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ALS Registry

Caring for the Caregiver

Family caregivers play a vital but often unrecognized role in caring for the chronically ill, disabled or aged loved ones.  That’s why The ALS Association encourages caregivers to celebrate National Family Caregivers (NFC) Month.  Observed every November, NFC Month is a nationally recognized month that seeks to draw attention to the many challenges facing family caregivers; advocate for stronger public policy to address family caregiving issues; and raise awareness about community programs that support family caregivers.

Caregiving is willingly undertaken out of love and devotion for a loved one and can be a source of great personal satisfaction. Yet, over time, caregiving exacts an enormous emotional toll, and can adversely affect the caregiver’s physical and psychological health, threatening their ability to continue providing care. Concern for the ALS patient often causes the caregiver to overlook her/his own needs—eating properly, getting enough rest, taking time to pursue one’s own interests.

The best thing a caregiver can do for their loved one is to stay healthy.  Caregivers need to respect their bodies by taking the signs of exhaustion, stress, sleeplessness, and changes in appetite or behavior seriously.  Ignoring these symptoms can cause a person’s physical and mental health to decline.

Emotional needs are sometimes more difficult to spot and address. Caregivers may experience sadness at the patient’s deterioration, guilt for not being perfect, anger at the burden of responsibility, frustration, depression, and dismay at the endless round of daily chores, even uneasiness and disappointment in their perceived change of relationship with their spouse or parent.

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