Cancer and Caregiving
I posted a few weeks ago about the Adolescent and Young Adult Cancer Summit that is taking place tomorrow (February 9th) at City of Hope. I have to privilege of speaking to caregivers at the summit, and wanted to shine a light on the role of caregiving today.
Being a caregiver to a loved one with cancer (or any chronic illness) is an incredible challenge. Not only do you go through your own identity changes, but often your relationship with the person who is sick and in need of care changes as well. Many caregivers find themselves juggling an incredible amount between home, work, school, caregiving, their own health issues…the list can go on and on.
There’s no rule book for this – for balancing your role as spouse/caregiver, friend/caregiver, parent/caregiver. And yet here I am, proposing “rules” for those of you out there in this role. But really these rules are meant to challenge conventional thinking about what it means to be a caregiver. The following is an excerpt from an article I wrote several years ago for Coping Magazine, if you would like to read the full article (all 5 rules!), you can find it here.
Rule # 1: No, you really don’t have to do it all.
Autonomy is important to all of us. Even when we are sick, many people find meaning in maintaining independence. In fact, this can be healing and motivating for those in treatment for cancer, and help them maintain a connection to the life they are working to regain.
When you, as a caregiver, take on more than is necessary, this will neither improve your loved one’s situation nor help with your own survival. Take an opportunity to sit down with your loved one and talk about which tasks and activities are most important to them, what they hope to continue doing, and what they need help with. This will likely be an ongoing conversation, as needs and abilities are likely to change for both of you depending on the stage of treatment or recovery.
Rule # 2: Ask for and accept help.
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. Many well-intentioned people offer help that is not actually helpful, or shy away from offering any help at all. If that happens to you, don’t take offense, just redirect them toward something they can do that will actually be helpful to you or your loved one.
“But I never know what to say when people ask how they can help!”
No problem, set aside some time to sit down with your loved one and make a list – yes, an actual list – of the tasks you may need help with – nothing is off limits! Running errands, caring for pets or children, bringing over dinner, keeping someone company, yardwork even! Plan to revise it regularly. Then the next time someone offers help, grab your list and offer a way for them to pitch in.
Rule # 3: You matter too!
This is not fluff, this is real.
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. 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. 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, because you matter too.