How to Ask for Help As a Cancer Caregiver
Last updated: July 2018
When my first husband, Ahmad, had metastatic bladder cancer, people often said “let me know how I can help.” And while I appreciated their good intentions, I found it difficult to ask for the help I needed. The offers of help were typically broad and generic and I wasn’t sure how to accept them or translate them into practical actions.
I never realized how busy a caregiver to someone with metastatic cancer could be. I took a leave from my job and could not have worked and cared for him simultaneously. Getting to appointments, filling prescriptions, managing pain, managing changing dietary needs and side effects, interacting with home visit professionals – these activities filled my days and nights. I needed help but didn’t know how to get it.
Consider a website for caregivers
I never did use a site such as Caring Bridge but I have heard wonderful things from those who have. If you have many family and friends nearby wanting to help, this may be a good option for organizing the good intentions of your army of supporters. We did not, however, have lots of people nearby. Family was mostly halfway around the world. Friends were spread across a geographic area spanning about 100 miles in all directions. So having a schedule for meal delivery, for instance, wasn’t really practical in our situation. In addition, harsh chemotherapy meant food needs and preferences could change unexpectedly and often.
Be specific in your requests - think about what would help you most
People want to help but they need your guidance to know how they can help. In your caregiving, consider the tasks you do every day. These likely range from the mundane such as laundry to the important such as researching clinical trial options. Then think about which tasks could be outsourced: laundry, probably yes. Research might want to be one you do yourself. (Unless an offer of help is from a family-member oncologist, for instance!)
Maybe a family member or friend could come over and do laundry twice a week. Or maybe they could pay for wash and fold and both pick up and return your laundry to you. Be specific in your requests. And do make requests. I didn’t do this and I realize that I could have made my life easier by outsourcing the mundane.
You might also consider having someone “on call”
One of the things I found most frustrating about caregiving for a patient with metastatic cancer was that our needs were constantly changing: sometimes daily, sometimes hourly. It was often difficult to get the kind of help I needed at the moment that I needed it. For instance, maybe today the patient’s pain is especially severe and he or she needs help getting out of bed. And maybe you are not strong enough to help. Having someone “on call,” either at your home or nearby could be very helpful in those situations. They could just hang out and visit if help is not needed or they could work on the mundane “outsourced” tasks but be present should you need specific help at a specific moment.
How long did it take for you to receive a bladder cancer diagnosis?