Overview
Caring for a loved one with Amyotrophic Lateral Sclerosis (ALS) is a daunting responsibility, and may be especially difficult when they are first diagnosed. It’s completely normal to feel uncertain, anxious, and scared. This role can be demanding — physically, emotionally, and mentally — but your presence and support can make a real difference in your loved one’s life.
What is ALS?
ALS, also known as Lou Gehrig's disease, is a progressive neurological disorder that affects the nerve cells in the brain and spinal cord. It causes muscle weakness, twitching, and eventually paralysis. These changes can place a heavy emotional and physical burden on caregivers, who often have to adapt quickly to new and demanding responsibilities.
What to Expect
As a caregiver for someone with ALS, you may encounter many challenges. As the disease progresses, your loved one will likely need more help with everyday activities like eating, bathing, and getting dressed. It’s also common for them to experience mood changes, anxiety, or depression as they cope with the loss of independence.
These changes can be difficult for both of you. That’s why it will be just as important to take care of you as well as your loved one.
Caregiver's Journey
I grew up watching caregiving be the norm, woven seamlessly into the fabric of my family. My grandmother cared for her parents, just as my mother cared for her parents and her in-laws. They did it without complaint, without hesitation, as if it was as natural as breathing. When it became my turn, I struggled. I had only seen generations of women suppress their emotions about caregiving, and at first, I thought I had to do the same. But as I care for my mother, she teaches me a different lesson—one of balance and honesty. She encourages me to be open about my struggles, to take breaks, to go on vacations and to continue my hobbies. She wants me to be human, not just a caregiver.
- Shruti R, HeroGeneration Community
In Their Shoes
Think about how you wake up each morning — getting out of bed, brushing your teeth, getting dressed — without a second thought. These tasks are so automatic for most of us that we rarely even notice them. But for someone with ALS, everything changes. Simple actions like lifting a toothbrush or buttoning a shirt now require significant effort, and getting dressed can feel like an overwhelming challenge. What once took just minutes now demands patience, time, and often the help of another person.
Daily rituals, once so routine, become reminders of the independence that’s slowly slipping away, making each task feel more like a struggle, even though others may not see it. As a caregiver, offering support with gentleness and respect — allowing your loved one to do what they can and providing help without rushing — can make these moments a little easier to face.
Setting Goals
As you embark on your caregiving journey for someone with ALS, it’s important to set realistic, compassionate goals in collaboration with your loved one. These goals will evolve as the disease progresses, but some common focuses may include:
Maintaining as much independence as possible: Help your loved one hold onto their autonomy for as long as possible by encouraging participation in daily activities and decision-making.
Preserving quality of life: Focus on comfort, emotional well-being, and finding joy in everyday moments.
Managing symptoms and discomfort: Work with healthcare professionals to control symptoms such as pain, muscle stiffness, and difficulty breathing.
Planning for the future: It’s important to consider and discuss long-term care needs, advance directives, and financial planning early, so there are clear wishes in place for medical and personal care down the line.
TIP: Expect grief in layers. As abilities fade, so do old ways of connecting. Mourn them together.
High-Level Plan
Here's a high-level plan to help you get started:
- Learn about ALS: Educate yourself on the disease, its progression, and available treatments.
- Assess your loved one's needs: Evaluate their current abilities and identify areas that require assistance.
- Develop a care plan: Create a personalized plan that addresses physical, emotional, and financial needs.
- Seek support: Reach out to healthcare professionals, support groups, and online resources for guidance and connection.
- Prioritize self-care: Make time for activities that nourish your mind, body, and spirit.
Resources & Aid
Caring for someone with ALS can be overwhelming. Fortunately, there are many resources available to support you:
List of Resources
Join the HeroGeneration community to find more help and resources for caring for a loved one with ALS.
