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Published on: August 21, 2012
by Janice Lloyd for USA Today:
John Becklenberg says his wife, Mary Ann, still cooks their dinner, although her favorite recipes are simplified to one or two steps.
She also hasn’t relinquished tidying up the kitchen of their Dyer, Ind., home, but there’s more clattering of pots and pans than ever before.
She was diagnosed six years ago with Alzheimer’s disease, a brain-wasting illness that eventually robs people of their memories and personalities, and interferes with the simplest of tasks. John says his wife is in the early stages. Rather than taking charge, he and Mary Ann, both 68 and sweethearts for 42 years, discuss what she can do and how he can help.
Every morning, they have “coffee and calendar” time, when he “reviews” with her what their day will involve. More recently, he has had to go over the daily schedule several times a day. Her “you never told me that” is followed with his “let’s review,” he says — but it’s rather easy “when she’s so pretty,” he says.
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 Becklenberg 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 disease is fatal. The government announced a plan in May to find a cure by 2025 and to find ways to support caregivers. 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.”
Becklenberg 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.
“One man called and said he knew nothing about helping his wife put on her pantyhose, and she wasn’t happy with how he was doing it,” she says. “We coached him through it. But often we tell people to get help and delegate things they’re not good at doing.”
John Becklenberg admits some tasks require more patience. His wife likes to garden but also to oversee her investments, for instance, and “that’s a dance,” he says.
He also does all the chauffeuring, adding that his wife decided on her own to give up driving. “I think this is easier for women to do than men.”
Mary Ann Becklenberg is a little defensive about and frightened of the future. “She’s more confused in trying to figure out what day it is, month it is, even season,” her husband says. “Her whole sense of where she is is very seriously affected. I try to anticipate some of that.”
Sometimes she tells him, “I’m really having a hard day.” Then he will sit beside her “and mentally and physically give her a hug. After 42 years, we’ve had a lot of hugs.”
He is bracing for the future: “We know there’s a cloud on the horizon.”
The progression of the 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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