The responsibilities of care giving may seem complex and overwhelming at first. Depending on the person’s needs, a caregiver may provide physical care; help with medical care, financial issues, or insurance issues; and serve as the liaison between the patient and the health-care team.
Here are some tips for GIST Caregivers:
Develop a needs list. Caregiving, like any responsibility, is made up of individual tasks, with some more important than others. Compile a list of caregiving needs and use this list to decide how to divide the tasks between friends, family, and health-care professionals.
Think of it as teamwork. The caregiver is working on a team, with the person with cancer in the central role. Other members of the team include family members, friends, and the medical team. Each member brings different skills and strengths to the group, and all work toward a common goal. If you are the team leader, help each team member to express concerns, opinions, and emotions.
Be proactive. Being proactive means looking ahead and planning as much as possible in order to prevent crises. Making schedules that identify which relative or friend is available for phone calls, transportation, or errands may simplify offers from relatives, friends, or neighbors and give all involved some time to be away without guilt or concern.
Be a problem solver. Caregiving involves looking for creative options that work. To be a good problem solver, be quick to identify problems, find out what needs to be done, commit to the task, and don’t be afraid to seek the help of others.
Have a positive attitude. This decision will set the stage for everything else you do. Use members of the team, friends, religious or spiritual advisors, and health-care professionals to help you cope with difficult situations.
Know yourself. Recognize your own strengths and limitations as a caregiver. This allows you to set boundaries and gives you the confidence to know when to ask for help. Compassionate caregivers need to recognize when they need to take time for themselves and “recharge” their batteries.
Gather information about professional services. These services include professional home care, home-delivered meals, and help with everyday activities. Some community agencies have volunteers who can help with transportation or advocate for health insurance or other benefits. A local hospital or community social worker is a great source for referrals to such programs.
Caregiver Tips for Emotional well-being
Communicate. The caregiver’s most important and challenging job is to communicate openly with the person who is ill. Assure him or her that he or she will retain decision-making power and be a central part of all discussions and decisions.
Accept the limitations of the person who is seriously ill. The person who is ill may no longer be able to taste a meal or appreciate the effort that goes into its preparation. Realize that the acts of caregiving may need to shift as the patient becomes more disabled.
Include the patient in activities that provide meaning or pleasure. Even if the person who is ill is no longer able to participate in sports or social gatherings in an active way, he or she may enjoy watching or hearing a report. It is important to preserve the connections as long as possible.
Caregiver Tips for Medical and physical care
Gather information about the diagnosis, treatment, and prognosis. As a caregiver, learn more about cancer, including the patient’s cancer type, at www.cancer.net. Ask the doctor about other reliable resources. Many patient advocacy groups are also good sources of information.
Be an advocate. Take an active role in the patient’s medical care. If possible, accompany him or her to all medical appointments. It may be helpful to write down questions for the doctor in advance. In addition, you may need to tell the doctor about any symptoms or other health information that helps the doctor make informed decisions. Learn more about Communicating With Your Doctor.
Learn how to provide proper physical care. If a person requires physical care, such as bathing, dressing, feeding, using the toilet, and grooming, consider consulting a health-care professional or health-care videos, manuals, or books to learn the necessary skills to perform these tasks.
Legal and financial issues
Ask about being assigned an insurance case manager. Many insurance companies will assign a representative to help manage insurance concerns for a person with a serious illness. This representative can be a resource for determining which benefits are covered, deciding whether arrangements can be made to access out-of-plan benefits for medically necessary care, finding available home care, or troubleshooting when insurance problems arise.
Determine financial status. Providing care for a person who is seriously ill can be financially challenging. For services that cannot be provided by family members (such as medical, pharmaceutical, or therapeutic services), decisions will have to be made regarding who will perform these services and what funds will be available to pay for these services. Knowing the financial status can help determine future health-care choices.
Use legal tools and have legal documents in place. Legal documents called advance directives are an effective, legally binding way to communicate a patient’s wishes. More importantly, a health-care proxy can be designated to speak for the patient at such a time when he or she is unable to do so. Deciding who ought to be the health-care proxy is an important decision and needs to be made early on and communicated to the professionals involved in care. Other documents, such as a durable power of attorney for health care may also be needed.
Do you have any tips for GIST Caregivers? If so, share them in the comments section below.