What Is a Cancer Caregiver?
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.
Caregivers are part of the team
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:
- Giving drugs
- Managing side effects
- Reporting problems
- Trying to keep other family members and friends informed of what’s happening
- Helping to decide whether a treatment is working
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.
Caregivers are problem solvers
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:
- Help address their concerns by pointing out that the patient will need to be in the hospital for only a short time until antibiotic treatment has the infection under control
- Make sure that the patient has everything they need while in the hospital, including doctor’s prescriptions for non-cancer related medicines taken at home, such as thyroid or blood pressure medicine
- Call all the doctors involved in the patient’s care and tell them about the infection and that the patient is in the hospital
- Check that arrangements have been made for the patient to stay on the antibiotics at home or as an outpatient after leaving the hospital. If daily visits to the outpatient clinic for IV (intravenous) antibiotics are needed, the caregiver can coordinate people to help the patient get there and back each day
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.
Caregivers take care of day-to-day tasks
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:
- Shop for and prepare food
- Take medicines
- Bathe, groom, and dress
- Use the bathroom
- Clean house and do laundry
- Pay bills
- Find emotional support
- Get to and from doctor’s appointments, tests, and treatments
- Manage medical problems at home
- Coordinate cancer care
- Decide when to seek health care or see a doctor for new problems
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.
Caregivers involve the patient
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:
- Help them live as normal a life as possible. To do this you might start by helping them decide what activities are most important. They may need to put aside those that are less important in order to do the things enjoyed the most.
- Encourage them to share feelings and support their efforts to share. For instance, if they begin talking to you about their feelings about cancer, don’t change the subject. Listen and let them talk. You might want to share how you’re feeling, too.
- Let the patient know you’re available, but don’t press issues. For example, if they’re trying to do something, such as dress themselves – they might be struggling, but it’s important for them to be able to do this. You may want to do it for them, but don’t. Let them decide when they need help.
- Remember that people communicate in different ways. Try sharing by writing or by using gestures, expressions, or touch. Sometimes, it may be really hard to say what you’re feeling, but a gesture such as holding hands might show how you feel.
- Take your cues from the person with cancer. Some people are very private while others will talk more about what they’re going through. Respect the person’s need to share or his need to remain quiet.
- Be realistic and flexible about what you hope to talk about and agree on. You may need or want to talk, only to find that the patient doesn’t want to do it at that time.
- Respect the need to be alone. Sometimes, we all need time alone – even you.
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 from the ACS on their topics of Anxiety, Fear, and Depression and Distress in People With Cancer.
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.
- When you visit the patient check the house for safety issues like cluttered walkways, loose rugs, or bad lighting. Maybe grab bars in the bathroom or a shower seat would be helpful. Help make improvements or arrange for someone else to do so.
- Is the house clean? Is the yard cared for? Is there food in the house? Arranging help for chores like these can be a big help to the person with cancer.
- Get in touch with people who live near the person with cancer. This may be other family members, friends, neighbors, or the doctor. Call them. And make sure they know how to reach you.
- Plan for a crisis. Who can you count on to check on your loved one any time, day or night?
- Keep a list of all the medicines and treatments the patient is getting (include doses and schedules), and update it regularly.
- Make sure the person with cancer can reach you and others who help with care. This might mean buying a cell phone for your loved one or arranging for a long distance plan on their land line phone. You can also program important numbers into their phones. This can serve as a phone number directory and help with speed dialing.
- Use a website that lets people sign up for different jobs or tasks, such as Lotsa Helping Hands and CaringBridge. Then you can keep an eye on what’s needed and what’s being done.
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.
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.
Information provided by American Cancer Society.