Hospice/Respite Care

Respite Care

There may come a time during the course of your family member’s illness that you as a caregiver need some time away from the tasks of caregiving. Caregiver stress can lead to physical and emotional distress that can interfere with your ability to provide care.  Respite care programs are designed to provide temporary, short-term assistance in caring for an individual of any age who has special needs.  It is intended to allow the caregivers, often the parents, to take some time away from the child, and even the child some time away from the parents, to allow them to emotionally recharge and become better prepared to handle the normal day-to-day challenges of parenting in the face of a chronic life-threatening illness. 

The word “respite” means rest or relief.  Respite care is a gift of time for rest, given by professionals, other family members or volunteers to the primary caregivers. Respite care comes in many forms and at a variety of locations.  There is a wealth of information available on the Internet to help you learn about choosing respite care, planning for time away, and caring for yourself.

For pediatric respite care and related resources:

http://archrespite.org/archfs11.htm

http://www.nichcy.org/pubs/outprint/nd12txt.htm

http://aappolicy.aappublications.org/cgi/content/full/pediatrics;106/2/351

http://www.medicalhomeinfo.org/

For general respite care resources and the locator:

http://www.archrespite.org

http://www.respitelocator.org/index.htm

http://www.efmoody.com/longterm/respitechecklist.html - an example of a checklist

http://www.acponline.org/public/h_care/6-respit.htm

Hospice Care

Niemann-Pick disease Type A and in most cases Niemann-Pick disease type C result in premature death from complications of the disease. Families often turn to Hospice Care programs for assistance in dealing with end-of-life issues. Further, use of hospice care has extended into the life of the individual with chronic medical needs as complicated procedures and technologies are needed. This is also referred to as palliative care.  Hospice care is thought of as support and care for persons in the last phases of an incurable disease, allowing them to live as fully and comfortably as possible. The patient’s and family’s emotional, social, spiritual, and medical needs are addressed by a multidisciplinary team, often including a nurse, physician, social worker, and clergy. Other services may include medications to control pain and manage other symptoms; physical, occupational, and speech therapy; medical supplies and equipment; medical social services; dietary and other counseling; continuous home care at times of crisis; and bereavement services.  Hospice care does allow for treatment of potentially curable conditions such as pneumonia and bladder infections, with brief hospital stays if necessary.  Hospice programs also offer respite care workers (see above), people who are usually trained volunteers, who take over the patient's care so that the family or other primary caregivers can leave the house for a few hours. Volunteer care is part of hospice philosophy.

Many resources are available to help you learn more about this option:

For pediatric hospice care:

http://www.chionline.org/whoweare/

http://www.nhpco.org/i4a/pages/index.cfm?pageid=3409

http://pediatrics.aappublications.org/cgi/content/abstract/76/5/774

http://aappolicy.aappublications.org/cgi/content/full/pediatrics;106/2/351

For general hospice care information:

http://www.hospicecare.com/

http://www.nhpco.org/templates/1/homepage.cfm

http://www.growthhouse.org/hospice.html

Lastly, don’t hesitate to contact NNPDF for assistance with respite or hospice care information.

Further Reading

1. Hospice Care For Children, edited by Ann Armstrong-Dailey and Sarah Zarbock Goltzer. Hardcover, 294 pages. Published by Oxford University Press, September 1, 1993

ISBN: 0195073126

2. Palliative Care for Infants, Children, and Adolescents: A Practical Handbook Paperback) by Kathleen M. Foley (Foreword), Brian S. Carter (Editor), Marcia Levetown (Editor), 416 pages. Published by The Johns Hopkins University Press, June 24, 2004.

ISBN-10: 080188005X

ISBN-13: 978-0801880056

3. Shelter from the Storm: Caring for a Child with a Life-Threatening Condition (Paperback) by Joanne M. Hilden, M.D., Daniel R. Tobin, Karen Lindsey. Paperback: 240 pages. Published by Da Capo Press, December 17, 2002. ISBN-10: 0738205346

ISBN-13: 978-0738205342

4. Pediatric Pain And Symptom Management Algorithms For Palliative Care (Spiral-bound) by Linda, Wrede-Seaman, M.D. Spiral-bound: 156 pages. Published by: not available. 1st edition, June 13, 2005. ISBN-10: 1888411155, ISBN-13: 978-1888411157

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