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You as a Caregiver

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Your loved one is likely to experience many changes during the cancer journey. The patient will likely experience cancer-related fatigue and need assistance completing daily tasks. One or both of you may experience anxiety or depression. By anticipating your needs and the patient’s needs early in the cancer journey, you may be able to prepare more effectively to deal with them. By researching and lining up resources and solutions before you need them, you may be able to prevent some negative consequences and/or cope with changes more smoothly than you otherwise might. Outlined below are some of the needs you both may encounter during the cancer journey.

The needs of the patient

Approximately 32 percent of people with cancer experience cancer-related fatigue so severe that they cannot maintain their daily activities and routines.1Vogelzang NJ, Breitbart W, Cella D, et al. Patient, caregiver, and oncologist perceptions of cancer-related fatigue: results of a tripart assessment survey. The Fatigue Coalition. Semin Hematol. 1997 Jul;34(3 Suppl 2):4-12. The average cancer patient is likely to devote significant amounts of time to medical treatment, including about 4.5 hours per week to managing side effects.2Henry DH, Viswanathan HN, Elkin EP, Traina S, Wade S, Cella D. Symptoms and treatment burden associated with cancer treatment: results from a cross-sectional national survey in the U.S. Support Care Cancer. 2008 Jul;16(7):791-801.

With these daily challenges, your loved one may need help with day-to-day tasks such as transportation for medical treatment, bathing, eating or childcare.

Your loved one may also depend on you for help with his or her emotional needs during the cancer journey. People with cancer may experience anxiety or depression. Over the course of the cancer journey, between 12 percent and 27 percent of people with cancer experience depression, and between 19 and 27 percent of people with cancer experience anxiety. A person with head and neck cancer may have emotional needs beyond depression and anxiety. For example, some people with head and neck cancer become uncomfortable with a changed physical appearance, which can then disrupt a relationship with their partner. Helping with emotional needs on a daily basis will become an important part of your caregiver role.

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Meeting your own needs

In the same way your loved one may experience increased anxiety or depression during the cancer journey, you may also experience these emotions.

Researchers have evaluated whether caregivers also experience the emotions of people on the cancer journey. Between 25 to 40 percent of the caregivers for people with cancer experience anxiety.3, Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004 Jun 8;170(12):1795-801.4Janda M, Steginga S, Langbecker D, Dunn J, Walker D, Eakin E. Quality of life among patients with a brain tumor and their carers. J Psychosom Res. 2007 Dec;63(6):617-23. The feelings of anxiety may impact your daily life as a caregiver. For example, in a study of people with head and neck cancer, researchers reported that approximately 23 percent of their partners had agoraphobia, which is a type of anxiety disorder that can interfere with a person’s desire to be in public or leave the house.5Drabe N, Zwahlen D, Büchi S, Moergeli H, Zwahlen RA, Jenewein J. Psychiatric morbidity and quality of life in wives of men with long-term head and neck cancer. Psychooncology. 2008 Feb;17(2):199-204. Between 11 to 40 percent of caregivers experienced depression.3, Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004 Jun 8;170(12):1795-801.6Braun M, Mikulincer M, Rydall A, et al: Hidden morbidity in cancer: Spouse caregivers. J Clin Oncol. 25:4829-4834, 2007

Researchers have conducted studies that identify factors that can contribute to and worsen the level of emotional distress, depression or anxiety in caregivers, which includes lack of emotional daily support and a limited ability to participate in interests and activities.7, Nijboer C, Tempelaar R, Triemstra M, van den Bos GA, Sanderman R. The role of social and psychologic resources in caregiving of cancer patients. Cancer. 2001 Mar 1;91(5):1029-39.8Cameron JI, Franche RL, Cheung AM, Stewart DE. Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer. 2002 Jan 15;94(2):521-7. Therefore, building a caregiver network is essential not only for your loved one but also for your well-being. Reach out to friends and family to see if they can help your loved one fulfill daily needs, for example. With an adequate caregiver network, you may be able to maintain your daily activities and interests.

In the next section, Professional Caregivers, we will review strategies to maintain or improve your emotional well-being and/or your loved one’s emotional well-being.

You don’t realize until you’ve gone through it how hard it is because you know that the person who’s going through the cancer treatment has it way worse than you.Ronnie W. (wife of cancer survivor)

References

1 Vogelzang NJ, Breitbart W, Cella D, et al. Patient, caregiver, and oncologist perceptions of cancer-related fatigue: results of a tripart assessment survey. The Fatigue Coalition. Semin Hematol. 1997 Jul;34(3 Suppl 2):4-12.

2 Henry DH, Viswanathan HN, Elkin EP, Traina S, Wade S, Cella D. Symptoms and treatment burden associated with cancer treatment: results from a cross-sectional national survey in the U.S. Support Care Cancer. 2008 Jul;16(7):791-801.

3 Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004 Jun 8;170(12):1795-801.

4 Janda M, Steginga S, Langbecker D, Dunn J, Walker D, Eakin E. Quality of life among patients with a brain tumor and their carers. J Psychosom Res. 2007 Dec;63(6):617-23.

5 Drabe N, Zwahlen D, Büchi S, Moergeli H, Zwahlen RA, Jenewein J. Psychiatric morbidity and quality of life in wives of men with long-term head and neck cancer. Psychooncology. 2008 Feb;17(2):199-204.

6 Braun M, Mikulincer M, Rydall A, et al: Hidden morbidity in cancer: Spouse caregivers. J Clin Oncol. 25:4829-4834, 2007

7 Nijboer C, Tempelaar R, Triemstra M, van den Bos GA, Sanderman R. The role of social and psychologic resources in caregiving of cancer patients. Cancer. 2001 Mar 1;91(5):1029-39.

8 Cameron JI, Franche RL, Cheung AM, Stewart DE. Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer. 2002 Jan 15;94(2):521-7.