When a Loved One Has ALS

When you care for someone who has ALS, eventually you'll have to help them with almost every daily task -- from personal care to grocery shopping.

Being a caregiver for a family member or friend with ALS can have many rewards. Yet it is also hard on you physically and emotionally. The trick is to find a balance between caregiving and your own needs so that you don't get burned out.

Learn how to care for your loved one without neglecting yourself. Here are some tips that can help:

Learn About ALS

Amyotrophic lateral sclerosis, also called Lou Gehrig's disease, is a progressive disease that affects the muscles you use to walk, talk, and speak. When you hear a doctor or nurse speak of a “progressive” disease, they mean one that gets steadily worse or spreads with time.

You'll be better able to support your loved one if you know a lot about ALS. Read up on the symptoms. Ask the doctor what to expect as the disease progresses. Contact the ALS Association or other groups that educate and offer resources on this disease.

Ask for Help

People with ALS need lots of help. Caregiving can be a 24-hour-a-day job. Don't try to tackle it alone. You'll just burn out. Ask other family members or friends to take shifts. And whenever someone offers to help, always say "yes."

Hire a nurse or home health aide if you can afford it or your insurance will pay. Or, build a community of caregivers with the help of the ALS Association's Care Connection program.

Communicate

Keep in close touch with your loved one's doctor and other members of the care team.

Go to doctor’s appointments. Ask questions when you're not sure of the care routine. Also ask for help or advice when you need it.

Care for Yourself

While you care for your loved one, don't forget about yourself. Your needs are important, too. Carve out time to do the things you love. Go for a walk. Listen to music. Get a massage. Go shopping or to a movie.

These activities also combat stress, which is common in caregivers. If you feel overwhelmed, make an appointment with a therapist -- or just talk to a friend.

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Keep a Circle of Friends

Caregiving can take you away from your friends for long stretches of time. Plan lunches or dinners out and other get-togethers so you don't lose these important connections. You can also stay in touch by phone, email, text message, or through Facebook and other social media sites.

Connect with other caregivers, too. You can meet them through an ALS support group or on online forums such as caregiver.com. They can be a good springboard for questions or concerns you have about caring for your loved one with ALS.

Watch for Signs of Depression

Caring for someone with ALS is very difficult. Caregivers spend around 11 hours a day handling tasks such as bathing, dressing, and meals. The high demands of the job make depression common among ALS caregivers.

Look out for these signs that you have depression:

  • You feel sad, empty, hopeless, or worthless.
  • You've lost interest in activities and things you once loved.
  • You have trouble sleeping.
  • You're angry, irritable, or frustrated.
  • You've lost your appetite and have lost weight, or you're hungrier than usual and you've gained weight.
  • You have trouble with memory and concentration.

If you have any of these symptoms, see your doctor or a mental health care provider. You might need medicine or talk therapy to treat depression.

WebMD Medical Reference Reviewed by Neil Lava, MD on November 24, 2018

Sources

SOURCES:

ALS Association: "Caregiving Tips and Hints," "For Caregivers," "What is ALS?"

Family Caregiver Alliance: "Amyotrophic Lateral Sclerosis (ALS)."

Mayo Clinic: "Caregiver depression: Prevention Counts."

Amyotrophic Lateral Sclerosis, October-December 2009.

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