5 Tips for the Cancer Caregiver
by Deborah J. Cornwall
Caregivers are at the center of the cancer experience, though they’re often invisible. Everyone asks how the person in treatment is doing, but people just assume that you, the caregiver, are fine, because they see you soldiering on.
Everyone who is diagnosed with cancer needs an engaged caregiver who will manage access to treatments, sustain some normalcy day-to-day, and fuel hope for a cancer-free future. If you’re new to the caregiver role, here is some advice to help you get the lay of the land.
Effective caregiving requires deliberate planning.
Caregivers become experts at both planning and improvising, going with the flow and inventing new ways to solve unexpected problems. Just as you plan for other major life events, like graduations and weddings, you also need to plan for caregiving, even if you are dropped into the role without warning and have no idea what’s to come.
Cancer caregiving involves a three-way partnership among the person in treatment, the caregiver, and the healthcare team. To make the partnership work well, a caregiver needs to serve as an active information conduit. Ask questions that the person in treatment may be too sick, tired, or frightened to ask. Take detailed notes at every doctor’s visit; don’t assume that your loved one will digest or remember everything that’s said. And push back respectfully when necessary. If the medical team isn’t prepared for this approach, keep looking until you find a medical team that expects such interaction.
Caregivers become experts at both planning and improvising, going with the flow and inventing new ways to solve unexpected problems.
Discuss early with your loved one how much information each of you wants to receive about the illness, its progression, chances of recurrence, and the relative threat to survival.
Don’t try to be Superman or Superwoman.
No caregiver can do the job alone. Friends usually want to help, and they generally don’t pull away unless the caregiver makes it hard to get close.
Both you and your loved one need friends, now more than ever, and there’s no way to know how long the caregiving role will last. It could be a few weeks or more than 20 years. You may well need friends and their help later on, especially if you experience caregiver fatigue. Remind your friends that you’re determined to maintain your social connections, even if your visits with them are shorter or closer to home.
Learn early about hospital resources (both social services and palliative care) to streamline your caregiving, improve comfort for your loved one, and help you cope with the unexpected. Use online tools (like LotsaHelpingHands.com or TakeThemAMeal.org) to communicate your needs and organize volunteers easily. You can also keep friends and family members informed about treatment updates and milestones using online tools like CaringBridge.org.
Live as though there’s no tomorrow, even as you fight for tomorrows.
You are both more than the cancer, so make your time together count. Appreciate and take full advantage of the life you have rather than mourning what you’ve lost.
Maintain at least one normal activity from your before-cancer life.
Just like airline crews, who put their oxygen masks on before helping anyone else, caregivers must take care of themselves without feeling guilty or selfish.
Some caregivers engage in physical activities that can be done alone with little planning, like biking or running. Others’ hobbies are more interactive, like book groups or playing in a band. Some endeavors, like writing poetry or painting, provide private moments. What matters is that each activity is a reminder of normalcy and a refreshing stress reliever.
Be prepared for cancer to change your life.
The cancer experience is life changing regardless of its outcome. Caregivers describe it as a wake-up call about what’s important. Some say they developed patience for the first time and now appreciate the little things – the family trip that made them forget about the cancer for a little while, seeing their loved one cradling her first grandchild, or the thoughtful neighbor who always knew the right moment to mow the lawn or take the kids to the movies.
Caregiver resilience is a tribute to the power of the human spirit to do superhuman things, maintain hope in the face of adversity, and heal in surprising ways. Caregivers never forget the experience, but they are often surprised by their own strength, resourcefulness, and adaptability.
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Deborah Cornwall is the author of Things I Wish I’d Known: Cancer Caregivers Speak Out, a book based on interviews with cancer caregivers and survivors. She is also an experienced advocate on behalf of cancer survivors and their families, working with the American Cancer Society and the Cancer Action Network. For more information about Deborah, or to purchase her book, visit ThingsIWishIdKnown.com.
This article was published in Coping® with Cancer magazine, January/February 2013.