Caregivers

Family caregiving or informal caregiving by relatives and friends represents the key factor of hospice home care. Caregivers are involved in helping the hospice patient manage to carry out the tasks of daily living. This can be a turbulent, confusing and yet vital time because of the changes that take place physically, emotionally and spiritually. Caregiving is best accomplished when attention can be given to creating shared caregiving with those who can care for the person as well as each other. Appointing a primary caregiver who can coordinate the activities and communications is helpful. The hospice team is available to assist you in dealing with the demands of caregiving and offers some suggestions.

1. Develop support systems for caregiving. Accept help from other family members, friends, church and community.
   
2. As much as possible maintain a routine where there is a certain predictability to each day. Life then retains some familiar and reassuring qualities for both patient and caregiver.
   
3. Preserve your strength and pace yourself. Eat nutritious food, get adequate rest/sleep; exercise and some form of breaks are essential.
   
4. Recognize that caregiving is an emotionally charged activity. There can be satisfaction in doing something significant for this person, often making possible the fulfillment of the wish to die at home. Through this process new depths of love, understanding and appreciation between caregiver’s and loved ones can evolve.
   
5. Recognize that caregiver’s often experience feelings of guilt, anger, fear, loneliness and depression and a sense that one’s life has been dislocated. Expecting that these are common feelings can help in dealing with them, but it is also important to seek social support in dealing with them. Talk with a sympathetic and concerned listener about your feelings. Your hospice nurse, social worker and/or chaplain are available to help you think through caregiving issues.

Links for Caregivers

National Family Caregiver’s Association: offers tips on caregiving (has an e-community in VA)

AARP American Association of Retired Persons: (excellent “tool kit” for caregivers)

A joint venture of the National Family Caregiver’s Association and the National Alliance for Caregiving: (excellent resource and community for caregivers)

Caring Connections (caregiving and end of life issues)