Caring for someone with a chronic illness like MS can be deeply satisfying. Spouses and partners, family, and friends can be drawn more closely together by their shared concerns and collaborative efforts. But being a carepartner can also be physically and emotionally exhausting, particularly for the primary carepartner. While this is most often a partner or spouse, the primary carepartner may also be an adult child, parent, or friend. Whoever you are, remember that paying attention to your own health and well-being is essential to being able to care for someone else.
While younger children sometimes assume major responsibilities when a parent has disability due to MS, they should never be called upon to provide a parent’s personal care. Call the National MS Society (1-800-344-4867) if you need help identifying carepartner resources in your community.
A Guide for Caregivers (.pdf)
Practical issues faced by carepartners. Includes resource list.
2010 ADA Standards for Accessible Design, these amended regulations include numerous new or expanded provisions for general nondiscrimination policies including the use of wheelchair and other power-driven mobility devices, the use of service animals, reserving and guaranteeing accessible hotel rooms, selling tickets for wheelchair accessible seating at sporting events and performance venues, as well as guidelines on how the new regulations affect existing facilities.
- Fair Housing Rights of Seniors With Disabilities: What Seniors And Their Families Need To Know, a comprehensive guide explaining seniors’ with disabilities protections against disability-based housing discrimination. Prepared by The John Marshall Law School Fair Housing Legal Support Center.
Someone You Know Has MS: A Book for Families (.pdf)
For children, 5-12. A story about Michael and his family explains MS and explores children’s fears and concerns
When a Parent Has MS: A Teenager's Guide (.pdf)
For older children and teenagers who have a parent with MS. Discusses real issues brought up by real teenagers
PLAINTALK: A Booklet About MS for Families (.pdf)
Discusses some of the more difficult physical and emotional problems many families face
Care for the Care Partner (.pdf)
Preventing carepartner burnout
Help at Home
Hiring Help at Home (.pdf)
Checklists and worksheets for people who need help at home. Forms for a needs assessment, job description, and employment contract
Environmental Adaptations (.pdf)
Design changes to your home or work can enable people to live with MS more comfortably and productively
- Rehab to Home Discharge Guide, a family caregiver guide from the United Hospital Fund of New York's Next Step in Care initiative. This resource includes information specific to the rehab setting, such as equipment and assistive devices needed at home, follow-up care, and financial issues and planning for additional care at home.
Long-Term Care and Assisted Living: Guidelines and Recommendations
Adult Day Programs—These guidelines will be most helpful to those day programs that have little or no experience serving people with MS. Included in the document is basic information about multiple sclerosis and specific recommendations, practical tips, and best practices as they relate to intake & assessment, clinical implications, psychosocial issues, activities & wellness, rehabilitation, and staffing & physical plant.
Assisted Living—Guidance to administrators and staff of assisted living facilities that are seeking to develop effective service plans for residents with multiple sclerosis. These guidelines address the unique set of clinical conditions of residents with MS and provide recommendations to maximize their quality of life.
Nursing Home Care—Information on clinical practice, practical tips and best practices with regard to nursing and daily care, rehabilitation, psychosocial needs and cognitive issues, assisting families with the nursing home admission process, training materials, and resources for health care professionals.