images are all of dependence on people they don’t know and don’t even see for rescue. Most described themselves like one-handed jugglers, trying to balance the patient and themselves, hard information with instincts, long-term considerations with day-to-day issues, and medical emergencies with the demands of day-to-day life. They experience constant anxiety, without having time to relieve their stress or even take a deep breath.
Such stresses can actually shorten the caregivers’ lives by as much as 10 years, but those who get through find ways to focus on those aspects of the cancer experience that they can control. For example:
- Several used websites like www.lotsahelpinghands.org to arrange for friends to bring meals, or provide rides to treatment, or help with their kids’ extracurricular activities, so as to free up their schedules for caregiving. Others used sites like www.caringbridge.org as a way of reducing the number of people to whom they had to provide status updates, finding it easier to use the website to post news for reading by a predetermined distribution list.
- Samantha’s mother got to know the hospital staff and gathered information from them, so she could share information between departments and shorten the period of time that her two-year-old daughter was hospitalized for each leukemia chemotherapy treatment.
- Even though planning for death was an event that caregivers didn’t welcome, some embraced it as a way of helping the patient and the family. Bill (whose professional expertise was international public health) knew he was dying, and so while he was still mobile, he took an around-the-world tour with his wife, to say good-bye and to thank those who had enriched his life. Several others ensured that their loved one could be at home, in a favorite spot, with a favorite view, accompanied by loved ones, and feeling neither pain nor anxiety.
Control. It disappears in an instant, but it can be re-created in new (partial) forms.
2. Hope: It’s Elusive
Hope is about belief in the possible. Read that again: the possible. It’s not about wishes, or dreams, or prayers, all of which have their important roles, but none of which is anchored in reality. Reality may not be pretty, so sustaining hope will require that you have practical and achievable goals, so you make the best of a difficult situation.
Your goal might be a cure so the patient becomes cancer free, or turning the cancer into a chronic disease that is treatable and controllable for a lifetime. It might be simply prolonging life, or increasing the patient’s comfort and reducing anxiety. The cancer is what it is: it’s a nasty predator that reacts differently to each treatment in each person. So confronting that reality is what will allow you to set realistic goals.
Despite Tim’s serious stage 4 condition, his wife never confronted the fact that he might die. Perhaps his physicians were using euphemisms, or dodging the issue, so her goals weren’t realistic. As a result, she was stunned when he died.
Similarly, despite Deborah’s declining condition and terminal diagnosis, she and her husband relied on prayer throughout her treatment for Stage 4 inoperable mucinous adenocarcinoma of the lung. Prayer did give them hope. She also wrote positive affirmations and pages of notes to God asking for healing, but she never said goodbye to him or their children. Then, after he called in hospice, her health declined so fast that she was unable to speak or write. He aches for one more conversation or one lasting message from her.
So . . . to sustain hope in the face of reality and to promote healing, caregivers:
- Live every day to the maximum, trying to create something joyful and memorable daily for the patient and the entire family.
- Keep goals in mind and visible to the patient, so they can feel something is being accomplished, even if it means trying to look at the half-full view of the proverbial glass.
- Investigate palliative care early, even if the cancer is survivable. There’s no reason to suffer pain, nausea, or anxiety when you don’t have to.
- Encourage the patient to write letters or keep a journal for later, after the cancer has passed. For some this will mean writing or taping good-byes that won’t necessarily be used. (As Deborah’s husband concluded, “those goodbyes could be like the Rolling Stones’ goodbye tour—going on for years, without obvious end!”) For others unlikely to survive, it will be a message to loved ones about how much their support has meant during the experience, with loving thoughts for reference after their death.
- Embark on deliberate healing strategies to accelerate their recovery, sometimes starting before caregiving even ends.
Sustaining hope may feel hard, but it will create a more positive environment for you than the alternatives.
 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 book based 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.