It is the little things that define Suzanne Mintz’s ever-changing sense of reality.
These things include questions of how to get dressed, how to take a shower and how to pay for the thousands of dollars’ worth of equipment that insurance policies won’t cover.
Mintz, 52, isn’t the one with multiple sclerosis, but as a caregiver to her husband, Steven, she shares in the painful changes the disease causes.
“Our normalcy includes a wheelchair and the fact that things take longer,” she said. “It means dressing Steven. My sense of reality changes as the illness progresses.”
It also has meant a loss of dreams, revamping priorities, making compromises and continuously adjusting to an unpredictable disease that slowly gets worse.
“It’s like a faucet in a stopped-up sink,” said Mintz. “At first you don’t notice the drip. Then as the water gets closer to the top of the basin, you have a problem. It sneaks up on you.”
The changes that Mintz has endured and the knowledge she has gained are helping others as she begins her fifth year as president of the National Family Caregivers Association.
She acquired the role of caregiver almost 25 years ago. In 1974, after seven years of marriage, her husband was diagnosed with the chronic disease of the central nervous system.
The news sent her world into a tailspin.
“I had to come to terms with the fact that life wasn’t going to be what I had thought,” Mintz said. “Coming to that acceptance is a difficult process. It’s about redefining your life with the illness in it.”
She still recalls her conversation with the doctor at George Washington University Hospital. She was a 28-year-old graduate student with a 5-year-old daughter.
“There was a sense of disbelief, of `Oh, my God!’ ” Mintz said. “For him it was almost a relief. There was a diagnosis. I knew life would never be the same.”
And it never has been.
The disease slowly took its toll on Steven’s body. He went from a cane to crutches to a wheelchair. Everyday tasks such as bathing and dressing became challenges.
The changes were felt in other parts of their lives. Communication became more and more difficult, eventually leading to a kind of “emotional war,” Mintz said.
The result was a one-year separation, an 18-month truce and a two-year battle before it ended in reconciliation.
“The genders tend to communicate differently,” she said. “I wanted to reach out. He was more closed. We were grieving differently, separately.”
Mintz ended up at a counselor’s office, trying to deal with incomprehensible information about the future.
“I remember her saying to me, `You are so angry,’ ” Mintz said. “I wasn’t expressing it. It’s a typical female thing. We react to anger in a different way given our socialization. The feelings festered.”
As she looked for help, she found little support. A discussion during a weekend getaway led to change.
While sitting at a beach five years ago, Mintz and her friend Cindy Fowler, whose mother had Parkinson’s disease, discovered that they shared similar experiences as caregivers, including difficulty finding resources. They thought of the millions of other caregivers who also needed help. The conversation inspired a newsletter and the formation of the non-profit National Family Caregivers Association.
“It’s amazing that all of this rose out of a personal need,” Fowler said. “Suzanne has worked non-stop to make this happen. It has her devotion. We wouldn’t have gotten to this point without her.”
Until early last year, Mintz shared her time on the association with her job at an interior-design firm and with caring for her husband. Now that she has left her job, she has more time for the association, which has 3,000 members.
The group’s voice has grown louder in the last five years. Working with organizations on nights and weekends, Mintz and Fowler offered information, promoted the work caregivers do and suggested changes in public policy.
It is not a small job. Part of the struggle is getting caregivers to recognize who they are. The association defines caregivers as those “significantly impacted by a loved one’s disability or chronic illness.” Mintz estimated there are 25 million caregivers nationwide.
A 1994 survey of association members found that 82 percent are female, 75 percent are married and almost half work outside the home.
The survey was a start, but the group is looking for further documentation. Last spring, legislation was introduced into the House of Representatives and the Senate to require the Census Bureau to count family caregivers in Census 2000. But the legislation languished, and its future in the new Congress is uncertain.
Mintz said those figures would give caregivers recognition and show the role they play in the health-care system.
Mintz has dealt with two bouts of clinical depression since her husband’s diagnosis. The feelings of pain, frustration and isolation were so strong that she found it difficult to get out of bed each morning.
“Depression is very common among caregivers,” Mintz said. “Most of us are women, our lives are hard, and we can get depressed. But hardly anyone notices. Friends are sure to ask, `How’s John? How’s Mary?’ But they don’t ask about us. We’re invisible.”
The reaction from fellow caregivers provides her the strength to continue working and helps her ward off her “biggest fear,” a third bout of clinical depression.
“Her story touched me. It was my story,” said caregiver Evie Rosen, of Santa Rosa, Calif., who got to know Mintz after reading an association newsletter. “She really cares, and it makes a difference. When she gets an idea, she makes it happen. It’s exciting to watch.”
One gratifying moment for Mintz was a result of an article in the newsletter titled “What If I Die?” which examined the consequences for loved ones when their caregivers die.
One caregiver wrote to say that she and her husband had not thought about the problem until they read the newsletter. “They picked up and moved to be close to their daughter,” Mintz said. “It changed their lives.”
An e-mail also left a lasting impression. “A woman sent a message that said we made her proud to be a caregiver,” Mintz said. “It was a wonderful feeling. That’s why I do this.”
Five years after its birth, the association has become a representative of caregivers and has recruited such corporate partners as Procter & Gamble and Rubbermaid Health Care Products Inc. It recently added Dana Reeve, the wife of paralyzed actor Christopher Reeve, to its honorary board of directors.
The association “has grown to become a player,” Mintz said. “It’s reaching people. It’s recognized nationally. I feel gratified.”
Today, with her health and marriage back on track, Mintz helps others define their sense of reality.
“I feel like I’m on a mission,” she said. “I haven’t regretted a moment that I have given. It’s where my heart is. It’s a different kind of reality, but it’s my reality.”
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For more information about the National Family Caregivers Association, call 800-896-3650.
