Role of Hospice Patient's Primary Caregiver

The primary caregiver of a hospice patient may be a family member, friend, or hired caregiver. Several people may work together to provide care for the patient, although one person needs to be designated as the "primary" person. The primary caregiver is responsible for overseeing the care of the patient in the home, particularly when the patient is no longer able to care for himself/herself.

Although the hospice team provides guidance and support, it does not provide prolonged periods of continuous care, and it is not intended to take the place of the family and/or primary caregiver. Thus when the patient's needs are increasing, it is important that enough care be provided by non-hospice caregivers to ensure that the patient is kept comfortable and safe. Lumina Hospice & Palliative Care offers education and support groups for family caregivers.

The role of the primary caregiver is to:

  • Be responsible for the care of the patient in the home. This means to provide or ensure continuous care of the patient when they no longer should be left alone. If the primary caregiver is unable to fulfill this role, the patient's family and/or caregiver can work with Lumina Hospice & Palliative Care  to develop a plan that will ensure optimal care for the patient.
  • Communicate with the hospice staff regarding the status of the patient or changes in the patient's condition

The role of Lumina Hospice & Palliative Care in relation to the primary caregiver is to provide:

  • Instruction related to patient care when appropriate.
  • Emotional and spiritual support to help caregivers cope with the life-threatening illness. Hospice staff will also provide bereavement support.
  • Intermittent assistance with caregiving (e.g., hospice aides, respite care volunteers).
  • 24 hour/day, 7 day/week on-call nursing coverage for emergencies, support and symptom management.

Other ways Lumina Hospice & Palliative Care Supports the Hospice Patient's Caregivers

The entire hospice team is a support resource for you as a caregiver. Here are some of the things we can do to support you in your role as caregiver:

  • Inform you about all the services we offer and help you decide which ones best meet your needs.
  • Teach techniques that may make your job easier, for example, how to move someone in and out of bed without straining your back.
  • Provide equipment that may ease some burdens: walkers, wheelchairs, hospital beds, bedside commodes.
  • Deliver supplies that will keep your loved one more comfortable.
  • Give instruction on how to administer medications, change dressings, and position your loved one to reduce the risk of bedsores.
  • Offer a hospice aide to assist occasionally with personal care and light housekeeping needs.
  • Send in a trained respite care volunteer to give you time to get out of the house, run some errands, meet friends, or pursue activities you enjoy. The volunteer may also help you prepare a meal, do some chores, or just be there for you. To request a volunteer, contact the Volunteer Coordinator.
  • Assist you or other family members in completing an Advance Directive.
  • Talk with you and your family about adjustments and stresses related to the illness and ways to cope.
  • Help you and your family understand what is happening and what to expect throughout the dying process.
  • Coordinate a change of location, if needed.
  • Problem-solve solutions to situations that are creating stress.
  • Identify community resources if you need more help.
  • Offer grief counseling to help you work through issues related to the upcoming loss. Bereavement services are available upon admission to hospice and for up to thirteen months after the death.
  • Provide support and reassurance during a challenging time.
  • Offers Caregiver Support Groups. Click here to view the event calendar for group schedules.
  • Offers Powerful Tools for Caregivers, a 6-week educational program designed to help family caregivers. Call 541.757.9616 to find out when the next class will be held.
Role of Hospice Patient's Primary Caregiver