At-Home Cancer Care: How To Find and Hire Help
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
OCTOBER 14, 2020
Many people going through cancer treatment never need additional assistance at home. Fortunately, medicine in general and cancer care in specific have improved greatly over the years, and there are now strategies to minimize and manage almost all situations. I am thinking, for example, of chemotherapy. When I began to work in Cancer World forty years ago, most chemo patients were violently ill and miserable. We handed out emesis basins as they finished an infusion, knowing they probably would be vomiting before reaching their car. Now many, if not most, people never vomit as the anti-nausea drugs are so effective. Other common side effects like fatigue are usually not debilitating and limiting extra tasks and responsibilities may be the only solution needed.
An exception would be recovery after surgery. There are big differences among different surgeries, and it is much harder to heal from a Whipple than from a lumpectomy. Also, someone with additional medical or physical issues may have a harder time with the post-surgical period. Usually, your surgeon's office will arrange a nurse from a visiting nurse agency (VNA), who can check on you and help with tasks like drains or organizing meds. A visiting nurse, however, does not stay for an extended period, and some people may need more help with activities of daily living (ADLs). Fortunately, most people recover from surgery fairly comfortably and smoothly, and this is a short-term problem.
Some are fortunate to have family or friends who can help as needed. However, even if you live with your family, it may be tough for them to provide what you need in addition to carrying on with their normal lives and obligations. You may also need help that a family member is not trained to provide. This could include physical therapy or skilled nursing tasks. Finally, if your family is generally able to give you what you need, there may be times when they are unavailable or just need a break.
What then? How do you find the right people to provide the needed care? It is a big deal to invite someone into your home to help you; it is important that the person be competent, and that you like them. You don't have to be best friends, but you do have to be comfortable in one another's company, and you have to trust their skills and overall honesty.
There are also finances and logistics to consider. It is often disappointing and upsetting to learn that your medical insurance does not fully cover the help you need at home. Before you commit to hiring any help, clarify what your insurance will or will not cover. If you have long-term care insurance, you probably have the coverage you need, or, at least, almost the coverage you need. There are agencies that provide help at lower cost, and there are some financial resources available to help cancer patients.
To learn more about financial assistance resources, speak with an oncology social worker or check out CancerCare's helpful list of financial assistance resources. If you are setting up home help for yourself or a family member who is currently hospitalized, there will be a Case Manger on the floor whose responsibility includes helping with these arrangements. Ask to speak with them.
Think as specifically as you can about the kind of help that you need. Generally speaking, there are several categories of help available:
- RNs provide skilled nursing care.
- LPNs can help with physical care, but have limited ability to deliver medication or help with more complicated needs.
- Home health aides help with physical care and household tasks that are directly related to a patient's needs. For example, they can change the sheets on the bed or make a light meal, but they can't clean the house or do errands.
- Homemakers help with general housework, cooking, and may be able to run errands.
- Childcare workers can care for your children.
There are two general ways to hire any help: through an agency or independently.
Agencies are more expensive but can provide back-up coverage if the regular person is unable to fill a shift and have already vetted their employees. Hiring someone yourself is less costly but comes with some risks. It is easier now to find potential at-home help because of online services and apps such as Care.com, but you then need to take on screening and checking references. Sometimes it is possible to use your own networks; ask people whom you know, inquire at your church or synagogue, ask the staff at the doctor's office for suggestions. A personal recommendation will help you feel more comfortable.
When you interview a possible caregiver, be completely honest about your needs and your home situation. Find out what tasks s/he is prepared to do and whether there is any flexibility around those jobs. Pay attention to your instincts and only hire someone with whom you feel comfortable. Remember that this is not etched in stone, and you can change your mind if the match does not work well.