Many of us are called to provide care for loved ones at some stage – whether for our children, parents, or spouse. Without having gone to medical school (and lacking a mastery of insurance nomenclature), the whole process of navigating hospitals, prognoses, and options can feel overwhelming. Taking care of the people closest to us can require a special dose of energy and intention – but it doesn’t have to be as stressful as you might think.
City of Hope is a not-for-profit cancer treatment center located just outside Los Angeles known world-wide for progressive, compassionate patient care. City of Hope goes out of the way to care for, educate and include the family and caretakers that surround each patient. We asked their leading experts, Dr. Betty Ferrell and Natalie Schnaitmann, to weigh in on the difficult balance of being a caretaker. Here are eight truths for caregivers to keep in mind.
Don’t be a martyr
It’s not helpful to run yourself into the ground caregiving. Your patient will start to worry more about you than their own healing. Give yourself permission to take care of yourself too, and to find joy and respite wherever it’s offered. It’s not selfish, and doing so will give you the ability to better care for your loved one. Millions of airline attendants can’t be wrong: Always put on your own mask before helping others.
Don’t do too much
It’s easy to fall into obligation mode, and do what we think we “should” do, rather than what the patient actually wants or needs. It’s important to promote a person’s independence, especially when they’ve lost so much of it. Offer choices when possible, no matter how simple. If the only thing you have left to choose is the color of the socks you want to wear, it becomes a pretty important choice.
Be a team
Determine which decisions you should make together, and which you should make independently. Figure out which family tasks can be shared. Outline your needs. Consider how others can help you. You need to know and communicate your limits, and then ask for, and accept, help.
Be aware of communication styles
If your loved one is undergoing cancer treatment, there will inevitably be stress around difficult topics, decision-making, the juggling of many roles, and the fact that you might not feel intimately connected. Be aware that people communicate differently, and those differences are heightened when scared, stressed, in pain, and quite possibly on heavy medication. Some people like to talk things out, or do busywork, others focus inward. Remind yourself that everyone reacts differently and then have grace.
Have a strategy for bringing up hard topics
You may determine that your loved one needs a different doctor or therapy. Your partner may have worries about losing independence or being perceived as weak. When you need to discuss a difficult topic, practice what you’ll say in advance and understand that your loved one may not want to hear what you have to say. It helps to make your goals for the conversation clear – explain up front why you’re having this talk and what you hope will come of it. Allow time for your loved one to speak uninterrupted, and listen. But don’t expect to settle everything with one talk.
Deal with the difficult emotions
Things bubble up. It’s highly likely that what you are feeling is entirely normal – this is a stressful time! Be honest with yourself. It can be very helpful to talk with a professional, or another caregiver who has gone through the same things, to normalize your experiences. You may want to take steps toward forgiving deep wounds in your family, without being dependent upon somebody else’s response, or at least toward forgiving yourself.
Tell the truth and don’t lie
Sounds obvious, right? Hiding information or lying about a prognosis can create isolation, mistrust and depression. There is frequently the misguided wish to protect a loved one, which robs them of the opportunity to make choices. Often patients have a sense of what is going on in their own body and it is very disconcerting when others deny that.
Change the atmosphere
Even amidst realistic medical information, create room for love, laughter, shared memories, real connection, and a shift to hope.
Great Reading Resources:
Help Wanted: Caregiver: A Guide to Helping Your Loved One Cope With Serious Illness. By Laura J. Pinchot.
The Complete Bedside Companion: A No-Nonsense Guide to Caring for the Seriously Ill. By Rodger McFarlane.
For The Women We Love: A Breast Cancer Action Plan and Caregiver’s Guide for Men. By Matthew Loscalzo.
How to Help Children Through a Parent’s Serious Illness: Supportive, Practical Advice from a Leading Child Life Specialist. By Kathleen McCue and Ron Bonn
When a Parent Has Cancer: A Guide to Caring for Your Children. By Wendy S. Harpham, MD
Betty Ferrell Ph.D. R.N.N. is the Director of Nursing Research and Education and Natalie Schnaitmann L.C.S.W. is Director of Patient Special Services, Sheri & Les Biller Patient and Family Resource Center.