Welcome to House of Light, a blog produced and managed by the staff of Casa de la Luz Hospice. Casa de la Luz ("house of light" in Spanish) is a locally owned and operated hospice, serving the city and surrounding communities of Tucson, Arizona. Through this blog, we hope to offer education, information, and support about caregiving and hospice care to terminally ill patients and their loved ones. For more information, visit the contact us page.

Monday, July 30, 2012

Hospice Care: The Role of the Primary Caregiver

When you are admitted to our hospice program, you will be asked to identify a person as your primary caregiver. If you are living at home, your primary caregiver is responsible for providing your daily care, with assistance from the hospice team. If you are living in another care setting, your primary caregiver is consulted regularly regarding your care.

The role of primary caregiver is very important. This role can be demanding, but also deeply rewarding. Primary caregivers actively participate in meeting their loved one's needs, adding greatly to their comfort and quality of life.

Your primary caregiver ensures that care is provided to you 24 hours a day, as needed. Often, this means sharing the responsibility of care with other family members, friends, or hired caregivers. Your hospice team does not provide 24-hour care, and cannot take the place of family and friends.

Your primary caregiver is considered a member of the hospice team. Team members depend upon her/his observations of your daily progress and your needs. S/he is included in decision making regarding your care. When the hospice team makes regularly scheduled visits to your home, they teach your primary caregiver how to provide your physical care as well as extend emotional and spiritual support to both you and her/him.

In addition to scheduled visits, Casa de la Luz Hospice staff is available 24 hours a day, seven days a week. A nurse is always available to speak with you by phone, or to visit if needed. In the case of an emergency, or a change in your condition, the primary caregiver should always call Casa de la Luz Hospice. A Casa nurse will assess your situation promptly, and extend support as needed.

At Casa we value the commitment primary caregivers make to their loved ones, and we will do our very best to provide caregivers with the support and resources they need.

If you are a family caregiver seeking support in the Tucson area, visit our sponsored website, Living with Serious Illness for a list of community resources. For those not in Tucson, try contacting your local area agency on aging.

Adapted from The Care Companion, a Casa de la Luz Hospice publication

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