For families of ALS patients, providing home care can be an infinite challenge

Karen Mey lies motionless beneath a tan electric blanket pulled up to her chin. Next to her recliner, a machine the size of a toaster oven huffs rhythmically like a person in deep sleep, pumping air through a corrugated tube into a plastic valve in her neck.

Even though her body is immobile, Mey’s eyes are animated, filling with mirth or tears as she participates in the living room conversation among her husband, daughter, and a personal care attendant. Mey smiles often, and she voices affirmation (“Uh-huh! Uh-huh!”), disagreement (“Uh-uh”), dismay (“Awwww”), and words that only those who know her well can understand.

At age 54, seven years after amyotrophic lateral sclerosis started destroying the connections between brain and muscle, Mey remains a vibrant presence in her family’s life. But as her husband and children piece together the resources to keep her home, they are confronting a new worry.

Boston Globe