Being a Caregiver for a Cancer Patient
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
MAY 17, 2021
Rosalynn Carter, the former First Lady, once commented that there are four kinds of people in the world: those who have been caregivers, those who are caregivers, those who will be caregivers, and those who do or will need care. This is sobering, but certainly relevant as we think about living with cancer.
Remember that caregiving is a marathon, not a sprint.
Many cancer patients need care only briefly or sporadically. This would include during recovery from surgery, following an intense treatment like a bone marrow transplant or intermittently during a course of chemotherapy. Needs are variable and usually not demanding in these situations. Patients may need help with showering after surgery; it is difficult to manage drains or bandages or restrictions about movement and get clean. We may need someone to cook meals, do the laundry and bring us tea and snacks. We may need rides home from the hospital or pick-ups of medications. Since these jobs don’t usually require special skills or take enormous amounts of time, most people manage fairly well. Family members are usually willing to pitch in and friends can be enlisted to help with specific tasks.
Caregiving becomes more complicated during long periods of need. Fortunately for many, if not most, cancer patients, this is never an issue. For some, however, during an especially rigorous treatment or living with advanced disease, there is great need. As we all know, hospital stays are more brief and restricted than they were in the past. I remember when very ill people were admitted for the last weeks of their lives, and there was flexibility about the lengths of those stays. The rules are different now. There is always a discharge plan, but it may fall heavily on families. During this past year of the pandemic, some people have been more reluctant to go into rehab or other long-term care facilities. Others have been concerned about having help in their homes, noting that these people come and go and are exposed to the world in worrisome ways. Many families manage by hiring help at home.
Sometimes it is not possible to bring in additional people to help at home and sometimes the needs just don’t match with their skillsets. If care is mostly custodial vs. skilled, and this means assistance with daily routines rather than nursing needs, few insurances will help with the costs. Sometimes the need is mostly for supervision or just company 24/7, and family members feel they can provide the care. Even the most loving, responsible and faithful families get tired. Adding caregiver responsibilities to already busy lives take a toll. Larger families can share the job, with each person taking specified hours or days. The work falls most heavily on those who do the job alone. Since a patient’s needs are constant, it is common for nights to be interrupted to help your loved one get to the bathroom or take scheduled medications. Fatigue makes everything harder.
Nothing can make this easy, but there are some ways to make it a little easier. First, remember that caregiving is a marathon, not a sprint, and it is necessary to plan for a longer time. Any of us can do almost anything for a week or two, but we can’t maintain that pace for months. As trite as it sounds, take care of yourself. It is imperative to follow the standard rules of self-care (sleep, diet, exercise) and to take some breaks. Getting out for a daily walk and a bi-weekly coffee with a friend will help. Most patients can safely be alone for a few hours. If yours can’t, consider asking a friend or neighbor for short coverage.
Find support. There are many caregiver groups, usually now online, that will help. You can Google "caregiver support groups" or find support groups here.
It always helps to talk with others sharing a similar situation, and you will likely feel less alone and learn some new coping strategies. It may also be smart to talk with an experienced therapist who can support and understand you. BIDMC's cancer support group can help you identify a good person.
This last tip parallels the first: Be easy on yourself. No one can do this perfectly and having bad moments or days is inevitable. Occasionally feeling overwhelmed, anxious or angry goes with the territory. It is completely normal to sometimes experience these uncomfortable feelings, but there will be better days ahead.