The Caregiver's Point of View
Caregivers worry about how they'll be able to do all this and also take care of themselves. The caregiver sometimes has to give up social activities and miss work. This can all be very hard and very tiring in a physical and emotional way for both the caregiver and the patient. These demands can be especially hard on older caregivers.
After Treatment Ends
Some patients and caregivers expect life to go back to the way it was before the cancer was diagnosed and this may not happen. Caregiver stress may continue after the patient's treatment ends, as roles change once again. Some caregivers have problems adjusting for the first year after the end of treatment. Part of this is caused by worry that the cancer will come back. When the caregiver is the partner or spouse of the cancer survivor, there may be sexual problems, also. Studies have shown that these adjustment problems usually do not last long. Problems with adjusting that can last a long time include the following:
- Problems in the relationship between the caregiver and the patient.
- Poor communication between the caregiver and the patient.
- Lack of social support.
At the End of Life
Caring for a patient at home at the end of life brings a new set of challenges for the caregiver. The patient depends even more on the caregiver for physical and emotional support. The patient's symptoms also may be more difficult to manage. The caregiver may feel distressed by these new challenges and by not being able to take part in activities and interests that are important to him or her. The caregiver may feel even more distressed if the patient goes into hospice care. Studies have shown that caregivers have a lower quality of life and poorer health when giving the patient end-of-life care than they do during active treatment.
Some hospital or hospice programs offer end-of-life support services to improve the patient's quality of life and help both the caregiver and the patient. End-of-life support services include the following:
- A team approach helping the patient and family with their physical, emotional, social, spiritual, and economic needs in order to improve the quality of life of the patient and caregiver.
- Including the caregiver in medical decisions and managing the patient's symptoms.
- Watching the caregiver for signs of distress and work with him or her to get the kind of help they need.
See the PDQ summary on Last Days of Life for more information about end-of-life care.