Posted on September 14, 2022 in Cancer
Written by Dr. Sharp
A cancer diagnosis does not just affect the patient. Spouses, children, parents, siblings, friends, and other loved ones may all be called upon to help.
A cancer caregiver is someone who helps a person with cancer in an unpaid role.
Caregiver roles are complex and constantly changing. Being a caregiver is also a role for which many people feel unprepared. Educating yourself about cancer caregiving can help you provide the best support for your loved one as he or she navigates life with cancer.
A cancer caregiver is someone who provides support to another person living with cancer. In the United States, an estimated 2.8 million to 6.1 million adults care for patients with cancer.
Importantly, caregiving is an unpaid role. Typically, someone offers caregiving out of love for the person with cancer.
Patients often benefit from having a close loved one help instead of or in addition to a paid care provider. The person with cancer may feel more comfortable sharing vulnerable emotions and personal experiences with someone they know and trust.
Caregivers often take comfort from the role, as they can tangibly display their love and compassion for the person living with cancer.
Caregiving is time-consuming, with the average caregiver providing 32.9 hours of care each week. Because many caregivers are working adults, they may need to change their work schedules to accommodate the care activities.
Anyone can serve as a cancer caregiver.
Because caregiving is an unpaid role, it depends on who is willing and able to provide care to someone with cancer.
This role is often filled by a spouse or partner, sibling, parent, or child. In some cases, when a person does not have a family member able to serve as a caregiver, a friend or other loved one may provide cancer care.
It is also important to note that some people may have multiple people serving a caregiving role. For individuals with a strong social support system, several loved ones may chip in to provide support. Often, it is helpful for each person to have a defined role (e.g., physical caregiving, coordinating appointments, or preparing meals) to ensure good communication.
Loved ones who live farther away can also be helpful long-distance caregivers by offering emotional support or coordinating on-site services.
Caregiving makes an enormous impact on a person’s experience of living with cancer. Caregivers can have a powerful positive impact on a patient’s quality of life. Consider the following qualities of a good cancer caregiver:
A good cancer caregiver knows how to solve problems. This is perhaps the most important skill of being a caregiver, as it will come up on a nearly daily basis.
Perhaps the patient gets acutely sick and needs to be hospitalized for a few nights. A caregiver might need to talk through treatment options with the patient and medical team, figure out who can care for the person’s pets during the hospital stay, and understand any medication changes that are made.
Communication is key for caregivers. There are a lot of people involved in a patient’s care, including doctors, nurses, physical therapists, occupational therapists, speech therapists, counselors, social workers, and friends and family members. Developing good communication skills prevents errors from being made. It’s also key in ensuring that the patient’s wishes are heard and advocated for.
Caregiving requires strong organizational abilities. A caregiver may need to coordinate many aspects of a person’s life to allow him or her to focus on fighting cancer. Making lists, keeping a calendar with important appointments, and delegating tasks to others are helpful strategies to stay organized.
Often, a person with cancer feels physically sick and emotionally overwhelmed. This can make it hard to make decisions.
Unfortunately, there are dozens of decisions that come up when someone is fighting cancer. You may need to help the patient decide whether to pursue a particular treatment, advocate for another scan, or seek a second opinion.
Knowing how to help someone walk through the pros and cons is helpful. You may also need to be prepared to make difficult decisions at an end-of-life situation or if the patient becomes unable to express his or her wishes.
Cancer is unpredictable. As much as a good routine helps a patient stay on track, it’s important to be flexible. Caregivers are good at preparing for setbacks, new symptoms, and changes in treatment plans. Having an upbeat, flexible approach makes these things easier for the patient to navigate.
Someone dealing with cancer needs to know who they can rely on for help. Being dependable and trustworthy ensures that the patient knows you will show up when needed.
A good caregiver knows everything that is going on with a patient medically, emotionally, and logistically. This allows the caregiver to help the patient focus on his or her well-being.
A caregiver’s major responsibilities can be divided into the following categories:
Again, one person may not do each of these tasks. Assembling a team of people who can help can make a big difference and prevent caregiver burnout. Following are examples of things that cancer caregivers often do for their loved one.
Help the person with cancer live as normal a life as possible: A cancer diagnosis is life-altering, and the treatment journey is challenging. Try to find ways to keep life as normal as possible. Small pleasures like spending time with family, listening to music, or getting outdoors can make a big difference in quality of life.
