Caring for Someone with ALS

Caring for someone with amyotrophic lateral sclerosis is a long-term commitment. Remember, however, to avoid losing yourself while caring for a loved one.

When you take care of someone with a stomach virus or the flu, you know they’ll recover from their illness within about week, and you’ll step down from your role as caregiver. Caring for someone with amyotrophic lateral sclerosis (ALS), however, is a long-term commitment. The disease doesn’t improve. In fact, it worsens. You can spend years devoting yourself to the job.

About 16,000 Americans have ALS. Because of the progressive nature of the disease, every one of them will eventually need help getting dressed, brushing their teeth, eating, and doing virtually every other daily activity. Those responsibilities primarily fall to caregivers, who are often spouses or other close family members.

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Caregivers take on this very difficult job out of love, compassion, and concern for the person with ALS. They may not realize when they enter into this new relationship that caregiving can be as physically and emotionally draining as it is rewarding.

In a study published in BMC Palliative Care, caregivers said they often felt “anger, worry, stress, fear, frustration, and uncertainty.” They can also feel impotent against a disease for which there is no cure. One man who was surveyed for the report said the worst part for him was seeing his spouse’s distress and “only having so many things to say to comfort her.”

The authors said caregiver burden — the stresses associated with taking care of someone with a serious disease like ALS — involves physical, psychological, emotional, social, and practical challenges” that can significantly affect the caregiver’s physical and emotional health.

When the stress of your role seems like too much to bear, here are a few things you can do to ease the caregiving burden.

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