One patient provides potential caregivers “a guide to help you help me”.
Having lived through cancer and all the ups and downs it comes with, I’ve relied on my caregivers to help me when I cannot help myself. Here are a few ways caregivers can help:
I estimate that only 40 percent of what the oncologist says after I heard the word “cancer” actually registered in my brain. To caregivers in the room at the time of diagnosis: be there to take notes and to ask about suggested treatment protocols, scheduling, also about any possible trials, especially if the cancer is a late stage or a relapse. In my case, both my sister and my daughter-in-law were there for me.
If the patient is younger and still working, you as caregiver can help get insurance coverage information from the employer. When she goes for follow-up visits and treatments, be sure the insurance cards go along. If insurance is not going to cover all expenses, ask the patient navigator about financial help. The navigator is often in the best resource to help you find special funds that might be available.
It's also important to be aware of the time needed for treatment and recovery. If the loved one is still working after surgery, what is the allowed recovery time off from work? Many patients with cancer will be on chemotherapy or radiation, maybe both. Is there flex time for that? We all know about “cumulative effects” of these treatments, so recovery takes longer as treatments accumulate. If your loved one has young children, what will be the arrangements for their care?
Treatment details are also important for the caregiver to make note of. What will surgery involve, exactly, and how long will their loved one remain in the hospital for recovery? If chemotherapy is planned, what are the chemicals and their side effects? How many infusions and how often will they occur? What are the side effects of the specific radiation protocol? These are all critical details. Some patients want to know all of it, while others will need to shield themselves and focus on getting through it. You, as a caregiver, will need to know all of it.
If your loved one will be receiving a targeted therapy or immunotherapy, or will be in a clinical trial, find out all you can. Participation in clinical trials requires specific protocols and you want to know up front if your patient will be required to travel long distances for the treatments and/or follow-up visits. Check out www.clinicaltrials.gov if you want to see what your options are. Your patient navigator can provide guidance, as there are thousands of ongoing trials.
Another important part of being a caregiver is saying yes to offers of help. Telling the family, especially young children, about what is going on is tough. This may be your initial role, helping your loved one discover how to do this. Other loved ones and close friends do want to help, but you should be specific in your requests. Rides to doctor appointments and to treatments are critical and if you can delegate some of these, you will be in better shape to keep the big picture in mind. Some helpers might be great at providing meals for the family, someone else invaluable at keeping up with paperwork and insurance forms. Depending on the longevity of the cancer battle, some help may be needed in the home to keep up with basic duties like cooking, cleaning, laundry and grocery shopping. Depending on the season, yard work or snow cleanup is a big help.
Keeping your loved one’s quality of life top of mind is always important, too. Getting your loved one to eat might be tough, but remember, it is most important to eat something rather than focusing on specific nutritional guidelines at this time. The new anti-nausea meds work well for some but not others. Always report any difficulties to the oncologist’s office right away to try and get on top of this issue. Exercise is necessary if possible, be it a walk in the park or even a few laps around the living room.
Most importantly, as a caregiver, your role is to be supportive of your loved one’s hopes and ideas, while helping them navigate day to day life with cancer.