Caregiver Support and Education
Caregiver support and education at a glance
- A caregiver is a person who helps someone with cancer but is not paid for the services provided.
- It is estimated that in the United States more than 65 million people spend around 20 hours each week in a caregiver role.
- Caregivers can be family members or close friends and are often not trained for the job.
- Caregiver duties can include providing transportation, helping understand the diagnosis and treatment options, coordinating medical care along with many other duties.
- It is important that caregivers also think of themselves and take needed time to stay physically and mentally healthy.
What is a caregiver?
A caregiver is anyone who is affected by a person diagnosed with an illness and provides support to the sick individual. This can extend to partners, children, siblings and friends. Most often, the caregiver is not medically trained.
For patients of CU Gynecologic Oncology, a caregiver refers to anyone who is affected by and helps someone diagnosed with gynecologic cancer. Excepting those requiring surgical intervention, most people who are diagnosed with cancer are treated in an outpatient setting and do not need to stay in the hospital. While commuting back and forth for treatment they often need help, support and encouragement.
The Caregiver Action Network estimates that more than 65 million people in the United States spend about 20 hours each week caring for an ill, aged or disabled friend or family member.
The main role of a caregiver is to provide support and encouragement to a loved one as he or she learns about the cancer diagnosis and makes treatment decisions. For each caregiver the experience and services provided could be different. Some of the common duties a caregiver will provide are:
- Providing emotional support
- Assisting the patient with medical appointments
- Helping with decision-making
- Coordinating medical care
- Providing transportation
- Helping manage finances.
Caregivers should not try to do everything by themselves, which is a common mistake. A woman with gynecologic cancer can and should have multiple caregivers to help with the duties.
A caregiver should set realistic limits and realize where their help is needed most. Ideally, caregiving should be a team effort, with help from friends, family members and professionals. Caregivers should talk with the care team about what they are currently doing and areas where they need help from other team members.
Involving others in the care can take some of the pressure off caregivers, giving them time to take care of themselves, which can prevent burnout. Often friends and family want to help but may not know how or what to help with.
What does it feel like to be a caregiver?
When a loved one is diagnosed with cancer it can be hard to know what to say or do.
Sometimes the best thing a person can offer someone with cancer is to sit quietly and spend time together.
Learning a loved one has cancer can be accompanied by feelings of shock and sadness. But many people find personal satisfaction in caring for that person. A caregiver can see this meaningful role as a way to show love and support.
A caregiver can feel a sense of satisfaction, accomplishment and confidence after caring for someone. During this time the caregiver can learn about abilities and strengths they were not aware they had, ultimately giving them a larger sense of purpose in their life.
Caregiving can also be stressful, painful and frustrating. This is why it is important for caregivers to get help and to work through any emotions you are feeling.
There is a growing realization that caregivers need support themselves, to find a community or an emotional support system. Many caregivers meet regularly with social workers or join a caregiver support group to make sure that they have time to talk about their worries and fears. Support groups are also a good place to get advice and information about cancer and caregiving.
A caregiver should not feel guilty or selfish taking time to themselves. It is important to make sure the caregiver is staying healthy both physically and mentally. People may be caregivers for someone with cancer, but they have their own needs and that should not be put aside.
Understanding the cancer experience as a caregiver
One of the first things a caregiver should do after learning a loved one has cancer is to understand the diagnosis. This can help with understanding the course of the disease, possible treatment options that lie ahead and how these will affect the patient.
Treatment of cancer varies depending on the type and stage of cancer. The most common treatments are chemotherapy, radiation and/or surgery. The caregiver needs to know the treatment plan and the expected side effects.
They should also know about any medication the cancer patient will need to take. This includes the name of the drug, what it is for, why the loved one is taking it and how it should be taken.
Patients may also decline cancer treatment. While this can be very hard for friends and family who may not agree with the decision, caregivers should learn why the patient chose to decline treatment and continue to offer support during this difficult time. There are still supportive care options for those who do not want treatment for their cancer. For example, palliative care can provide help with nausea, severe pain or other symptoms, whether or not the patient is also getting surgery, chemotherapy or radiation for her cancer.
How to be a supportive caregiver during appointments
It is common for caregivers to feel that they need to take charge at the oncologist’s office. But the patient is the one who is actually in charge. It can be helpful for caregivers to talk with their loved one before appointments to see if the patient would like to take lead with talking to their healthcare team.
Prior to an appointment is can also be beneficial to create a list of questions the patient would like to ask the doctors. Having questions written down helps the caregiver and patient remember to ask them during the appointment. During the appointment it can be helpful for a caregiver to take notes and collect paperwork from the medical team.