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Caregiving: to the Patient – to the Caregiver

YogaBy Anne Coscarelli, Ph.D. (Simms/Mann Center Director)

“When my wife was diagnosed with cancer I was shocked and frightened. Not only did I fear losing the one person that I felt that I loved and needed most in the world, but I wondered about my ability to care for her. I wondered, was I up to the task?”

A cancer diagnosis brings a myriad of emotions and feelings for patients, partners and family members. Cancer affects the entire family as roles and expectations change. The more disabled the patient becomes, the more disrupted routine life is and the need to provide personal care increases. Most patients experience some change in their ability to function independently whether this is transient (i.e., during a period of treatment such as surgery, chemotherapy or radiation) or more permanently from consequences of the treatment and/or progression of the disease. Those who are closest to the patient often must step into a role as caregiver, which can require a considerable amount of time, fortitude, energy and emotional strength. Caregiving is a challenging task for most and can be extremely stressful for many.

Caregiving is a word that is innately understood, yet does not exist in most dictionaries. Its definition evolves out of the responsibilities that become assigned to it. In a study conducted by the National Family Caregivers Association (NFCA) the types of tasks that the caregivers reported as doing serve to define this role:

  • Housework, meals, laundry and groceries 69%
  • Activities of daily living including feeding and dressing 61%
  • Emotional support and companionship 54%
  • Guardianship, legal responsibilities, financial management 35%
  • Transportation 23%
  • Healthcare tasks such as bandaging, giving medications, etc. 21%

These activities are often done in addition to jobs outside the home and child-rearing responsibilities. A common set of emotions also defines these roles and establishes a bond among caregivers. In an article entitled The Common Bonds of Caregiving these feelings are noted as follows:

  • Sadness that comes from wanting the miracle of normalcy
  • Upheaval of changing family dynamics that occurs because life has been turned upside down
  • Grief which caregivers and care receivers all experience in their own personal and private way
  • Stress from feeling that they don’t have enough leisure or personal time
  • Frustration because it is so difficult to get things done
  • Isolation that comes from living outside the norm

The emotional wellbeing of the caregiver is a concern that emerges. Caregiving often leads to decreases in sleep and in pleasurable social activities that then lead to isolation, fatigue and depression. Multiple studies have shown a relationship between caregiving and clinical depression. In the NFCA profile, 61% indicated that they had more depression, 51% reported sleeplessness, 41% reported back pain, 24% had stomach disorders and 27% had headaches. In a recent study presented at the American Society of Clinical Oncology, researchers found that there was a higher rate of divorce in couples in which the woman was the patient. All of these studies suggest that caregiving takes its toll and emphasizes the need for intervention.

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