What are caregivers and caregiving for cancer?
Statistics: According to the Family Caregiver Alliance, there are an estimated 44 million people in the United States who are engaged in caregiving for a family member. Three out of five informal caregivers are women. A majority of caregivers are middle-aged, and a quarter of all caregivers provide care for someone over the age of fifty. Half of all caregivers are employed full or part time and provide fewer than eight hours of care per week. The average caregiver spends four to five years in this role.
Many informal caregivers provide care for a loved one living in close proximity; however, a number of caregivers fall into the long distance category, spending on average $392 a month on travel and out-of-pocket expenses as part of their caregiving duties.
The role of the caregiver: There is no “typical” caregiver in terms of the support the person provides to an ill person. Some caregivers help with grocery shopping and laundry, others take a loved one to doctor visits and help change bandages, while still others provide long-distance support to someone by checking in with the individual on a regular basis and lending an ear.
According to the American Cancer Society, for caregivers to give appropriate care, they need to take time to listen to the person requiring caregiving and ask what types of help that person may need on an ongoing basis. Open communication is vital. A caregiver may think the patient needs help with something that the person feels capable of handling. To keep conflict and frustration to a minimum, the caregiver and cancer patient must be willing to listen to each other’s needs and concerns. Both parties need to keep focused on their goal: to provide the most appropriate care and make sure all needs are met.
In addition to the important role a caregiver plays in the life of the patient, the caregiver is also a vital part of the health care team. Caregivers can provide important information on the patient’s health by observing health signs and symptoms while they help the patient. Typically, caregivers look for changes in mental and emotional function and any noticeable changes in the patient’s condition. Caregivers should ask the medical providers how to keep records and how to perform any tasks (such as bandage changing) that they are being asked to do. The American Red Cross offers caregiving courses online and in person that may help caregivers feel more competent in their new role.
Caregivers need to take time to think about what tasks must be done and determine what they realistically can and want to provide for the ill person. They must determine what they will do themselves and what they will delegate to other family members or a hired professional, according to the National Cancer Institute. No single person can do everything, and a caregiver’s hardest decision may be determining what tasks must be delegated to others. There is no reason that caregivers should feel guilty about not being able to do everything alone. When caregivers ask friends or relatives to help they should not be offended if they are refused, as people may have other demands on their time and other priorities. However, when people offer to help, caregivers should take them up on their offers.
Those providing long-distance support need to determine in what ways the cancer patient needs help and then find professional or informal caregivers to help with those needs. To find contact information for local agencies that can provide services, long-distance caregivers can consult a local telephone book or do an Internet search. The type of professional caregiver hired will vary depending on a patient’s needs. It is also helpful for a long-distance caregiver to make a list of the ill person’s local friends and contact them to see if they would be willing to check in on the individual on occasion and help with tasks that must be done in person. It may also be wise to set aside money on a regular basis to pay for those times when the caregiver may unexpectedly need to travel to the patient’s side.
Professional caregivers can perform a number of tasks and go by different names, according to the National Association for Homecare. For example, a home health aide can administer medical treatments, while a companion will sit with the ill person and may help with light housekeeping but is not trained to perform medical duties. Regardless of the services the professional caregiver is providing, the main caregiver needs to ask questions to determine whom to hire. The content of these questions concerns how long the caregiver has been working in the field, what kind of training he or she received, and the professional’s fee and work availability. In addition, the employer should check the caregiver’s references. Payment for professional caregiving services is typically through a combination of self-pay and public and private entities.
Care for caregivers: Some challenges caregivers typically talk about include having less time for their personal lives and the difficulty of trying to balance their current responsibilities with their caregiving role. Other concerns include financial strains and feeling physically, emotionally, and mentally distressed.
It is important for caregivers to take time to take care of themselves. Many caregivers become so focused on helping someone else that they forget to make themselves a priority. Caregivers can temporarily put aside their needs to help someone else, but putting aside these needs for long periods of time is not wise and can be detrimental to their physical and emotional health.
Studies show that informal caregivers are at a higher risk for physical, mental, and emotional illness. They have increased risk for cardiovascular disease, can have impaired immune systems, and may have increased blood pressure and insulin levels. In addition, caregivers are prone to depression, anxiety disorders, and feelings of guilt. Emotionally, caregivers can feel a sense of anger at themselves and the patient, be prone to irritability that leads to moodiness, and be unable to concentrate.
To combat the potentially harmful effects of caregiving, it is important for caregivers to make time for themselves and maintain a routine that will be beneficial to their own health. For example, they should make time to exercise, eat well, and get enough sleep as well as to connect with friends and families, pursue their own interests, and do nice things for themselves.
Caregivers should also find ways to deal with their emotions regarding their role. Many caregivers will face emotions that range from anger, grief, and guilt to anxiety, depression, and loneliness. These feelings are all normal, and having other caregivers with whom to share their experiences or just being able to vent their emotions is important.
Caregiver support groups: Many caregivers find it easier to cope with their role by reaching out to others who share their experiences. From in-person support groups held at local community centers and hospitals to online chat rooms, there are a number of ways a caregiver can connect with other caregivers. Caregivers should try out various types of support groups to find the best option. There are also a number of books about caregiving that include stories by other caregivers. There is no reason caregivers should have to cope alone, as there are many opportunities for caregivers to connect with each other.
Barry, Michael S. The Art of Caregiving: How to Lend Support and Encouragement to Those with Cancer. Colorado Springs, Colo.: Life Journey, 2007.
Capossela, Cappy, and Sheila Warnock. Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill. Rev. ed. New York: Simon and Schuster, 2004.
Gilbar, Ora, and Hasida Ben-Zur. Cancer and the Family Caregiver: Distress and Coping. Springfield, Ill.: Charles C Thomas, 2002.
Hennessey, Maya. If Only I’d Had This Caregiving Book. Bloomington, Ind.: AuthorHouse, 2006.
Houts, Peter S., and Julia A. Bucher, eds. Caregiving: A Step by Step Resource for Caring for the Person with Cancer at Home. Rev. ed. Atlanta: American Cancer Society, 2003.
Intner, Riki, and Roberta Cole. Caregiving from the Heart: Tales of Inspiration. San Francisco: Elders Academy Press, 2006.
Kane, Jeff. How to Heal: A Guide for Caregivers. New York: Allworth Press, 2003.
Mintz, Suzanne Gebben. Love, Honor, and Value: A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving. Sterling, Va.: Capital Books, 2002.
Perry, Angela, ed. The American Medical Association Guide to Home Caregiving. New York: J. Wiley & Sons, 2001.
Rose, Susannah, and Richard Hara. One Hundred Questions and Answers About Caregiving for Family or Friends with Cancer. Sudbury, Mass.: Jones & Bartlett, 2004.