by Ellen Polamero, MSW, LCSW, ACHP-SW, OSW-C
Although I’d like to tell you these are the five definitive rules for all cancer caregivers, the truth is that there really is no rulebook for this experience. When you sit down to read this list (or any other caregiving tips, for that matter), remember that not everything will apply to you and your loved one. This is your journey alone.
And yet, many people have cared for loved ones with cancer before, and you can certainly learn from the experiences of others. My hope is that this list of “rules” will give you insight, ideas, and inspiration as you tackle the challenge of being a cancer caregiver. May it also give you confidence and reassurance that, though this is your journey alone, you are not alone in this journey. With that being said, here are my five rules for cancer caregiving.
Rule # 1: No, you really don’t have to do it all.
Many caregivers step into this role thinking that they need to do everything for their loved one with cancer. But the truth is, autonomy is important to all of us, even people fighting cancer. It’s important for your loved one to maintain some independence and to take part in their own meaningful activities. In fact, this can even be healing for cancer survivors, and you should encourage them to do so when appropriate.
Cancer survivors are often able to keep up with many of their usual tasks and responsibilities, and may indeed want to continue doing some of them. When you, as a caregiver, take on more than is necessary, this will neither improve your loved one’s situation nor help you manage your role as their caregiver. You should sit down with your loved one and talk about which tasks and activities are most important to them, which ones they hope to continue doing, and where they anticipate needing help. This will likely be an ongoing conversation, as cancer survivors don’t always know up front what they will be able to handle, and their capabilities may fluctuate as they move through treatment and recovery.
When people ask if they can help, say yes. When they ask how they can help, tell them – and be specific.
Rule # 2: Ask for and accept help.
While it’s important to encourage your loved one to continue doing those things they can and want to do, it’s also important to seek help from others. When people ask if they can help, say yes. When they ask how they can help, tell them – and be specific. When they offer “unhelpful help,” give them a more helpful alternative.
Most people genuinely want to help during times like these, but they may also struggle to know exactly how to be helpful. Compound that with the fact that every survivor and family has different needs, and you can understand why so many well-intentioned people offer help that is not actually helpful, or shy away from offering any help at all.
Try not to think of accepting help as selfish or self-serving; think of it as giving people the opportunity to express how much they care for you and your loved one through meeting your needs. Friends and family members feel deeply and meaningfully connected when they can provide practical help at a time when it is genuinely needed. They are often looking for opportunities to show their love and concern and will themselves experience gratification from being part of your lives during this time. Allowing people into your lives is a gift given, not just a gift received.
To get yourself over the habit of politely declining help, sit down together with the survivor and make a list – an actual list – of the tasks you may need help with. Plan to revise it regularly. Then the next time someone offers help, reach for your list and let them know how they can be involved.
Rule # 3: Relationships will change.
One of the things you can’t necessarily control is how others respond to you or the survivor during this time. Relationships change when a person goes through a major medical event. While cancer often brings people closer together, it can also create distance in relationships. It’s difficult not to take it personally when someone you love disappears from your life or gives you less support than you expected from them. When this happens, keep in mind that how others respond to you may have more to do with them than with you or the survivor. Understand that some relationships will falter, and it’s not your fault.
Sometimes when friends or family members don’t know how to respond to you or support you, they may react by withdrawing. The longer people have kept their distance, the harder it is for them to reenter your lives. While it’s not your responsibility to draw them back in, reaching out with a brief update and asking for specific help from them may give them the open door they need to reconnect. For close friends and family, it may be worth a small output of effort on your part to create that opportunity to reconnect.
If you let your relationship become primarily about managing cancer, you may lose some of the connection that made this a meaningful relationship in the first place.
Rule # 4: Your original relationship matters.
Whether you were a spouse or partner, friend, or family member before you became caregiver, your relationship deserves attention. It’s important for you and your loved one to talk with each other about how to maintain your relationship in the face of cancer. Think about what made your relationship special before it became that of survivor-caregiver. Find opportunities to continue doing the things you used to enjoy doing together before the diagnosis. Talk about things, aside from cancer, that you care about and that excite you.
If you let your relationship become primarily about managing cancer, you may lose some of the connection that made this a meaningful relationship in the first place. But if you can still enjoy the parts of your relationship that bound you together before cancer, it will help carry you through this period of change.
Rule # 5: : You matter too.
Caregivers tend to feel that their job is to take care of the survivor above all else. Unfortunately, this often means that their own needs get pushed aside.
You may be tempted to think that your feelings are less valid than the survivor’s during this time, but research is clear that cancer caregivers, too, experience a heavy emotional strain and burden. It is common for caregivers to feel sadness, anger, and guilt. But if you don’t take care of yourself, and you let your own health slide – whether physical or emotional – you may not be able to give your loved one the care and support they truly need.
Be selfish sometimes. Find time – even schedule appointments for yourself, if necessary – to exercise, eat well, join a support group, read books you love, watch movies you enjoy, spend time with others who can support you and care for you, go to your own medical appointments, meditate, do yoga, get massages … whatever it is that will recharge your battery so you can be ready and able to continue offering excellent care to your loved one.
When you succeed, celebrate those successes. When you fall short, learn from those mistakes and give yourself another chance. And if you discover new rules along this path, please, share them.
Ellen Polamero has been a clinical social worker in the department of Supportive Care Medicine at City of Hope in Duarte, CA, for the past seven years. Her work at City of Hope has focused primarily on meeting the unique needs of family caregivers, including spouses, during cancer treatment. She has developed and led several psychoeducational groups and classes for caregivers at City of Hope and has presented at national conferences for cancer survivors, family members, and medical professionals.
This article was published in Coping® with Cancer magazine, May/June 2017.