Resources for ALS caregivers

Being a caregiver for someone with ALS is challenging. But it's not something that has to be done alone. Just as you provide assistance and support to your loved one, there are organizations that can help you.

Consider the energy, physical and emotional, that you put into taking care of your loved one. You need to make sure that you take care of your needs as well. Eat right, get proper rest, and exercise. Take breaks. Keep in touch with family and friends. And – most importantly – ask for assistance when you need it.

Make sure your emotional needs are met, too. You may be experiencing a range of emotions, from resentment to anger to sadness. Accept that these are perfectly normal feelings to have. If it helps, keep a journal or a diary so you can express your feelings. And if you worry that you are experiencing depression, talk it over with your health care provider.

Caregiver associations and services

The following organizations and agencies offer information and assistance through their resources. For caregivers of someone with ALS, these organizations offer help coping with the physical and emotional challenges that caregivers face.

National Family Caregivers Association (NFCA)

The National Family Caregivers Association offers support and education for the more than 50 million people throughout the United States who provide care for a loved one. The association does not specialize in nervous system disorders, but provides caregiver support for a variety of conditions, including ALS.

In addition, a peer-to-peer networking program helps families establish contact with those dealing with the same disease or similar circumstance. In this way, families can share experiences and exchange valuable information.

10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Phone: (800) 896-3650 or (301) 942-6430
Fax: (301) 942-2302
www.nfcacares.org

National Alliance for Caregiving (NAC)

The National Alliance for Caregiving (NAC) is a nonprofit group of national organizations giving support to family caregivers and the health care professionals who help them. NAC works to increase public awareness of issues facing family caregivers. The group also strives to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients. NAC members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.

4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
www.caregiving.org

Well Spouse Association (WSA)

The Well Spouse Association is a national, not-for-profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. At monthly Well Spouse support groups, members can share their thoughts and feelings openly in a supportive, non-judgmental environment with others who are facing similar circumstances. Well Spouse support groups are also an excellent source for information on a wide range of practical issues facing spousal caregivers. Well Spouse support groups exist or are being formed in many areas of the country. To contact a support group near you or to learn how to start a group, please go to the "Support Groups" page on the Well Spouse Web site.

63 West Main Street, Suite H
Freehold, NJ 07728
Phone: (800) 838-0879 or (732) 577-8899
Fax: (732) 577-8644
www.wellspouse.org

The National Respite Locator Service

Hosted by the Chapel Hill Training-Outreach Project, Inc, The National Respite Locator Service is a national directory of respite services that helps caregivers find a respite program in their area. Respite care programs provide complete patient care, either in a hospital or home setting, and are designed to give family members a break from caregiving duties. Although some respite programs specialize in certain diseases and types of care, many have the expertise to provide care for ALS patients. The National Respite Locator Service is run by Access to Respite Care and Help (ARCH), an organization that oversees a nationwide network of respite programs. The ARCH network is funded by the US Department of Health and Human Services, Administration on Children, Youth and Families, and Children's Bureau.

Chapel Hill Training-Outreach Project, Inc.
800 Eastowne Drive, Suite 105
Chapel Hill, NC 27514
Phone: (919) 490-5577
Fax: (919) 490-4905
TDD: (919) 490-5577
http://chtop.org/ARCH/National-Respite-Locator.html

Family Caregiver Alliance^® (FCA)

The Family Caregiver Alliance^® is a valuable resource for family members of ALS patients. The group specializes in nervous system disorders, including ALS. In addition to maintaining a network of resource centers, this organization sponsors education and training workshops, respite programs, support groups, and conferences. It also conducts consultations on the telephone and offers information and referrals.

180 Montgomery Street, Suite 1100
San Francisco, CA 94104
Phone: (415) 434-3388 (in California)
(800) 445-8106
www.caregiver.org