For ALS Caregivers

When a person you love dearly is diagnosed with ALS, you know your life is going to change. Just thinking about becoming the primary caregiver can be stressful and overwhelming.

​But 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 guide you every step of the way.
How ALS progresses is out of your control. But how you approach it is in your hands. Some caregivers get so focused on supporting their loved one that they neglect their own physical and mental health. We believe that taking good care of yourself will make you a better caregiver.

Below you will find suggestions and links to helpful resources.
Note: If you do not assist with routine caregiving tasks on a regular basis, please visit our Family and Friends page for ways you can support your loved one and caregiver.

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 care for 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.
We encourage you to continue to exploring this website at your own pace. The People with ALS page is a good place to start. Our goal is to provide clear information, connect you to resources, save you money, expand your support network, and generally make life with ALS a little easier.

Resources for Caregivers

The following resources, specifically for caregivers, may also be helpful:

  • 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
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  • Caring Info – A website from the National Hospice and Palliative Care Organization that provides general information and suggestions for caregivers​ ​​
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