Dealing with a serious or life-threatening illness is one of the most difficult things any of us will ever face. And living with that illness over time -- be it our own illness or that of a loved one -- compounds the initial difficulty as days and weeks of treatment and caregiving sometimes extend to months or even years.
Feelings of shock often come to the fore with the initial diagnosis, and one finds oneself wondering: "How could this have happened? What should I do next? What kind of treatment is available? What about side-effects?" And, finally, "How will I cope?"
As time passes, the initial flurry of medical testing and treatment often transitions into a new kind of routine, where the side-effects of treatment combine with the effects of disease to bring new issues and concerns to the forefront. Fatigue sets in, along with a plethora of medications, insurance forms, and who knows what else...
And through it all, we seek information -- information about the illness and treatment, about available resources and support. Unfortunately, with such voluminous information on the web and in print, it can be a significant challenge to weed out the good from the bad and find truly helpful resources, organizations, and information. This Guide for Care and Support in Serious Illness was designed to lighten the load of those experiencing serious illness by providing timely information and helpful resources in an easy-to-read and ready-to-use format.
For example, in the Communication section, you will find the 'take-it-with-you' form: "Questions to ask your Doctor." The section entitled Easing Pain contains an overview of pain as well as an effective pain-communication-tool. Under Care at Home you will find information on "Selecting Home Care or Hospice", "Care for the Caregiver", and a "Daily Log" which can be photocopied and used daily to track diet, activity, and changes in overall condition. Health Care includes information entitled "Questions to Ask about your Health Care System," as well as two duplicate forms: "Insurance Information" and "Record of Payments."
Individuals and families should feel free to read and use the Guide for Care on-line, or to print out the guide, placing it in a three-ring binder for easy use at home. (Churches or organizations seeking to use the material for wider dissemination, should contact Consoling Grace at 206-366-2715 or on the web at info@ConsolingGrace.com.)
Parts of this guide were developed originally in 1999 by Compassionate Choices, an organization dedicated to providing life-affirming resources to seriously ill people and their families, and to opposing assisted suicide. Though Compassionate Choices is no longer an active organization, the diligent work of former staff and board members is thoroughly appreciated, as is the permission to reprint portions of this revised guide. In no small part, the guide is available to you because of their dedication. (Note: Please refer to the end-of-page notes to determine which information was created by Compassionate Choices and which information was created by and/or modified by Consoling Grace.)
The January, 2007 edition of this "Guide for Care and Support During Serious Illness" has been revised, updated, and expanded, by hospice nurse, and Consoling Grace Founder and President, Eileen T. Geller, RN, BSN.
Consoling Grace facilitates improved care, support, information, resources and outreach services for ill and bereaved persons, families, and faith communities. We support people during serious or life threatening illnesses and grief, and oppose assisted suicide.
Consoling Grace is an educational organization working to:
We hope you will find this "Guide for Care and Support During Serious Illness" to be helpful to you, and your family, your neighborhood, and faith community. You have our best wishes and prayers.
Please know that the content of this guide is general in nature, and is provided for informational purposes only. Consoling Grace assumes no liability or responsibility for damage or injury to persons or property arising from any information, idea, or instruction contained in the materials provided. This guide is not intended to be relied on for diagnosis or treatment. The content is not intended in any way to be a substitute for professional medical advice. Always seek the advice of your doctor or other qualified health provider with any questions you many have.