Blog Home > Blog > How to Care for Someone with ALS: What You Should Know

What is ALS?

ALS, also known as Lou Gehrig’s disease, stands for “Amyotrophic Lateral Sclerosis” (ALS). It is a devastating diagnosis for an individual to receive.

One of the first things you may want to do after learning a loved one has been diagnosed with ALS is research the condition. You’ll also want to learn how best to support them as the disease progresses. In this article, we’ll talk about what you should know about ALS and how to care for someone who has received this diagnosis. Let’s dive in.

Signs & Symptoms

Let’s start with the basics of the disease.

ALS is a progressive condition, meaning that it gets worse as time goes on. It primarily affects nerve cells in the brain and spinal cord. These nerve cells are known as motor neurons. They specifically control muscle movement. 

As motor neurons become damaged or deteriorate, the muscles will also start to deteriorate. This creates symptoms that start small and gradually worsen. 

Some of these symptoms include:

  • Limb weakness in the arms, legs, or both
  • Difficulty walking
  • Muscle twitches
  • Muscle cramps
  • Stumbling
  • Slurred speech
  • Difficulty with speech
  • Problems when eating or chewing

As time goes on, these symptoms can get much worse, and may lead to:

  • Difficulty breathing or swallowing
  • Muscle paralysis
  • And other life-threatening conditions


Other Things to Know About ALS

Here are some additional physical and mental changes you can expect and things you should know about your loved one’s ALS diagnosis.

  • It does not affect their senses: the ability to see, smell, taste, hear, or recognize the sense of touch remains intact.
  • ALS patients usually keep control of their bladder, bowel, and eye muscles.
  • Physical therapy can extend their independence and safety.
  • A speech therapist can improve speaking outcomes.
  • They may experience difficulty with memory and decision-making.
  • They could also experience sleep disturbances or depression.


How to Care for Someone with ALS: What You Should Know

As a caregiver for someone with ALS, you take on a lot of responsibility. Balancing all of the things that you need to learn, understand, and help with can feel like an uphill battle. Here are the things you can do as a caregiver to make your role a little easier:

Keep reading.

Articles like this one can help you understand the disease, learn about caregiving, and find resources to support both you in your caregiving journey, and your loved one in their ALS journey.

Establish a regular schedule.

As a caregiver, it could be helpful for both you and your loved one to have an established routine. The things we do on autopilot (i.e., out of habit) take up a lot less mental space, which can prolong the quality of care you’re able to provide.

Plan for respite. 

Respite care is an essential part of caring for a loved one with an intensive disease like ALS. Their needs will progressively grow, as your mental and physical bandwidth, if not allowed to rest and recover, will increasingly shrink. Don’t wait until you start experiencing symptoms of caregiver burnout to establish a routine for respite care.

Talk to others.

Though it doesn’t always feel like it, you are not alone in experiencing this journey. Many other caregivers and ALS patients have gone through this before you. It can be incredibly helpful for both you and your loved one to chat with others who have walked in your shoes. They can offer tips, help you set expectations, and may have connections that can help you get better information, and more. Support groups are a great place to find these individuals, but you can also talk to your loved one’s medical care team or therapist(s) if you need help connecting with someone.

Use assistance programs

There are local, state, and federal facilities and programs designed to help support and assist you as a caregiver and your loved one as an ALS patient. Seeking out these assistance programs can make all the difference. Get in contact with the California Caregiver Resource Center nearest to you or join CareNav for help with this process.

Closing Thoughts: Caring for Someone With ALS

ALS is a challenging condition for both the person diagnosed with it and their loving family caregivers. If you are caring for someone with ALS, we invite you to check out our library of free resources

The California Caregiver Resource Center is a 501c(3) nonprofit network of 11 Centers covering the entire state of California here to help connect you with medical resources and support in this journey. To get more information about the resources we have available to you as a California caregiver, contact us at the California Caregiver Resource Center nearest to you or join CareNav for free today. 

Further Reading: How to Support Independent Living: Keeping Your Loved One Safe and in Their Home

As a family caregiver in California, you know that supporting your loved ones at home is a growing challenge. You are essential in helping them stay independent. In this guide to independent living, we’ll show you how to safely support your loved one(s) in their independent living goals. Click here to read all about it.

Share this post: