CAREGIVING: Support | Alzheimer’s / Dementia | Cultural | Creative Caregiving | Peace & Grace
We can not do great things on this earth.
Only small things with great love.
Mother Theresa
The Challenge of Caregiving
Don’t Panic, It’s OK
Even when people express their end of life care wishes, honoring their choices may be challenging. Dr. Karen Boudreau’s family knows this from experience. She wrote this letter to her loved ones to offer guidance in case they ever need to make difficult decisions at the end of her life.
The Conscious Caregiver
A Mindful Approach to Caring for Your Loved One Without Losing Yourself
by Linda Abbi
An in-depth exploration of the challenges a family caregiver faces, this book provides useful suggestions for tasks such as managing medical care and financial responsibilities, ways to focus on person well-being, and emotional stresses. Focus is on responding to challenges in a calm
and clear manner that helps both caregiver and loved one.
Find the book at your local library or Order it online
A Caregiver’s Challenge: Living, Loving, Letting Go
by Maryann Schacht MSW, BCD
A roadmap and survival guide to everyone who is suddenly thrust into a caregiver role. This book includes lists of helpful organizations, check lists for caregiving. The author offers insights on coping with challenges and changed expectations.
Find the book at your local library or Order it online
Ordinary Magic
Promises I Kept to My Mother Through Life, Illness, and a Very Long Walk.
by Cameron Powell
Cameron Powell has always struggled with goodbyes. On the day his marriage ends, he finds out his mother’s cancer has returned-and this time there may be no escape. Faced with the prospect of more chemo and surgery, his German-born mother, Inge, vows to conquer a 500-mile trek across Spain, and Cameron pushes aside his fears to walk by her side.
Joined by a misfit band of adventurers – a politically incorrect Spaniard, a theatrical Frenchwoman, a teenager who’s never been far from home – Cameron and Inge write a fierce and funny travelogue about the rocky heights and hidden valleys of the Camino de Santiago
But the hardest stretch comes three years later, when Inge’s health declines — and Cameron, ready or not, must accept the challenge to remain as present to his mother as he can. Cameron begins to record, in still more chiseled prose, his real-time impressions of life’s most difficult voyage. What he created has become one of literature’s great love letters — and a uniquely unflinching insight into how we all truly can create love and meaning in our lives, even amidst the fear and sadness we ll all face from time to time.
Find this book at you local library or Order it online
Caring for Yourself While Caring for Your Aging Parents, Third Edition:
How to Help, How to Survive
by Claire Berman
A thoroughly revised edition of the authoritative guide to caring for aging parents. For women and men who are involved in caring for aging parents, and for those who see caregiving in their future, this empathetic and practical book offers complete coverage of all the practical issues you are likely to confront―while addressing the emotional stress and particular needs of caregivers.
Find it at your library or order it online
Graceful Exit
How to Advocate Effectively, Take Care of Yourself,
and Be Present for the Death of a Loved One
by Gustavo Ferner, MD
An experienced physician offers clear and compassionate guidance for the most difficult issues, including: rights under Medicare and health insurance, when to bring your family together, prevention of caregiver burnout; pros and cons of advanced medical treatments versus hospice at each end-of-life stage. He offers suggestions for enabling peace and closure at the end of a person’s life.
Find the book at your local library or Order online
Knocking on Heaven’s Door: The Path to a Better Way of Death
by Katy Butler
Beautifully written, this book is part memoir, part medical history, and part spiritual guide, Knocking on Heaven’s Door is a map through the labyrinth of a broken medical system. Its provocative thesis is that technological medicine, obsessed with maximum longevity, often creates more suffering than it prevents. It also chronicles the rise of Slow Medicine, a movement bent on reclaiming the “Good Deaths” our ancestors prized. In families, hospitals, and the public sphere, this visionary memoir is inspiring passionate conversations about lighting the path to a better way of death.
Find the book at your library or Order it Online
Another Country: The Emotional Terrain of Our Elders
A sensitive and thoughtful investigation of the emotions of aging with advise on improving intergenerational understanding and communication
Find it a your local library or Order it online
The Art of Being a Healing Presence
A Guide to Those in Caring Relationships
by Jamie E. Miller with Susan C. Catchall
This small book offers keen guidance on making a difference in the lives of others by understanding how to be present in a way that is healing, nurturing and potentially transformative.
Find the book at your local library or Order it online
Take Charge of Your Life: What’s Right for You
by the Pennsylvania Department of Aging
Pain treatment often needs to be adjusted.
Support for the Family Caregiver
Family Caregiver Alliance Learning Center
The FCA Learning Center is an online learning community offering information, training, classes and more on your schedule. FCA has consolidated its information in print, audio and video to make it easier to find and use as an educational resource when a caregiver is not able to travel or attend a local event.
