How to Be a Caregiver for Someone With ALS

For Hanson, who’s had symptoms since 2016 and was diagnosed in 2019, the disease progressed slowly for years. “Wayne was very active in the first few years,” Spijer says. “We lived on three acres. He did all the wood chopping and the heavier outdoor work and worked on the house.”

Gradually, Hanson’s losses have “piled up,” Spijer says. He’s used a wheelchair for three years, can no longer handle eating utensils and needs a device to breathe well at night.

Still, Hanson says, “I’ve never really felt sick … I’ve just lost use of my body.”

For Pat Walker, who had symptoms starting in 2021 and was diagnosed in 2023, a slow onset gave way to a “more textbook” decline, Amy Walker says. Pat now uses a breathing machine with a mask almost constantly and communicates mainly with his eyes, Amy says. He can whisper a few words when his mask is removed.

Most people with ALS die from respiratory failure or pneumonia, Ajroud-Driss says.

How ALS is treated

There’s no cure for ALS and no drug that restores lost strength. However, several medications may help slow the losses. They are:

Riluzole (Exservan, Rilutek, Tiglutik), which comes in pills, liquid or a film that dissolves on the tongue. It’s a widely used “mainstay treatment,” Novak says.

Edaravone (Radicava) is taken as a liquid, by mouth or feeding tube, or intravenously. It’s not as widely used, partly because it can be more expensive, Novak says. It can be taken alone or in combination with riluzole, he says.

Tofersen (Qalsody) is a drug for a small percentage of ALS patients, those who have a mutation in a gene called SOD1. It’s given through spinal injections. It’s in an earlier stage of testing than other approved drugs.

Other medications can help with symptoms like cramps, stiffness and drooling and with the uncontrolled laughing and crying (pseudobulbar affect) sometimes seen in people with ALS.

 “Even though the disease is incurable, the symptoms are treatable,” Ajroud-Driss says.

Patients and caregivers typically get additional help from a team of specialists. Ideally, the team works in a multidisciplinary ALS clinic, a “one-stop shop” where patients and caregivers “come in, you stay the afternoon, and you meet everybody, and we try to address everything” every few months, Ajroud-Driss says. In between, you might check in with the team through video visits, she says.

You can find many such clinics and other providers through the ALS Association. Others are affiliated with foundations, university medical centers or the Department of Veterans Affairs.

The ALS care team

In addition to neurologists and pulmonologists (lung doctors), the treatment and support team may include:

Occupational therapists. They can suggest devices to help people stay independent with eating, grooming and other daily activities for as long as possible.

Physical therapists. They can teach exercises to maximize independence and safety. They can also help people select and use devices like walkers and wheelchairs.

Nutritionists. They can suggest diet changes, like frequent, small meals, to help when chewing and swallowing are more difficult. They can also teach caregivers to use feeding tubes.

Respiratory therapists. As ALS makes breathing harder, these therapists work with patients on solutions, including noninvasive ventilation (NIV), a machine that supports breathing. It works with a face mask and is similar to machines that many people use for sleep apnea. Some people get surgery to place a breathing tube in their windpipe.

Speech therapists. Patients can get help speaking more clearly. As speech becomes harder, therapists can assist with other communication techniques, including some that rely on smartphone apps or computers controlled by eye signals.

What ALS caregivers do 

Just helping someone with ALS keep up with their appointments, equipment and treatments is a big job, Walwer says. Caregivers also play a significant role in keeping the care team up to date, she says.

As symptoms progress, “sometimes I find that patients don’t notice the changes as much as the caregiver does,” she says.

At home, over time, “it really becomes a 24/7 caregiving job,” Walwer says.

Spijer says she’s reached that point. “I’m doing everything — feeding, toileting, hygiene, dressing.” At night, she turns Hanson over in bed; during the day, she transfers him in and out of his wheelchair. 

Amy Walker says her husband needs “total body care.” If he has an itch, she scratches it. If his eyes are dripping, she wipes them. She suctions his nose and feeds him soup and nutritional formula through his tube. She uses a lift device to move him from his bed to a wheelchair or shower chair. She sleeps in a bed next to his in their family room.

While Spijer and Walker have accepted some help while shouldering most of their spouses’ care, caregivers sometimes try to do it alone for too long, Walwer says. Some don’t have deep support networks and can’t afford paid help. Sometimes, she says, people with ALS don’t want anyone else to provide such intimate care.

Ajroud-Driss says that’s not healthy for patients or caregivers: “They need to have backups. [Caregivers] need to be able to leave the house.”

A “patchwork quilt” of support can include Medicaid or VA benefits, Walwer says. She adds that home hospice care is an option earlier than many families realize. Less commonly, she says, families may need to turn to nursing home care.

How ALS affects caregivers

After years of uncertainty, the diagnosis and then gradual worsening have been “a bit like being a frog put in a cold pot of water and slowly being brought to the boil,” Spijer says.

Taking care of her husband, she says, is exhausting but rewarding. “I keep thinking, Wayne can’t do it. I’m so lucky I can.”

Walker says she’s “so grateful” to be her husband’s caregiver but also feels some grief every day as she deals with new losses. “Tears are very close to the surface,” she says, “and I welcome them.”

Walwer says many caregivers feel bad about grieving while a loved one is still alive. Some, she says, feel guilty when they are angry or frustrated with their loved ones at times. Often, she says, “people are shocked by their emotions.”

It can be helpful to talk with professional counselors or other caregivers, who can assure you “you’re doing the best that you can,” she says. 

Spijer says she benefits from an in-person support group once a month and has also attended online sessions.

Walker says a Facebook caregivers’ group has “really been amazing” for her. Just as important, she says, are the friends who text a few words of encouragement or send a card, as some old work friends do weekly.

Caregivers also “need their own time” to recharge and avoid burnout, Novak says. “You need that energy to get through the days.”

Spijer says she arranged regular respite care for Hanson over the past couple of winters so that she could get to an ice rink for her weekly curling matches. Walker takes quick, mind-clearing walks when an aide is there.

People with ALS need moments of normalcy too, Novak adds. “Getting diagnosed with ALS doesn’t mean you have to sit at home and wait to die.”

Spijer and Hanson still get out quite a bit. A few months ago, they took their family dogsledding at a resort with special sleds for people with physical disabilities. They have taken advantage of forest bathing, crafting activities and museum tours organized by the ALS Association. 

The Walkers don’t get out together but still enjoy each other’s company, Amy says. “I’m so thankful we’re crazy about each other because now I’m seldom away from him.… We still laugh, have fun and notice the ‘God glimmers every day.”