When a person you love dearly is diagnosed with ALS, you know your life is going to change. Just thinking about it can be overwhelming.
You do not have to figure everything out on your own—and you do not need to know everything right now. Take things one day at a time. The ALS community is caring and strong. Experienced professionals can answer questions and help.
How ALS progresses is out of your control. But how you approach it is in your hands. Below we begin with some of the most important things you can do.
Note: If you do not assist with daily caregiving tasks, please visit the Family and Friends page.
Important Things To Do
1. Connect with support services.
In most areas, there are local support groups specifically for caregivers, where you can meet other caregivers who understand what you are going through. At ALS clinics, experienced ALS professionals—from neurologists to physical therapists to social workers—can help guide you and your loved one every step of the way.
2. Take care of yourself.
Many caregivers forget to take care of themselves, which can lead to exhaustion, burnout, health issues, and resentment. It may feel selfish to carve out time for your own needs—but it is not. You need to take care of yourself in order to take care of your loved one.
3. Ask for help.
This is one of hardest things for caregivers to do—and one of the most important. You can't do everything on your own. The earlier you reach out to your family, friends, and larger community, the more balance, support, and energy you will have.
4. Take care of your loved one.
In addition to helping with personal care at home, it is important to remember to enjoy some of the activities, people, and pastimes that have always been a part of your life.
5. Read other pages on this website.
This current page is written specifically for you—the primary caregiver. Most of the website is addressed to you and your loved one.
- First, we recommend reading People with ALS in order to learn the concrete steps you will need to take together.
- If your loved one was recently diagnosed, you may also want to read Newly Diagnosed.
- If your loved one is a veteran, he or she may be eligible for generous service-connected benefits through the VA.
- We also encourage you to explore the rest of this site.
Resources for Caregivers
Your ALS Association chapter and ALS clinic social worker are your best places to start. The following resources—specifically for caregivers—may also be helpful:
- ALS Association support groups – Facilitated monthly meetings around the country where you can ask questions, share tips, and connect with fellow caregivers
- Self-Care for Family Caregivers – Advice from the Family Caregiver Alliance
- MDA ALS Caregiver’s Guide – A comprehensive, downloadable guide for ALS caregivers created by the Muscular Dystrophy Association
- ALS Caregiver’s Facebook Page – An online community of fellow ALS caregivers (you must have a Facebook account to participate); there are multiple Facebook groups specifically for ALS caregivers
- Care Connection – An ALS Association program that helps launch, organize, and mobilize your community of support
- Lotsa Helping Hands – A popular online care calendar that helps you coordinate support
- Caring Info – A website from the National Hospice and Palliative Care Organization that provides general information and suggestions for caregivers
- Help for ALS Caregivers – Tips and resources from the ALS Association