Hospice, Palliative and 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 care giving. 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:
- American Academy of Pediatrics – Palliative Care for Children
- National Center for Medical Home Implementation
- Cincinnati Children’s Special Needs Resource Directory – Day Care and Respite
- Kids Health – Respite Care for children With Special Needs
For general respite care resources and the locator:
- ARCH Respite Network – National Respite Locator
- HELPGUIDE.ORG – Respite Care, Finding and Choosing Respite Services
- Arch Respite Network – How to Choose a Respite Provider
Hospice and Palliative 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 and palliative care:
- Children’s Hospice International
- National Hospice and Palliative Care Organization – Pediatric Hospice and Palliative Care
- American Academy of Pediatrics – Pediatric Palliative Care and Hospice Care
For general hospice and palliative care information:
- Palliative Care by the National Institute of Nursing Research
- Family Caregiver’s Guide to Hospice and Palliative Care
- International Association for Hospice and Palliative Care
- Hospice Foundation of America
- National Hospice and Pallitative Care Organization
- Growth House
- Next Step In Care
Lastly, don’t hesitate to contact NNPDF for assistance with respite or hospice care information.