Multiple Sclerosis: Understanding and Communication Important

The National Institutes of Health defines multiple sclerosis (MS) as “an unpredictable disease of the central nervous system. It can range from relatively benign to somewhat disability to devastating, as communication between the brain and other parts of the body is disrupted.” Most people with MS have muscle weakness in their extremities, and balance and coordination difficulties. Half of all people affected ultimately have cognitive impairments.

In 2011, Jeff Gallatin, began the process of grieving after the passing of his 72-year-old mother Carol, who had chronic progressive multiple sclerosis. Carol had been a choir director, a hospice “clown” for children, a storytelling guild president, a Northwestern University marketing graduate, and the community affairs director for a division of Rockwell International in Cleveland.

“It’s still an emotional subject for me,” said Gallatin, an Ohio newspaper associate editor, of discussing his mother’s death. “My mom had polio as a kid, but had always been able to overcome (her physical difficulties). In the mid- to late- ’90s, little physical challenges began cropping up with her. She went from using a cane to a walker to a manual wheelchair. In 2001, I moved in with her.”

Doctors apparently had trouble diagnosing her, maybe because MS usually first affects people between the ages of 20-40. One day about two months after Jeff moved in, Carol couldn’t get out of her rocking chair, which moved a friend to suggest more tests that finally yielded a diagnosis.

“Then they said my mother would never get out of the nursing home (because of MS),” said Gallatin. “But they didn’t know my mother.” After 18 months there, Carol moved back in with Jeff until her passing in 2011. At the end, she had paralyzed legs.

Perhaps the most difficult aspect of being his mother’s caregiver ten years was in having to watch her use a wheelchair. She had been such a proud, professional woman, who had raised two children on her own as a divorcee.

As for advice to other caregivers of parents, he said, “Be sure to talk and communicate with (the parent). For example, our Saturday morning was sacred to us. We’d talk and catch up. She was a wonderful sounding board.”

Gallatin said he wasn’t a perfect caregiver. What helped him a lot was having good bosses, who allowed him to occasionally leave work to help out his mother.