John is taking care of his wife, Mary Ann. She has had Alzheimer's disease for six years.
She was diagnosed six years ago with Alzheimer's disease. John says his wife is in the early stages.
Women are still more likely to be caregivers, but the number of men caring for loved ones with Alzheimer's or dementia has soared from 19% to 40% in the past 15 years, according to the Alzheimer's Association. Among people over age 65 with the disease, about two-thirds are women (3.4 million), one-third men (1.8 million).
John says it's "sad" and "lonely on some levels" to be the caregiver — he prefers to call himself a companion. "Males try to fix stuff," he says. "We get out in front of ourselves a little bit too much. But by doing this instead, I ease her anxiety. I think it's helped her in the long run. It's also helped us both keep our integrity, and that's important in a relationship."
Alzheimer's caregivers frequently report experiencing high levels of stress compared with those helping loved ones with other chronic diseases.
"One of the problems with Alzheimer's is it can go on for such a long time," says Beth Kallmyer, spokeswoman for the Alzheimer's Association. "While everyone deals with it in their own way, male caregivers can sometimes find it harder to ask for help than women."
John says he feels fortunate his wife does not need help yet with many personal things: "She takes care of her own bathing and dresses herself. She likes to leave the house looking great."
As long as a wife with Alzheimer's can manage those "activities of daily living," the partner's stress is lower, says Gail Hunt, president of the National Alliance for Caregiving.
"Can you imagine the stress on a spouse who has to take care of feeding, toileting, bathing or showering someone who has a fear of the water, which happens to people later in the disease? Incontinence can also become a big issue. That's often when someone says they can't do it any longer," Hunt says.
Kallmyer says some men learn to do new things, cook meals, take care of cleaning the house, and find assistance in other areas.
The progression of Alzheimer's disease is "insidious," Hunt says. "Unlike other illnesses, like cancer, with Alzheimer's in the later stages, the family member doesn't know who you are. And that's really devastating to families."
The National Alliance for Caregiving and other groups have been trying to be sure that family caregiver support stays in the government's Alzheimer's plan.
"I never expected we'd be going through this in our 60s — maybe our 80s, but not at this time of our lives, John Becklenberg says. "We balanced each other pretty well and we've survived, but it's not a marriage of equals anymore. She'll admit that now."
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Graph and article - USA Today