Pat Moffett, an energetic corporate executive, had spent years caring for his wife Carmen, who had younger-onset Alzheimer’s, when he received a stark message from her doctor, Gisele Wolf-Klein.
“You’re through,” Mr. Moffett remembers Dr. Wolf-Klein telling him. “As we’ve been watching Carmen, we’ve also been watching you. Your weight has dropped tremendously, your heartbeat is off , it’s racing all the time, you don’t look well, you’re losing your color, and all this is becoming very stressful on you.”
The doctor ordered Pat to take a three-week vacation while Carmen went into the hospital. He started sleeping again, he began to relax, and he started fixing up the house for Carmen’s return, though more troubles loomed in his future.
Pat’s story is part of an important shift in Alzheimer’s care, as more men become responsible for looking after relatives with this devastating condition. Social science researchers have only begun studying these male caregivers as a distinct group. Yet understanding these men and their experiences is essential, both for helping them stay healthy, and for getting them the resources they need for effective caregiving.
Jed Levine, Executive Vice President of the Alzheimer’s Association’s New York City Chapter, sees men as a vital emerging group in his Chapter’s mission of providing services and education. He’s concerned that not enough male caregivers are taking advantage of what the organization has to offer.
“What really dismays me is that only 20 percent of the callers to our helpline are men,” says Levine. “I know that there are more men out there who are providing care for a parent, for a spouse, or for another relative. I want them to know that help and support is out there for them.”
In the past 15 years, the share of male Alzheimer’s caregivers nationwide has doubled, from 19 percent to nearly 40 percent, according to two recent studies by the Alzheimer’s Association and the National Alliance for Caregiving. And that share will only increase as Alzheimer’s cases in the United States rise from about five million today to an estimated 15 million by 2050. With the disease afflicting women at a higher rate than men, along with less rigid gender roles in our society, men will continue shouldering even more of the caregiving load.
This shift brings up special concerns. In many ways, caring for a person with Alzheimer’s has little to do with one’s gender, with caregivers almost universally facing physical and emotional exhaustion, social isolation, and financial hardship. However, male caregivers often differ from women in how they approach the demands of the role, and in how they respond to its stresses.
As Levine’s experience with the helpline suggests and available research bears out, men are generally less likely to seek assistance, or will delay doing so, sometimes adopting a “go it alone” mentality. Men may compartmentalize caregiving, approaching it as a series of tasks, or as an extension of their job. Men also tend to hold in the emotions that arise during caregiving, or to express them in a more restrained way.
Sharon Shaw, who supervises group leaders for the Chapter and leads two groups herself, notices a difference in how men express the emotional effects of caregiving. Joining a group, says Shaw, “can be a learning process for men, who may be less accustomed to talking about their feelings.”
Yet that initial discomfort does not mean men can’t express themselves, Shaw stresses. One man’s being able to talk about his emotions often opens the floodgates for others, she has found. “There is a man in one of my groups who has had a lot of psychotherapy in his life,” she says. “He is very familiar with the language of feelings, and he’s been a leader in helping other men express themselves.”
What’s also clear is that these emotions — especially the slow sorrow of losing a loved one with Alzheimer’s — can build up and have a dramatic impact on male caregivers.
Pat Moffett experienced this, with his physical near-collapse closely followed by an emotional collapse. His wife Carmen had gone for what he had thought was a three-week hospital stay. He had begun to relax and fix up the house for her return. Then her doctor called to tell him Carmen should not come home and should instead enter permanent nursing care.
“That crushed me completely,” Moffett remembers. “A trap door had opened up and Carmen fell through it. It’s like somebody telling you your wife just died. It’s on that level. I had to go into therapy and was on anti-depressants for months.”
Yet even as more men face the stresses of long-term caregiving, they are also working to find meaning in the experience.
Ted Comet, who has been a caregiver for twelve years, takes inspiration from his wife Shoshana as he grapples with what he calls the “open wound” of her Alzheimer’s. Before she had this illness, she had turned her own pain as a Holocaust survivor toward helping others, first in work as an artist, then as a psychotherapist.
“She always made clear,” Comet says. “the biggest challenge everyone faces is how we deal with trauma. What’s the advice we usually get? Put it behind you and move on. But there’s something profounder [sic] to do, and that’s to use it, and transmute the trauma into creative action and energy.”
Today, Comet puts this lesson into practice by trying to help others, especially newcomers, in his support group. He’s also made a booklet of the tapestries Shoshanna wove, a DVD of her speeches about the holocaust that’s now being shown in multiple classrooms, and has started writing down the memories he has of her.
Pat Moffett also responded to his caregiving experience with creative action, writing the well-reviewed book Ice Cream in the Cupboard in order to “do something for Carmen,” who had always loved reading, as well as to increase awareness of younger-onset Alzheimer’s. Moffett is now working on the screenplay for the book, and continues working with a dinner group he helped start especially for younger-onset Alzheimer’s caregivers.
Pat Moffett and Ted Comet both show that male caregivers can find some solace, healing, and community by reaching out to others who share their experiences. However, men overall still represent only a fifth of callers to the New York City Alzheimer’s Association helpline, and that remains a troubling indicator.
“I hear it from men all the time: I wish I had known about you five years ago, so we wouldn’t have had to struggle without the support, without the information that your organization provides,” says Jed Levine. “My goal is to make more men aware that help is available.”
If you or someone you know are currently experiencing the physical, emotional, social, or financial stresses of caring for a person with Alzheimer’s, a wide range of help is available. Call 1-800-272-3900 to learn about the services that Alzheimer’s Association provides in the New York City area.
Shortly after this article went to print, Ted Comet's wife Shoshana passed away. The Chapter extends its deepest condolences.
Jamie Bennett is a freelance writer living in Brooklyn and a student in the Writing Division, Columbia University School of the Arts.