We define caregiver as the person who most often helps the person with cancer and is not paid to do so. Professional care providers are paid to give care. They tend to have more limited roles, and are not discussed in detail here.
Caregivers may be partners, family members, or close friends. Most often, they’re not trained for the caregiver job. Many times, they’re the lifeline of the person with cancer.
Caregivers have many roles. These roles change as the patient’s needs change during and after cancer treatment. Today a lot of cancer care is done in outpatient treatment centers and doctors’ offices. This means that sicker people are being cared for at home.
As a caregiver, you have a huge influence – both positive and negative – on how the cancer patient deals with their illness. Your encouragement can help the patient stick with a demanding treatment plan and take other steps to get well, like eating healthy meals or getting enough rest.
The caregiver is part of a cancer care team made up of the patient, other family and friends, and the medical staff. As a caregiver, you may find yourself working closely with the cancer care team, doing things like:
As part of the team, you’ll help coordinate the patient’s care. Caregivers often have to keep track of prescriptions, know which tests are to be done, and make sure all involved doctors know what’s going on. They often find themselves preventing mix-ups and keeping track of paperwork.
A good caregiver is a vital health care resource. In many cases, the caregiver is the one person who knows everything that’s going on with the patient. Don’t be afraid to ask questions and take notes during doctor visits. Learn who the members of the cancer care team are and know how to contact them. Getting the right support and information can help both you and your loved one with cancer.
The person with cancer faces many new challenges. As the caregiver you can help the patient deal with these challenges and get through any problems that come up.
For example, suppose the patient’s white blood counts drop, they develop a fever, and as a result, need to be in the hospital. This can be very upsetting and may be seen as a setback by the family and the patient. The caregiver can:
These kinds of tasks may be too much for the patient to tackle while fighting infection. This kind of help is valuable. It’s a reassuring sign for the patient that this short-term problem can be managed and solved.
There are other day-to-day tasks a caregiver might do. Here are a few things caregivers might help the person with cancer do, or in some cases even do for them:
All of this work costs caregivers time and money. There may also be a cost to the caregiver’s health and well-being, but often the caregiver just keeps doing what needs to be done and may suffer in silence.
You may be glad to put the well-being of the person with cancer above your own well-being. And your love for this person may give you the energy and drive you need to help them through this difficult time. Still, no matter how you feel about it, caregiving is a hard job! And many caregivers are there for their loved one 24 hours a day for months or even years.
Good communication with the person you are caring for is the most important part of your role. It may be hard for the patient to take part in daily planning and decision-making because they’re dealing with the physical, emotional, and social effects of cancer and treatment. Your job is to involve the patient as much as possible, so they know they’re doing their part to get better. Here are some things you can try to do to keep the patient involved:
You might find that the person you’re caring for is acting different – angry, quiet and withdrawn, or just sad. If you think they aren’t talking to you because they want to spare your feelings, make sure they know that you are always open to listening, even about tough topics. If they keep acting very sad or withdrawn, you might want to talk to the cancer care team about what could be causing it and what can be done. Learn more in Emotional, Mental Health, and Mood Changes.
Caregiving at a distance can be even harder to do and can cost more, too. The cost of time, travel, phone calls, missed work, and out-of-pocket expenses are higher when the caregiver doesn’t live close to the person needing care. Sometimes paid “on-site” caregivers are needed, and this can be another large expense.
There’s often increased stress and greater feelings of guilt with long-distance caregiving. You may worry, “What if something happens and I can’t get there right away?” Or, “Who’s going to make sure they ______ (take their medicine, eat, don’t fall, etc.)?” And if you do have family living close to the person with cancer, you might feel guilty that the burden falls on them and you aren’t doing your share.
Along with this, there’s the guilt felt while you’re with the person with cancer: “Who’s going to ______ (pick up the kids from school, cook dinner, walk the dog, etc.) at home while I’m gone?”
You also may feel left out of decisions made by the person with cancer and those who do live nearby. But there are things you can do to help your loved one and take an active role in their care – even when you’re far away.
Try to plan your visits. Once you get there you may be overwhelmed by everything that needs to be done, but having a plan keeps you focused and less stressed. Talk to the patient ahead of time about what’s needed and set clear goals for your visit. And don’t forget to visit! Remember to just spend time with them and do some activities together – things that you both enjoy.
If other family members are doing most of the hands-on work, you can step in for them to give them some time off. Maybe you can plan a visit so they can go on vacation or just take a much-needed break.
From a distance, it may be hard to feel that what you’re doing is enough or important. But sometimes the distant caregiver is the one who ties things together and keeps everything organized. You may be the one called because you know what to do or where to go for help when something is needed or a problem comes up.
The American Cancer Society medical and editorial content team
Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.
National Institute on Aging. So Far Away: Twenty Questions for Long-Distance Caregivers. Accessed at www.longdistancecaregiving.com/Long_Distance_Caregiving_So_Far_Away.pdf on April 28, 2016.
Romito F, Goldzweig G, Cormio C, Hagedoorn M, Andersen BL. Informal caregiving for cancer patients. Cancer. 2013;119(Suppl 11):2160-2169.
Last Revised: June 6, 2016
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