“Knowledge is power? No. Knowledge on its own is nothing, but the application of useful knowledge, now that is powerful.”
― Rob Liano – Integrity First Consulting Group, Inc.
As a caregiver, it is often a struggle to understand exactly what is the best course of action at any given time. Decisions sometimes have to be made quickly and often stress is created from a lack of knowledge – knowledge about a particular disease, knowledge about proper care methods, knowledge about physical and mental support, knowledge about legal and financial issues.
Caregivers enter into this selfless position with all the best intentions, but sometimes feel guilty if they fall short of their own expectations. Useful, targeted knowledge can help avoid those guilty feelings.
You gain knowledge every time you read our blog. That’s a quick resource. You gain knowledge each time you ask questions, whether it is to a Hospice of Montgomery team member, a doctor, a counselor or a clergy person.
This particular blog is dedicated to pulling together, from many sources, a list of suggested readings that might also be helpful in your pursuit for knowledge that can help you be the best possible caregiver. Along with reading materials, there are also websites that may help broaden your knowledge in different areas. Some of them offer webinars and video materials that are focused on caregiving.
This blog is posted as a resource that you can visit over and over again. Don’t let it overwhelm you with its vastness. No one says you have to read everything on this list in order to be a wonderful help to your loved one. Take a look. Find topics that you feel will enrich your experience or lower your stress and help you with the responsibility you have taken on.
Caregiving and Loss: Family Needs, Professional Responses. Published by Hospice Foundation of America, 2001
With approximately 25 million family caregivers in this country, one out of four households are providing care for a loved one. It is important for healthcare professionals to understand the unique needs of family caregivers and offer compassionate support. Featuring writings from 13 nationally recognized experts in the field of caregiving and loss, this book was developed in conjunction with HFA’s award-winning Living With Grief series.
The fearless caregiver: How to get the best care for your loved one and still have a life of your own. Sterling, VA, Capitol Books Inc.
“Experts” on caregiving address topics such as legal and financial matters, care tips, dealing with medical personal, specialized caregiving, care of the caregiver, holidays, caregiving outside the home, and “end of life” considerations.
Therapeutic caregiving: A practical guide for caregivers of persons with Alzheimer’s and other dementia causing diseases. Bridges, B. J. (1995). Mill Creek, Washington, BJB Publishing.
This book is a down-to-earth practical guide for caregivers of persons with dementing illness. A chapter on “The Therapeutic Role of the Caregiver” identifies feelings and role changes of the caregiver and where to get support. Practical suggestions for “ caregiving” are provided throughout the book.
Living with grief: Who we are. How we grieve. Doka, K, J. & Davidson, J.D. (Eds.) 1998). Philadelphia: Brunner/Mazel.
The Hospice Foundation of America provides many services to people throughout the U.S.A. This book includes a series of articles related to loss and grief with emphasis upon spirituality, ethnicity and culture, and helping people “make sense out of loss.”
Goodwill: Neighbors helping neighbors program really does involve “good will” (2002). Utah Spirit, January, pgs. 24-25.
This article describes a community-based program designed to involve neighbors in helping meet the needs of low-income seniors with limited social supports. Volunteers are instrumental in providing services to seniors who need a “helping hand.”
When aging parents can’t live alone: A practical family guide. Rubenson, E.F. (2000). Lincolnwood, Illinois, Lowell House.
Information in this book will help families decide if placement in an alternative living situation is the best choice for an elder family member. The author also addresses how to help families make a thoughtful and informed decision about which alternative living situation would best meet their elder’s needs. The author provides step-by-step guides in examining concerns that relate to physical, emotional and mental health, personal finances, insurance coverage and benefits, safety, costs, accessibility and available services.
As parents age: A psychological and practical guide. Ilardo, J.A. (1998). Acton, Massachusetts, VanderWyk & Burnham.
Many decisions are faced by people as they age – for the elders themselves, their children and other supportive family members. Issues to be addressed and available resources are identified. Helpful checklists and worksheets are provided. Topics addressed include: (1) the impact on the family; (2) what to do if your aging parent has a mental problem; (3) helping your parent stay at home for as long as possible; (4) when a parent must leave home, and others.
How to Care for Aging Parents By Virginia Morris, Workman Publishing Group
This book is a comprehensive, helpful resource providing information regarding financial, legal, medical, psychological and day-to-day resources important to people as they age and for the person who will direct their care.
A Caregiver’s Challenge: Living, Loving, and Letting Go By Maryann Schacht, MSW
“Many books address the needs of patients; few speak to caregivers. A Caregiver’s Challenge combines personal experience and professional expertise to provide the knowledge and support that caregivers need.
There are many informational brochures created and distributed by the Hospice Foundation of America. Some of them can be conveniently downloaded. Here are a few titles:
This brochure recognizes that the challenges brought about by terminal illness and loss affect not only the person experiencing it, but also family members, co-workers and all those touched by the situation. This brochure offers stories and advice for those who want to help but don’t know what to say or do.
This brochure offers insight into the dying process. Although the diseases, relationships and circumstances are different, a terminal illness involves similar issues and difficulties. This brochure offers some guidelines, provides a sense of understanding, and emphasizes the need for caregivers to take care of themselves.
Many people who are caring for a terminally ill person have never done it before. A Caregiver’s Guide can serve as a sensitive, helpful resource for families who are being served by hospice. A Caregiver’s Guide to the Dying Process prepares caregivers by discussing both the physical symptoms of dying and the psychological issues that accompany the dying process. It may also be used by hospices and other end-of-life organizations as a helpful training aid for staff and volunteers.
Trying to understand the nuances of rules and regulations can be overwhelming. This is the official government publication for Medicare hospice benefits.
Government publications on political issues regarding aging and caregiving:
Who will provide care? Emerging issues for state policymakers (2001). Proceedings of the Family Caregiver Alliance, National Center on Caregiving, 25th Anniversary Conference Proceedings. San Francisco, CA, October 26-27.
Among the issues addressed at this conference were the following: (1) Long-term Care; (2) Respite Care; (3) Family Caregivers and the Workplace; (4) Paying Families to Provide Care; and (5) Implications for Family Caregivers.
Aging in the 21st Century: Consensus report (2002). Stanford, California: The Institute on Women & Gender.
“Experts” on aging identify critical issues faced by elders and their families in the 21st Century. Topics include: (1) Living (and Dying) Longer; (2) Caregiving; (3) Inequities Mount; (4) How Social Institutions Fail; and others.
There are also a variety of magazines and websites all geared to help caregivers learn more about their roles.
The Hospice Journal