What It Takes to Be a Caregiver

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What does a caregiver do?

Caregivers have many roles. The roles change as the patient’s needs change during and after cancer treatment. Caregivers serve as home health aides and companions. They may help feed, dress, and bathe the patient. Caregivers arrange schedules, manage insurance issues, and provide transportation. They are legal assistants, financial managers, and housekeepers. They often have to take over the duties of the person with cancer, and still meet the needs of other family members.

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 solve problems

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. The best way to prioritize and manage problems is to first try to understand the problem, as well as the desired result. Caregivers who are realistic, but positive; careful, but creative; and focused, but flexible are sources of strength and security for people with cancer.

For example, suppose the patient’s white blood counts drop, she develops a fever, and as a result, needs 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 she needs while in the hospital, including doctor’s prescriptions for non-cancer related medicines she may be taking 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 she 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 she leaves the hospital. If daily visits to the outpatient clinic for IV (intravenous) antibiotics are needed, the caregiver can coordinate people to help her 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 are part of the team

The caregiver is part of a health 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 health 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 will 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 health 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 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 he’s dealing with the physical, emotional, and social effects of cancer and treatment. Your job is to involve the patient as much as possible, so he knows he’s doing his part to get better and not be a burden to you. Here are some things you can try to do to keep the patient involved:

  • Help him live as normal a life as possible. To do this you might start by helping him decide what activities are most important. He may need to put aside those that are less important in order to do the things he enjoys most.
  • Encourage him to share feelings and support his efforts to share. For instance, if he begins talking to you about his feelings about cancer, don’t change the subject. Listen and let him talk. You might want to share how you are feeling, too.
  • Let him know you are available, but don’t press issues. This might involve something that he’s trying to do, such as dress himself. He may be struggling, but it’s important to him that he be able to do this. You may want to do it for him, but don’t. Let him decide when he needs 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 are feeling, but a gesture such as holding hands might tell him how you feel.
  • Take your cues from the person with cancer. Some people are very private while others will talk more about what they are 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 does not 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 are caring for is acting different – angry, quiet and withdrawn, or just sad. If you get the feeling that he isn’t talking to you because he wants to spare your feelings, make sure he knows that you are always open to listening, even about tough topics. If he keeps 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. (See our information, Anxiety, Fear, and Depression and Distress in People With Cancer on www.cancer.org, or call us for copies.)

Last Medical Review: 02/14/2012
Last Revised: 03/23/2012