Learn more
Read two detailed and helpful articles from the Family Caregiver Alliance
Strategies for Long-Distance Caregiving
by Elizabeth Yukp – New York Times
Read the article
Turning a Home Into a Hospital
By Linda G. Beeler – New York Times
Read the article
Share the Care
A program created by the National Center for Civic Innovation.https://sharethecare.org/ Offers guidance for organizing and maintaining group care situations.
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Caring Bridge
Bract your person Web Page within this site to coordinate care between friends and loved ones.
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National Respite Network and Resource Center
Excellent source of information and resources for finding temporary respite care.
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GrowthHouse
An organization which provides education about life-threatening illness and end of life care. Our primary mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration.
Learn more
Take Charge of Your Life: Sooner Rather Than Later
by the Pennsylvania Department of Aging
Experienced helpers can assist early on in caregiving.
Take Charge of Your Life: Support Group
by the Pennsylvania Department of Aging
Caregivers need community with other caregivers
Caregiver Refuge & Renewal
Renewal
Care for the Journey
Developed by Companion Arts, here are two CDs offering renewal for physicians, nurses, chaplains, social workers, therapists and allied professionals, through spoken messages by Angelas Arrien, PhD, Joan Borysenko, PhD, Ira Byock, MD, Rachel Naomi Remen, MD and many others.
Find Volume 1 and Volume 2 HERE
Retreat Centers
A retreat for caregiver or the one receiving care can provide an essential break to renew spirit, restore energy and purpose in the midst of dealing with serious or terminal illness. Consider one of these sources to find a personal place of renewal.
Franciscan Retreats & Spirituality Centers
Catholic Retreat Centers open to all.
Learn more
Shambhala Mountain Center – Northern Colorado
Tibetan Buddhist retreat and renewal programs year round held in a beautiful setting in near Rocky Mountain National Park.
Learn more
Upaya Zen Center – Santa Fe, New Mexico
Upaya Zen Center is a Zen Buddhist practice, service, and training center. Our vision focuses on the integration of practice and social action, bringing together wisdom and compassion.
Learn more
Commonweal Cancer Help Program
A week-long retreat for people with cancer, The goal is to help participants live better, and where possible live longer lives. The retreat includes finding balanced information on choices in healing, mainstream and complementary therapies; exploring emotional and spiritual dimensions of cancer; discovering that illness can sometimes lead to a richer and fuller life; and experiencing genuine community with others facing a cancer diagnosis.
Learn more
Find the Divine
A resource site for locating a repeat center near you.
See Also: Supporting Family or Friend Through Illness & Grief
Continue the Conversation
Caregivers may need to be the ones to initiate or to revitalize the essential conversation about the patient’s wishes for end of life care. A person’s choices may change over time and that is perfectly normal and acceptable. What is most important is to continue having a conversation about those choices with loved ones, the designated health care Agent, and the primary care providers. It is important for everyone to stay on the same page of understanding and respecting the patient’s end of life care wishes. Don’t wait until the person is too ill or weak to make thoughtful decisions known to all. This is especially important when someone faces surgery, even if it is routine.
Take Charge of Your Life: A Family Way
Do your loved ones know what your wishes are? Funded by the Pennsylvania Department of Aging and produced by the Take Charge Partnership and by members of the Task Force for Quality at the End of Life.
Advance Care Planning Documents are Essential
If you or your loved one have not started the process of Advance Care Planning …
Go HERE to find step-by-step instructions.
Professional Home Care
Important Quality Screening
Researching the qualifications and certification of home care professional agencies, businesses etc. that you might hire is essential. Be certain to research whether or not an agency is licensed and certified not only in your state, but also in the county you live in as well. Some companies are setting up sattelite registries in a county different from the one where they are headquartered and officially licensed. They may not have full liability coverage for any challenges over quality of care if they are not licensed in your county. This could result in your being responsible for taxable income and other charges if proper licensing is not set up. When in doubt it is worth working with a patient representative in a hospital or qualified local consultant.
What to Ask in a Home Care Agency Interview
If you are trying to arrange home health care for a loved one here are some questions you might want to ask.
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National Association for Home Care & Hospice
Learn more
https://www.nahc.org/about/mission-statement/
More Caregiver Resource Organizations
Caregiver Action Network
A non-profit organization providing education, peer support, and extensive resources to family caregivers across the country at no cost.
Learn more
AARP Caregiving
An initiative focused solely on palliative care and care management, hosted by the California State University system. Courses offered online for organizations and individuals; a few face-to-face offerings in Motivational Interviewing, Leadership, and Crisis Communication.
Learn more
In Care of Dad
A support website for family caregivers that addresses place of care options, managing caregiving, emotional support and more.
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Caregivers Library
A comprehensive website of resources, tools and information for caregivers.
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Elder Care
Resources for finding quality care.
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Family and Medical Leave Act
United States Department of Labor.The FMLA entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage as if the employee had not taken leave.
Learn more