When a loved one is diagnosed with cancer, both the patient and the family go through a very difficult time. Many different emotions are experienced throughout this life period, often ending in final acceptance of the condition.
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How does it feel to be a caregiver?
The growing trend of caring for cancer patients in their own homes means that family members are drawn into helping with ordinary daily tasks, taking over responsibilities, and finally performing skilled tasks in patient care. They can be, thus, viewed as the primary caregivers. In any case, this period is marked by extreme stress and uncertainty.
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What happens to families affected by cancer?
The threats faced by such families include re-scheduling their whole lives around the patient’s treatment and recovery routines, as well as facing great physical, emotional and financial stress, accompanied by the daily threat of treatment failure and later of cancer recurrence. They may go through fear, guilt, anger, and pain while adjusting to a new conception of the patient.
The fear that another family member will have cancer is an additional stressor, especially if the cancer has a strong genetic component.
The outcome is influenced both by the:
- Support network of the caregiver
- Mental and physical condition of the caregiver
Caregivers face two categories of risks:
- Mental ill-health characterized by a sense of burden, anxiety, distress and depression
- Physical ill-health such as immune impairment, high blood pressure and heart disease, manifesting in manifold ways from pain to insomnia, and even cancer
Several factors that impact family life have been identified.
There is a great strain on family interactions because of role shifting between the patient and other family members – for instance, a child may take over the role of parenting the sick father or mother, or a husband may take over the responsibilities of the wife in the household – while the caregiver continues to play their own roles.
Furthermore, a sense of helplessness may arise with inability to manage the demands of caregiving as well as job responsibilities, and parental or spousal duties.
Children may respond to the stress by regression of their behavior, by doing badly at school, or even reacting with aggression, requiring even more effort by the caregiver.
Changing schedules and a feeling of uncertainty about the future may make planning ahead impossible, causing frustration or underachievement.
The caregiver may find it impossible to take a break even briefly to recoup, and this may result in depression.
Impaired functioning in groups outside the family environment is typical, due to frequent absences and the inability to leave the patient for long, if at all.
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Recovery and end-of-life stage
In the recovery phase there are fears of recurrence. There may also be unspoken expectations that the patient will now take back ordinary duties, while the sick person may not yet feel well enough to do so, leading to hidden antagonism.
Any chronic sequelae of the cancer treatment may impair the patient’s health and functioning; this may cause even more stress and anxiety to the family.
The end of life phase is marked by strong stress caused by a number of factors: the impending separation and fear of staying alone, the expectation of having to watch the patient suffer pain at the time of death, knowledge of total helplessness, and the death itself.
In couples, communication problems, loss of libido, and lack of outside support all increase the risk of chronic stress and maladjustment. Stress emphasizes underlying fault lines within the marriage rather than creating them.
Contrasting styles and expectations may impair communication and foster discontent and pain. For instance, spouse caregivers may not offer sex, fearing to hurt sick partners or thinking they are not interested. The patients, however, may attribute the apparent lack of sexual desire to their own unattractiveness.
The unwilling caregiver
Sometimes the caregiver is forced into the role unwillingly. In such instances it is pivotal to think about one’s limits and communicate them clearly early in the process. If necessary, the social worker responsible for the patient may be brought into the discussion, especially if the family resistance is too great to overcome alone.
Some positive outcomes are also noted, such as:
- Personal satisfaction in being able to help the loved one who is sick, with affection and respect
- A sense of being needed and of finding a greater life purpose
- Growing confidence and a sense of accomplishment in being able to look after the patient well
- Experience of new groups in the lives of the family, as they come into close and prolonged contact with medical personnel, social workers, or other patients and their families
What help do caregivers need?
Support for caregivers should include:
- A formal assessment of the caregivers’ needs.
- Psychoeducational interventions to help them deal with the low-level medical and other needs of the patient without anxiety:
- Offer sources of reliable and practical information on the condition, making sure it is up-to-date
- Make caregivers part of the patient’s health team
- Making available appropriate information about the patient’s specific condition, including medications, alternative treatments and side effects, in an understandable manner
- Physical support:
- Help them explore new ways to manage the financial burden and handle legal issues
- Offering links to spiritual advisers (if applicable), support systems and respite care providers
- Encourage them to ask for help, and to take time off to enjoy life
- Facilitate open discussions between the patient, other family members and the caregiver about the extent of involvement by each member, the treatment preferences of the patient, and how to handle the extra workload. Also, help them to gain confidence and trust that the healthcare professionals feel for the patient and are honest, or to get a referral if they are not satisfied with the medical team.
- Emotional support (such as telephone counseling of both patient and caregiver separately over a specified period) which can significantly reduce anxiety and depression by:
- Helping them understand the vital role they are playing in the patient’s well-being
- Recognizing and fostering their satisfaction in caring with competence and warmth for a sick loved one
- Reassurance that the patient is receiving good care at their hands
- Support from mental health professionals
- Family or couples therapy