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The Oncologist, the Patient and CKN — Sharing Knowledge

How Cancer Caregivers Heal

sunsetby Deborah J. Cornwall, Author, Things I Wish I’d Known: Cancer Caregivers Speak Out

If only healing after cancer were as fast and predictable as recovering from a scratch or bruise. After caregiving ends, you’ll find yourself grieving, regardless of whether your care recipient died, fears potential recurrence, or has been declared cancer free.

Grieving is natural. Your life was turned upside down. You’ve gotten used to a nearly uncontrollable and adrenaline-fueled whirlwind of scheduling, reconfiguring daily life, and solving problems. Then, suddenly, the frenzy stops, and you’re faced with, “What now?”

For many, this transition feels like entering an empty and shapeless place. You’ll have more time now to acknowledge what has happened, which is both a blessing and a curse. You’re bound to experience flashbacks, dreams, and waves of tears when you least expect them, long after the end of acute caregiving. But the emptiness needs to be filled so your life can go on and discover its “new normal.”

Caregivers who’ve been there say that healing required as much conscious and deliberate planning as they devoted to caregiving itself. Their healing drew on eight “R’s:”

1.      Relish Prior Preparation. Healing is best when started before caregiving ends.

Sometimes it happens through the orchestration of how and when a patient dies and how family members interact with him. Other times it happens because the patient anticipates the caregiver’s needs, often in how children are prepared for a parent’s death.

Stephanie was a 35-year oncology nurse when she was dying of a blood cancer. She and her friends ensured that her young-adult son had a safety net of nurses to help answer all of his questions. Then she engaged him in discussion of every aspect of what would come, including how she wanted to be buried (in her full-length fur coat and red high heels). Those discussions were poignant, generous, and loving. They also brought humor and support into his world at just the time he needed them most. Caregivers describe such times as sacred and invaluable to their own later healing.

2.      Respect Yourself. Part of the healing process is being willing to pat yourself on the back and recognize that you did your best, regardless of the outcome. Caregivers whose loved ones died were charged to support and help someone through an unpredictable journey, not to change the outcome. Your best is all you could have done.

Jim’s wife described herself as a “failed caregiver” because the love of her life died seven years ago, even though her caregiving had kept him alive for nine years despite a terminal lymphoma diagnosis. That was a great achievement, but she feels that she should have done better, even in the face of insurmountable odds.

In contrast, after Mike was diagnosed with stage 4 pancreatic cancer over 13 years ago and given a six-week prognosis, his wife kept him alive for 27 months through aggressive caregiving. He enjoyed months of additional quality life, and she describes it as a victory that he died at home without pain or anxiety. She confronted what was happening with open eyes and made sure that every conversation and activity enriched them both and their children. She helped create joy every day, even at the end, so her glass is at least half full today.

3.      Recognize both gains and losses. As time passes, you may adapt to the things that cancer took away and find the downside of the disease ever-present. Shan’s mom could have sued their medical team for its failure to diagnose 24-year-old Shan’s inflammatory breast cancer early enough to save her; instead, she helped them to appreciate the importance of recognizing earlier the signs of cancer in healthy young adults. She made an important choice to go positive. Similarly, Debbie took charge of her healing by listing things that cancer had changed—the things she’d lost as well as the unexpected “gifts” that cancer had brought. When they look back, many caregivers are surprised with how many gifts they find.

4.      Rearrange old rituals. Especially when a family member has died, holidays may be easier if you hold them in a different location or create some new traditions that will allow you to think ahead, rather than backward. Widows and widowers have particular need to plan how they will spend weekends and anniversaries, times when they used to socialize with their spouses and domestic partners. As Joe’s wife said, “The house is empty now. Saturday night comes around every seven days, and I’ll have to learn to deal with it differently.” For some, even daily and weekly routines like food shopping had to change.

5.      Reconnect. Cancer triggers strong emotions. A year after he completed cancer treatment, Brad and his wife were barely speaking. He is a local doctor and had decided alone not to tell even their friends about their cancer ordeal, so his wife felt isolated. As a result, they each withdrew and never discussed their respective feelings during his treatment or thereafter. With the help of an oncology social worker, she talked through her feelings; that evening, he could tell from her body language that something had changed. He reopened dialogue and she responded openly, saving their marriage.

For Jada, an artist and poet, the key was creative expression. Since her father’s pancreatic cancer diagnosis and death, she’s been writing poetry to further explore her relationship with him and to keep his memory fresh. She is preparing a “broken art” memorial exhibit of paintings incorporating fragments of poems that she created in his honor. His presence lives on and inspires her work.

Finally, several caregivers reconnected with themselves, through intense projects (like model-building, photography projects, or even puzzle assembly) which distracted them for short periods during caregiving and gave them a tangible sense of accomplishment. These activities helped them feel a little more whole.

6.      Refresh mind, body, and soul. Several caregivers who had lost loved ones took spontaneous, unplanned road trips to rediscover sides of themselves that they had neglected during caregiving. Combining visits to friends scattered across the country with unstructured visits to new locations and fresh activities allowed them time to reflect, discover new interests, and reignite creativity. They returned home refreshed to live their own lives with renewed energy. For Lorna, reconnecting with nature triggered her healing progress: “There came a point where I realized that hearing the birds gave me joy again. That was a milestone.”

7.      Reinvent yourself. Sometimes healing forces you to re-examine your entire life. Didier’s wife had been a corporate executive and the family’s primary wage-earner; Didier had left the workforce to care for their child. Ten days after his death, she found herself an impoverished single mother responsible for a four-year-old daughter and a newborn son. Now, two years later, she defines herself as a mother who is reinventing her professional life. The values she and Didier shared are at the forefront as she helps her children learn about the father they didn’t really know and simultaneously plans a consulting business to help ordinary citizens understand and access medical services within the evolving healthcare landscape.

8.      Reaffirm caregiving’s meaning. Once they had vented their grief ― whether through talking, writing, painting, or other forms of expression ― many caregivers were determined to ensure that their experiences would make a difference in others’ battles against cancer. They created educational foundations, ran research fund-raising events, engaged in advocacy, and helped local cancer-affected families. They redeployed their caregiving energies to ensure that their loved ones’ cancer struggles would have lasting meaning.

An Indian poet, Rabindranath Tagore, once wrote that Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.He might well have been describing the lives of cancer family caregivers. Despite the wear and tear they sustained during caregiving, most consciously develop a “new normal” that will be enriched by their caregiving learnings.

Healing takes time. It requires purposeful gear-changing, but it’s essential to redefining meaning in your own life. Shan’s mother said it took her five years to rediscover joy in her life: “I worked very hard to get through it, but I’ll never get over it. You work through it to enjoy life again, even though sadness can be triggered at any moment.” Tim’s wife agreed: “I’m surprised to say that I’m getting remarried. It’s been seven years since Tim died. I never thought I’d be happy again, but I’ll also never stop loving him.”

 

 


 

DebCornwallDeborah 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

 

 

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