Award-winning End of Life Educator Barbara Karnes takes a deep dive into the unique challenges of caring for someone with dementia at end of life.  Caregivers often find their responsibilities accumulating over time as the disease trajectory continues. They’re forced to live in the present, to see their loved one as who they are today.  The goal is to bring joy and quality of life to a beloved today, in this moment.  

Hospice care for a person with end stage dementia can be tricky.  The timing of the admission is often difficult to determine, and patients are often discharged from hospice if their health decline is not evident, which means the patient no longer meets hospice criteria.  When a patient needs to be discharged, it’s vital that the hospice team support the caregiver with robust discharge planning.  That caregiver needs all the resources and support the team can provide before the hospice care ends.  Discharge from hospice can feel like abandonment to a caregiver.  Where will the medical equipment, medications, and personal care assistance come from?  The hospice team is responsible for helping caregivers set up a system of support that can be there when hospice workers are gone.

Isolation is also a big concern for caregivers providing care for someone with dementia.  It’s important to have a support system of friends and community who will fill in when the caregiver needs time away.  It truly takes a village.  Caregivers deserve to have quality of life, too.

You can find Barbara’s dementia guide “How Do I Know You?” at bkbooks.com.

Purchase “By Your Side” from Barbara Karnes here.  

Read Barbara’s blog at bkbooks.com.

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Odonata Care offers help for caregivers at thecareplan.net.

Order your copies of The Care Plan here.  It’s available in English and Spanish!

Check out the free video tutorials from Nancy Heyerman and Brenda Kizzire here.  

Register for the Tree of Life Conference from the International Doula Life Movement here. 

Want to know more about doulas, or connect with others who are doing death doula work?  Visit internationaldoulalifemovement.com. 

If you’re interested in becoming a certified death doula through IDLM, click here.

Access all the courses that IDLM provides here.

See all the events that IDLM is offering by clicking here.  

Connect with IDLM on social media.   Facebook    IG   YouTube 

If you have questions about hospice care or need to troubleshoot the care you’re already receiving, book a session with an expert Hospice Navigator at theheartofhospice.com.  

Book podcast host Helen Bauer to speak at your event or conference by sending an email to [email protected].

Find more podcast episodes from The Heart of Hospice at The Heart of Hospice Podcast (theheartofhospice.com) 

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