Help the person share feelings: Dealing with cancer causes sadness, anger, depression, and desperation. Encouraging the person with cancer to find an emotional outlet can be healing. Identify when the person needs more support: As a caregiver, you have the best sense of how a patient is genuinely doing. Part of your role may be to identify when the person needs more help. This might be finding professional support like a psychologist or psychiatrist.
Help make treatment decisions: Making informed treatment decisions is mentally taxing. Since you may be present at appointments, you can help your loved one reason through the pros and cons of each option.
Coordinate medical care: Cancer treatment often requires frequent medical visits to oncologists, radiation oncologists, chemotherapy appointments, and other medical providers. As a caregiver, you can help to keep track of these appointments. You may also be the person who helps to communicate symptoms or treatment side effects to different providers.
Administer medications: Understanding a patient’s medication regimen is an important part of caregiving. This includes knowing dosages, the timing of medications, and the types of different medications a person is on. Helping your loved one come up with a good system for taking medications at the right time makes things easier for everyone.
Manage treatment side effects: Cancer treatments may cause nausea, vomiting, loss of appetite, changes in taste, fatigue, pain, sleep problems, diarrhea, and memory problems. Providing emotional support can help the person learn to cope with these symptoms.
Pay bills: Cancer treatment often comes with a mountain of medical bills. Staying on top of bills will prevent fees or penalties for late payment. It may be helpful to be appointed the person’s power of attorney so you are able to make payments on their behalf.
Understand insurance coverage: Understanding your loved one’s cancer insurance coverage is critical when helping him or her navigate the medical system. Make sure you understand the person’s deductible, copayments, coinsurance, and general coverage. This can help to prevent surprises when receiving bills later on.
Offer direct financial support, if appropriate: Depending on your relationship to the care recipient and your own financial situation, you may be able to provide financial support for expenses.
Coordinate child care, pet care, and household chores: Dealing with cancer leaves little bandwidth for other aspects of daily life. As a caregiver, you can make this easier by coordinating a person’s regular household needs.
Help find a lawyer: A lawyer can help to advise your loved one about creating a will, estate planning, and making guardianship decisions.
Appoint a health care proxy: A health care proxy or power of attorney makes medical decisions if the person is no longer able to do so.
Assist the person with an advanced directive: An advanced directive, or “living will,” is a document that specifies a person’s health choices.
Being a caregiver for someone with cancer is an act of love that often brings joy and comfort to the patient and the person providing care.
However, caregiving can also be a major challenge and responsibility. It is normal to occasionally feel stressed, emotional, and overwhelmed by the reality of caregiving.
Caregiver burnout is a serious state in which a caregiver becomes physically, mentally, and emotionally exhausted. This can have a serious impact on your health, including risk for stress, cardiovascular disease, chronic pain, depression, anxiety, and other chronic conditions.
You may have heard the familiar adage that caregivers need to put their own oxygen masks on before helping others.
That means staying vigilant about signs of caregiver burnout, including:
Caregiver burnout, also called compassion fatigue, is a condition characterized by extreme physical, mental, and emotional exhaustion. Burnout happens when the cancer caregiver feels overwhelmed by their role. This can affect the caregiver’s ability to provide support.
Caregiver burnout can be prevented. The important thing is to remember to set clear boundaries about what you can and cannot do. You simply cannot be the sole person providing all of your loved one’s care.
Building a support network of other family members, friends, or paid care providers will help to take the burden off you. Accepting help is hard at first, but it makes a big difference in your quality of life. Plus, it helps your loved one with cancer stay engaged with friends and family.
Remember that there are people to turn to when you need help. Talk to trusted loved ones about your mental and emotional burden.
It can also be helpful to find a cancer caregiver support group. Support groups are a great way to connect with others who understand what you are going through.
You may also wish to find a psychiatrist or psychologist who can help you navigate your own distress surrounding your loved one’s cancer diagnosis.
Cancer caregivers often say that it is one of the most rewarding yet challenging roles of their lives. It can be incredibly moving to help a loved on in their time of need. Understanding the caregiver role can help you prepare for what is ahead. When things get tough — and they will — remember that you’re not on this journey alone. We’ve compiled a list of great patient resources to help those living with cancer and their caregivers.
