A Beginner's Guide for ALS Caregivers

Chad Birt

Written by Chad Birt on Fri May 06 2022.

Older woman with ALS in wheelchair

Up to 5,000 Americans are diagnosed with amyotrophic lateral sclerosis (ALS) each year, according to the CDC. ALS is a progressive neurodegenerative disease that causes the nerve cells to break down. As the condition worsens, it results in muscle weakness, stiffness, mobility issues, and ultimately, paralysis.

If you have a family member who was recently diagnosed with ALS, you probably have lots of questions. In this article, we discuss some easy things you can do to assist your loved one and improve their quality of life.

1) Talk to your loved one about their goals and wishes

An ALS diagnosis is life-changing. There's no cure and the disease progresses quickly, so it's important to plan for the future.

Arielle Martone, of Find Your Way Mama, a physical therapist and neurologic clinical specialist who has worked with ALS patients in acute rehab and home care settings, recommends sitting down and having a conversation.

"Does your care recipient want to stay in their home?” said Martone. “If so, are they okay if they can't regularly go outside? Can you make their home accessible to the outside? If not, would they be willing to move into an assisted living or skilled care facility?"

She continued, "make sure you have early and frequent conversations with your care recipient regarding their goals and how they see their life playing out."

It's also crucial to draft the following legal documents:

  • A will that discusses what your loved one wants to do with their property.

  • An advance health care plan that details the type of care your loved one does or doesn't want.

  • A durable power of attorney for health care which gives someone in your family the power to make medical decisions.

  • A durable power of attorney for finances which gives someone in your family the power to access bank accounts and other financial documents.

Establishing a strong ALS caregiving plan early on can help set you up for success.

 2) Schedule a home evaluation with a physical therapist or an occupational therapist

After your care recipient is first diagnosed with ALS, ask for a referral to a physical or occupational therapist. "A physical or occupational therapist can visit your loved one's home, assess it and make recommendations," said Martone.

"The main things to consider are bathroom equipment, including grab bars in the shower and near the toilet, a shower chair, and a raised toilet seat. You will eventually need a hospital bed and a power wheelchair, as well as a way to safely help your care recipient get in and out of bed."

Martone also recommends taking steps to reduce the risk of slip and falls. "Make sure to use night lights and remove area rugs or have the corners of larger rugs taped down. You should also clear out all walkways and keep the doors open."

Amyotrophic lateral sclerosis makes activities like climbing stairs difficult. As a result, you may want to consider keeping your care recipient on a single floor. If that's not possible, Martone recommends installing a chair lift or a ramp for easier access.

3) Help your care recipient conserve their energy

ALS makes activities of daily living, like bathing, dressing, cooking, and using the toilet difficult. To prevent injuries and accidents, help your care recipient conserve their energy.

Martone suggests putting all of the kitchen items they need out on the counter. "Clothing items should also be easy to access to avoid overhead reaching and stooping down."

4) Look into braces and other assistive devices

"Bracing is often the first course of action to prevent falls and accidents for patients with ALS," said Martone. "A solid ankle-foot orthotic (AFO) can be used to prevent toe dragging and improve clearance. Orthotics should be custom-fit to prevent skin issues and ensure proper use."

Over time, your care recipient might also need an assistive device, like a cane, a walker, a or rollator to improve their balance.

"Keep in mind that ALS is progressive," said Martone. "That means the equipment might be short-lived before something else is needed." Do your research and assess your care recipient's mobility on a regular basis.

5) Lean on others for support

Being an ALS family caregiver is a lot of hard work. It's normal to experience exhaustion, fear, and uncertainty. While you might want to share these feelings with your care recipient, it's important you don't overwhelm them.

"Acceptance can be a long process," said Martone. "Support groups for family members and caregivers can be very helpful. I also recommend individual counseling. Counseling can occur in the form of traditional talk therapy or in a faith-based setting like a church."

Some of the organizations that Martone recommends checking out include:

Last, remember that there's nothing wrong with asking for help.

"Since ALS is progressive your loved one will need more assistance as time goes on," said Martone. "You, the primary caregiver, are unlikely to be able to do it all your own. You're going to need some downtime and some space for yourself. Don't try to be a martyr, it's not helpful to you or your care recipient. Talk to friends and family to see if you can set up a caregiver schedule."

We hope you've found this overview for family caregivers helpful. By following these tips and tricks, you can improve your care recipient's quality of life and make things less stressful.

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Chad Birt
Chad Birt

Chad Birt is a freelance B2B and B2C medical writer who resides in Astoria, Oregon. When he isn't behind a keyboard, you can find him hiking, camping, or birdwatching with his wife Ella and their two dogs, Diane and Thoreau.