ALS & Caregiving

Whether you care for someone who has been recently diagnosed with ALS, has been living with ALS for a long time, or are adapting to new challenges, a strong support network is essential for your wellbeing and the wellbeing of the person with ALS. Making sure you are also taken care of can help create an environment that minimizes stress and conflict.

Defining your role as a caregiver can be hard as no two people with ALS are the same or will progress the same way. Your involvement as a caregiver will also change along the way. Responsibilities may include helping a loved one with daily activities and managing their health and finances.

Whatever your responsibilities, you should define “caregiving” for yourself. Early in the ALS journey, you might not feel like you are actually “giving” care. Similarly, your loved one might not see themself as someone in need of care. But remember, care is not limited to physical tasks. Care can be emotional and spiritual as well as physical.

While your loved one’s ALS diagnosis changed your life overnight, caregiver is a role and an identity that you grow into. Being a caregiver does not have to erase or replace any existing ways you self-identify. Taking care of yourself can revitalize your energy and help you realize that you are not alone.

The Les Turner ALS Foundation’s Support Services team is here to support you every step of the way. If you do not currently have an ALS Support Services Coordinator, please reach out to or your local ALS organization for help.
Click on any of the topics below to learn more about making decisions on caregiving:

Hear other people’s caregiving journey

Family and friends form the majority of caregivers for people with ALS, although some people do choose to hire professional caregivers. Caring for someone with ALS can be extremely challenging at times, but it can also be very rewarding.

Over the years, caregivers have told us that caregiving has provided the following benefits:

heartFinding a sense of purpose

heartFeeling a sense of accomplishment

heartKnowing you are making a difference

heartBuilding a deeper connection with your loved one

heartIncreased confidence to handle challenging situations

However, caregivers often experience physical and emotional distress, which can lead to a decreased quality of life. It is essential to take care of yourself to support a positive outcome for both you and the person living with ALS.

Caregivers Only Support Group

The Les Turner ALS Foundation’s Caregivers Only group offers a time to talk about issues caregivers face in a non-judgmental, accepting atmosphere without their loved one living with ALS being present. Explore support groups.

Learn more about ALS care

While no two people with ALS are alike or will progress the same way, there is a great deal of collective knowledge and wisdom available from your ALS Care Team, people living with ALS, and caregivers. Learn more about ALS Care.

Here is what some caregivers have told us:

“A diagnosis of ALS does not mean your life has to end. You can still enjoy the little things in life.”

“Connecting with other ALS caregivers has helped me feel like I am not alone. It has been vital for my mental health.”

“As a caregiver, you just have to trust yourself.”

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Being a caregiver for someone with ALS is the challenge of a lifetime. You are that person's lifeline, and it can be demoralizing to put in such tremendous effort, and still see them decline. My advice: be extremely proactive in finding additional, future caregiving help early, have the difficult conversations about finances and all future directives, and advocate fiercely for everything you need. Most importantly - have fun as often as possible and provide an abundance of love and compassion.

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