Websites

A program of the National Hospice and Palliative Care Organization

Understanding and discussing topics like advance directives, palliative care, caregiving and hospice care may feel overwhelming on top of dealing with a serious or life-limiting illness. Our guides and resources are here to help you through the journey you are on and to aid you in understanding the choices you have. Also available in Spanish.

https://www.caringinfo.org/

Caregiving and other resources for end of life by Barbara Karnes       https://bkbooks.com/ 

“THERE’S A NORMAL, NATURAL WAY OF DYING. MY MATERIALS ARE WRITTEN TO GUIDE AND SUPPORT ANYONE WHO IS ADDRESSING END OF LIFE SITUATIONS. THE GOAL IS TO HELP PEOPLE HAVE A POSITIVE EXPERIENCE SO FAMILIES WILL HAVE A SACRED MEMORY TO CARRY WITH THEM.” - BARBARA KARNES, RN

Powerful Tools for Caregivers Programs https://www.powerfultoolsforcaregivers.org/

CLASSES TO HELP CAREGIVERS TAKE BETTER CARE OF THEMSELVES WHILE CARING
FOR A FRIEND OR RELATIVE.

National Institute on Aging - Source for caregiving information articles including tips for Caregivers

https://www.nia.nih.gov/health/caregiving?utm_source=nia-eblast&utm_medium=email&utm_campaign=caregiving-20231221 

Understanding Wandering Risks With Older Adults --- Approximately 36% of people with dementia will wander.

• The top dangers for people who wander include injuries, dehydration, harsh weather exposure, medical complications, drowning, or being hit by a car.
• Understanding and planning for wandering is vital in caring for someone with dementia.

For many of us, staying at home as we age, also known as aging in place, is ideal. In fact, a recent survey shows 90% of adults [1] 50 and over say they want to age in place. [2] But home safety is critical, and for older adults with cognitive decline, wandering is a safety concern you should consider.  https://www.ncoa.org/adviser/medical-alert-systems/dementia-wandering/

https://www.nia.nih.gov/health/alzheimers-caregiving

Caring for a Person with Alzheimer's Disease: caring-for-a-Person-with-alzheimers-disease.pdf (nih.gov)

Books

A Spirituality of Caregiving: The Henri Nouwen Spirituality Series
by Henri J. M. Nouwen and John S. Mogabgab

Biblical Support for Process Caregiving, Stephen Ministries, 1990

Caring for the Caregiver - A Guide for Congregational Support of Family Caregivers, Lutheran Deaconess Association, 1303 La Porte Ave, Valparaiso, Indiana, 46383, (extensive Bibliography with Resource Lists, 4 sessions, surveys included)

Courage for Caregivers: Sustenance for the Journey in Company with Henri J. M. Nouwen
by Marjorie J. Thompson

God Knows Caregiving Can Pull You Apart:  12 Ways to Keep it All Togetherby Gretchen Thompson

Hugs for Caregivers, by Pauline J. Sheehan.  Questions listed for group discussion included.

Hope for Caregivers: A 42-Day Devotional in Company with Henri J. M. Nouwen
by Henri Nouwen and Susan Martins Miller

Our Greatest Gift: A Meditation on Dying and Caring
by Henri J. M. Nouwen

Take Back Your Life: A Caregiver's Guide to Finding Freedom in the Midst of Overwhelm
by Loren Gelberg-Goff 9 (2018)

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias (A Johns Hopkins Press Health Book)

The Dementia Caregiver's Survival Guide: An 11-Step Plan to Understand the Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout
by Janet G Cruz (2023)

You Need Care Too: Self Care for the Professional Caregiver by Barbara Karnes, RN