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What does it mean to be a Primary Caregiver?

by Viki Kind, End-of-Life Expert
December 27, 2012

Question: My father will be starting hospice care soon and I have registered as a primary caregiver. What does this involve?

Answer: I have not heard this term, “primary caregiver,” used in context of hospice care.  It is possible you live in Canada or another area that uses a different model for providing hospice care. What it probably means is that you are accepting a certain amount of responsibility for the care of your father. This doesn’t mean you are alone and have to do all the work. The wonderful thing about hospice is that you will have a team of people who can help you as you care for your father. 

Whenever I have questions about the medical care my loved one is receiving, whether in a hospital or in hospice, I try to go directly to the source to get my questions answered. I would encourage you to speak to the social worker from the hospice to find out what will be required of you. 

If you would like to give me more information regarding where you live, I would be glad to research this question for you to get a more complete answer.

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Viki Kind is a clinical bioethicist, professional speaker, and hospice volunteer. Her book, The Caregiver’s Path to Compassionate Decision Making: Making Choices For Those Who Can't,” guides families and professionals through the difficult process of advocating for those who can no longer speak for themselves. She has recently launched a DVD that includes a template to create a quality-of-life statement.

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