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Family Caregivers Express Challenges in Living with ALS

November is National Family Caregivers Month, and The ALS Association wishes to thank the special people who serve as family caregivers. Caregivers give of themselves around the clock to support the significant physical, developmental or emotional needs of spouses, children, parents and other loved ones who require daily assistance. The theme for this year’s campaign is “Caregivers Need Care Too.”

Caregivers of people with ALS face particular challenges because of the devastating nature of the disease. Sharon Greenman, whose husband Wallace Swofford was diagnosed with ALS in April 2011, says that “the toughest thing about being an ALS caregiver is that you know what the ultimate outcome is going to be,” and that coming to terms with that outcome is difficult for all involved.  “You know are losing your spouse” or other loved one, she explains. “You are basically losing everything.”

Louise Hensley, who has been caring for her husband Lynn since his ALS diagnosis in September 2010, says that she never “thought much about what being a caregiver means” until she experienced the changes brought on by Lynn’s ALS. “What was shared by two is now handled by one,” she explains.

Often willingly undertaken out of love and devotion, caregiving can exact an emotional toll and adversely affect the caregiver’s physical and psychological health over time. As a result, caregivers often neglect to take proper care of their own physical and emotional health. Hensley, for example, says that her children sometimes chide her for eating nothing but cereal. Now that her husband must eat through a feeding tube, she no longer sees a reason to cook unless she has guests.

Although her family and friends are supportive and caring, Hensley writes, “I don’t think it enters their minds how isolated we sometimes feel.”

Greenman says that friends and family can support caregivers in a number of ways. “When it’s possible, give the primary caregiver a break from their responsibilities and don’t be afraid to give them a reason to laugh,” she suggests. “Take them to a movie or dinner. Ask, ‘Can I take your car in to have the oil changed?’” Household chores that seem insignificant to others can become a burden to caregivers who provide around-the-clock assistance to their loved ones with ALS.  Even changing a hard to reach light bulb or picking up a few groceries can help.

Finally, Greenman says, simply let caregivers know that you are thinking of them, and that you appreciate them. “Caregivers are there in the background” and can feel “taken for granted,” she explains. A sincere gesture of appreciation no matter how large or small makes a difference.

The ALS Association is grateful to the thousands of people who take care of family members and loved ones with ALS. To support caregivers, The ALS Association offers helpful resources for caregivers. Resources include caregiving tips and hints, information on coping with the demands of caregiving, respite care, and more. Additionally, The ALS Association will host a webinar for caregivers about how they can benefit from assistive technology on November 18.

If you know a caregiver who deserves a special thank you, please send them an e-card during November to show your support. For each e-card sent, Permobil, the world’s leading manufacturer of power wheelchairs, will donate $10 with a $25,000 maximum donation. 

To learn more about what you can do to join the fight against ALS, visit the “Advocate” section of The ALS Association website at

About National Family Caregivers Month

The National Family Caregivers Association (NFCA) began honoring family caregivers in 1994 during Thanksgiving week. Later, November was named National Family Caregivers Month. More than 65 million Americans fill the role of family caregivers, providing an estimated $375 billion in unpaid care to their relatives each year.

Listen to "Family Caregivers Unite!" radio broadcast on VoiceAmerica.




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