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.
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:
Finding a sense of purpose
Feeling a sense of accomplishment
Knowing you are making a difference
Building a deeper connection with your loved one
Increased 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.
“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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