When Ginny Masullo’s husband suddenly turned his back on their habitually robust sex life, she thought he must be cheating on her. He denied it. The actual cause was far more devastating. His mistress turned out not to be a person, but a disease: primary progressive multiple sclerosis.
Nick Masullo had a mighty willpower. He believed he could beat the diagnosis with a diet of natural foods. When that didn’t work, he tried radio waves, hyperbaric therapy, chemotherapy … 53 different modalities in all. As a veteran home health and hospice nurse, Ginny knew that primary MS overtakes the body very fast. She was furious at their collective fate. They had been poised, in middle age, to pursue their passions: Ginny as a popular local poet, Nick as a songwriter and performer.
For the first few years, Nick was able to drive a specially equipped van to the town square and play his guitar for the farmers and artists and shopkeepers of their semi-rural corner of northwest Arkansas. Friends called him “the cheerful cripple.”
Ginny saw another side. Over the next three and a half years, her powerful ice hockey-playing husband shriveled into a quadriplegic. “He would periodically ask me to kill him,” she says.
It is not uncommon for people who are seriously ill to wrestle with willing themselves to live and wishing they could die. Having seen so much pain and suffering as a nurse, Ginny had always thought she could assist a loved one who wanted out. But this was not the case with her mate.
Ginny was the statistically average family caregiver: a woman in her early 50s with a teenager still at home and a full time job. Like most wives, she took on the full burden of her husband’s care, alone. To keep her job, which preserved their only income and health insurance, she had to get up at 4 am. It took three hours for her to perform her husband’s bowel ritual, and then to feed, dress, and transition him into his wheelchair.
Desperate for help, Ginny sought out an art therapist who said “Forget about talk therapy! We need to pull together a group of your friends to brainstorm about how to care for Nick.” The Masullos had been active in service to their community for 30 years and were widely loved.
Nick was angry with Ginny for bringing helpers into their home. But he also refused to go to a hospital or institution. So his wife built a nursing home for one.
There were three keys to success. First, Ginny called the Schmieding Center in Springdale, one of the rare nonprofit organizations that trains home health aides to be professionals. She found a reliable man who, for $15 an hour, could take over most of the morning routine. Second, Ginny helped her husband overcome his sense of shame in accepting outside help by inviting him to join the group’s brainstorming sessions. Accustomed to managing 50 employees, Nick was able to use his managerial and computer skills to help build and schedule a list of helpers. Third, he and Ginny collaborated on a list of very specific tasks and times, so that no one had to commit to more than one hour.
The couple built an extraordinary care circle of 70 volunteers. Friends alternated in getting Nick in and out of his wheelchair for lunch, naps and outings. Revitalized, he produced CDs of his original songs and books of original essays. Volunteers showed up some evenings to give him a massage or read to him so Ginny could get back to her poetry. This was the beginning of her journey back to her self.
After seven years, Nick told Ginny he was ready to take responsibility for ending his life. “You can just stop eating or drinking,” she said. “I won’t put a feeding tube in.” 24 hours after his last meal, Nick was released from the coils of conscious pain. His wife and friends had made it possible for him to remain proudly in control of his life to the end.
This extraordinary story can help other caregivers of people with chronic or serious long-term illness. Ginny Masullo is developing a simple how-to booklet which I will post on my website: gailsheehy.com.
Journalist and lecturer Gail Sheehy is the author of 16 books about adult life stages, including Passages in Caregiving: Turning Chaos into Confidence.