Together We Can -- Newsletter of the Joan Karnell Cancer Center
 

Spring 2004

Caregivers: Giving and Getting the Care You Need
One Day at at Time
Neutropenia and Diet
Favorite Recipes
 
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Caregivers: Giving & Getting the Care You Need

In the face of cancer, the roles and needs of caregivers should not be overlooked. Caregiving is one of life's most difficult jobs.

“It's hard to be a caregiver sometimes,” says Helen Grosky, social worker at the Joan Karnell Cancer Center at Pennsylvania Hospital. “As a patient, you know how you feel. A caregiver doesn't know how the patient feels but often believes he or she is responsible for trying to make that person feel better. It's a very hard place to be.”

And it's a role that is often thrust upon a person without warning. “A cancer diagnosis impacts the entire family,” says Kia Witherspoon, palliative care nurse practicioner at the Joan Karnell Cancer Center. “It's important that all family members, not just the patient, be heard.” Caregivers often have to balance work and their own family demands with that of the patient – and many do it without help.

In a study completed by Frances Barg, PhD, assistant professor of family practice and community medicine at the University of Pennsylvania School of Medicine, she found that many caregivers try to manage without the help of family members. “It's a job that you can't do by yourself. Caregivers need to understand that it is very important to enlist the help of other family members and community resources. There are different challenges at different phases of cancer and you need help to both care for the patient and care for yourself,” says Barg.

In fact, Barg and her colleagues found that 70 percent of the caregivers they interviewed would like more help from family members and friends. More than 45 percent of caregivers said they were experiencing financial problems and 35 percent reported that they were overwhelmed by their role as caregiver.

“A feeling of being overwhelmed or frustrated is very common,” says Grosky. “Remember, you have taken a role that you may really know nothing about. You have to learn how to care for someone with cancer. This is probably new to you and to feel overwhelmed is a very natural response.”

According to Barg, the stress of caregiving can also lead to low self-esteem and feelings of isolation and have a negative impact on your health. As a caregiver, you have four basic needs that should be addressed:

  • Emotional - learning to work through your own emotions (guilt, fear, frustration).
  • Physical - learning how to care for another person as well as caring for your own health.
  • Education/Resources - getting the help you need from family, friends and the community.
  • Spiritual - finding strength and comfort in that which touches your spirit.

Remember, too, that you are not alone. “You should make an effort to get out and meet other caregivers,” suggests Barg. “Other caregivers can help you identify successful ways to care for a person at different stages of cancer and to deal with your own feelings. You aren't alone. Other people have been caregivers and have been very successful at it.”

“You are the eyes and ears of the home,” continues Witherspoon,“and that can be difficult. You're often called upon to communicate with doctors and nurses and to assess how your family member is doing. There are many things you can do to contribute to the patient's well-being and to help you not feel so helpless. The first step is recognizing how hard a job you have and asking for, and getting, the help you need.”

The Joan Karnell Cancer Center offers “Strength for Caring,” a one-day seminar of education and psychosocial support for caregivers of people with cancer. The program focuses on the needs of the caregiver, including education about cancer and its treatment, talking with the doctor, time management skills and community resources.

Strategies for Caregivers

Focus on Concrete Issues

You can't solve all the issues that you may be facing at once. Start with the simpler ones. Are there transportation problems? Financial issues? Take one of these things at a time and find a solution or consider talking to a social worker that can help solve these issues for you.

Accept Help From Others

Help may come from places you least expect. If family members are unwilling to help, look to other sources. If a friend offers assistance, say yes. Give everyone a job to do. Even the smallest of acts (i.e.making dinner, babysitting your children, driving your loved one to an appointment, etc.) will go a long way to help alleviate your stress.

Be Informed

Ask the doctors and nurses any questions you may have. Write the questions down at home as they occur to you and bring them with you to your loved one's appointments. Don't be afraid to ask what else you can do to contribute to your loved one's well-being. The more you know, the better you can communicate with the medical staff and alleviate any feelings of helplessness.

Keep Talking

Take the time (and accept help from others, if necessary, to get the time) to talk to other caregivers. Learn how they are coping with the emotional issues surrounding caregiving. How did they handle the situation when the patient was diagnosed? During treatment? Discuss your frustrations and learn how others overcame similar situations.

 


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