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Living with MS

MS and Home Caregivers

"I think at the beginning of a caregiver journey that the more honest you are with your emotions and with your thoughts, the easier it will be for you when you come to a time when you face something that's very difficult for you to do or something that you feel that you really cannot do."
Karen Henderson
Caregiving specialist/caregiver's advocate

General Information


A Guide for Caregivers
A caregiver is most often a partner or spouse, but can also be a child, parent, or friend

 Advanced Multiple Sclerosis: Complications and Caregivers
About providing care, getting help, and managing complications
The Challenge of Long-term Care
Approximately 20% to 25% of individuals with MS need long-term care at some point

For Families

 Someone You Know Has MS: A Book for Families
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
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
Discusses some of the more difficult physical and emotional problems many families face
NEW! Caring for Loved Ones with Advanced MS: A Guide for Families (PDF)

Help at Home


Hiring Help at Home
Checklists and worksheets for people who need help at home. Forms for a needs assessment, job description, and employment contract

 Modifications for Work and Home
Design changes can enable people to live with MS more comfortably and productively

Long-Term Care and Assisted Living

 New Projects in Long-Term Care
To Share with Your Healthcare Provider

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.

Lotsa Helping Hands

When friends & family need help

Lotsa Helping Hands is a free caregiving coordination web service that makes
it easy to help loved ones in need. It's an easy-to-use, private group calendar, specifically designed for organizing helpers.
Learn more about Lotsa Helping Hands


webcast icon Webcast

MS Learn Online presents
Positive Relationships
Care Partners
Learn more about other webcasts

support icon Support

Contact your Society chapter for information on educational programs and self-help groups near you.
Call 1-800-344-4867.

National Family Caregivers Association (NFCA)
Organization that educates, supports, empowers and speaks up for the millions of Americans who care for chronically ill, aged or disabled loved ones.



Well Spouse Foundation


"In the early morning hours, I'd cry quietly to myself. At first I was afraid I was going to die, and then I was afraid I was going to live. That's when Emma would come silently into my room to comfort me."
Read more about Emma and Rosalee

“She’s My Partner”
Because more women have MS, more men may be involved as partners and caregivers.


Carepartners should investigate…

Life planning, which includes income tax issues, protecting existing assets, saving for future financial needs, and end-of-life planning.

The coverage and policies of their medical insurance, including Medicare, Social Security benefits, and available private disability insurance.

Visit our Life Planning and Independence section for resources on health insurance and Medicare, SSDI, ADA, and more.



The Comfort of Home—Multiple Sclerosis Edition

The Comfort of Home, Multiple Sclerosis Edition: An Illustrated Step-by-Step Guide for Caregivers
by Maria Meyer with Paula Derr
Read our review | Order through Demos Publishing*

The Comfort of Home

The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers, 2nd Edition
by Maria Meyer with Paula Derr
Order through Demos Publishing*

A Family Caregiver Speaks Up A Family Caregiver Speaks Up
by Suzanne Geffen Mintz
Order through National Family Caregivers Association
All proceeds from the book benefit the National Family Caregivers Association
Mainstay: For the Well Spouse of the Cronically Ill Mainstay: For the Well Spouse of the Cronically Ill
by Maggie Strong
Order through Amazon.com
Multiple Sclerosis: A Guide for Families Multiple Sclerosis: A Guide for Families
by Rosalind C. Kalb, PhD
Order through Demos Publishing
More books about MS and family life, caregivers, and well spouses
  *All orders placed on Demos Publishing web site receive a 15% discount from list price.
Last updated February 15, 2008
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