With Alzheimer’s and other debilitating diseases afflicting more women, the men in their lives are stepping up.
Ed Mitchell knew that in the next 10 days, he needed to take his wife, who has Alzheimer’s disease, to music therapy, take his aging father to get a pedicure and take his grown son for kidney dialysis. He also needed to get to the grocery store, stop by the pharmacy, meet with the hospice nurse about his mother and attend a meeting in downtown Phoenix early one morning.
He would need help.
So the 63-year-old retired pastor unclipped his smartphone from the black leather case on his belt and sent a group text message to family and friends — eight in all — asking whether they could pitch in.
Almost instantly, his phone buzzed in response: His daughter could come by after work. Someone from church had time on Tuesday. His wife’s longtime friend was open Wednesday.
Ed tapped it all into the calendar on his phone.
Anyone who has cared for an ill or dying person knows that it is a daunting, relentless job that can leave caregivers physically and mentally exhausted. And while caregivers traditionally have been women, who are often thought to be more nurturing, more men are taking up the role.
Almost twice as many men now are taking care of someone with Alzheimer’s disease or dementia, up to almost 40 percent of caregivers from 19 percent just 15 years ago, according to two studies, one by the Alzheimer’s Association, the other by the National Alliance for Caregiving.
Experts say that is because more women older than 65 have the disease — 3.4 million, compared with 1.8 million men at last count.
Changes in the economy, and the layoffs and early retirements that followed, made more men available than used to be the norm. There were other factors, too: families scattered across the country, longer life expectancies and changing ideas about gender roles.
For Ed, it was far less complicated than that. After 42 years of marriage, he says simply, “I’m the best person to take care of her. I know her better than anyone else.”
Ed never questioned that he would be the one to take care of his wife.
“She took care of me for a lot of years,” he says, with a shrug.
It’s his turn.
But that doesn’t mean he cares for Frankie — his wife’s nickname, short for Lola Francis — in the same way she took care of him, or how his mother did when Ed was a boy. He handles it differently. Like a man.
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Ed’s alarm goes off at 6 a.m. He gets himself ready for the day and then wakes Frankie. He picks out her clothes and then gets breakfast: yogurt and granola, the same thing every day.
“I’m not real creative,” he acknowledges. Up until a few months ago, Frankie could help, washing fruit or pouring cereal. Now she sits in a chair and watches.
“She’s making me do it now for all the times she had to do it,” Ed says, with a laugh.
At 7 a.m, they are joined by Ed’s father, Bob, who is 86. He is making oatmeal and toast for his wife, Shirley, who’s 82 and bedridden. He takes her breakfast to her on a tray.
Shirley is in the late stages of Lewy body dementia, the second most-common progressive dementia after Alzheimer’s disease. She had been in a care facility for a short time, Ed says, but her family thought she would fare better at home.
“It was a family decision,” Ed says, with a shrug.
“Plus,” Ed says, patting his mother’s foot under the blanket, “she likes her roommates better here.”
Shirley smiles at him.
She and Bob have been married for 64 years. They share a large bedroom, his twin bed next to his wife’s hospital bed. Shirley watches the neighbors and the hummingbirds through a big window. Bob keeps her company, watching TV in his recliner.
Ed checks his watch. It is just after 9 a.m.; he is waiting for a hospice nurse to come by and check on his mother. He also has washed and folded two loads of laundry this morning.
He had always helped with the laundry: “When you have four kids, you do a lot of laundry. That was one of the few things I didn’t have to learn how to do.”
Which is good, because he had to learn plenty of other things.
“In my house, my wife did everything,” Ed says. And she made it look easy.
While Ed worked, Frankie took care of their children. She grocery shopped and kept the family calendar, juggling dentist appointments and kids’ activities. She got everyone out of the house on time in the mornings and to church every Sunday. When their youngest started high school, Frankie went back to work.
Like many men his age, Ed was in charge of mowing the lawn and maintaining the cars.
“When I took over the cooking, you could have probably counted on one hand how many times I had cooked, and now I am cooking for four people,” he says, and adds, with a chuckle, “unfortunately for them.”
Ed learned to fry eggs from his sister’s “Better Homes and Gardens New Cook Book” on the kitchen counter. He keeps Stouffer’s lasagna in the freezer.
“Everyone seems to like that.”
In the kitchen, he used to ask Frankie, “Where are the coffee filters?” and “How long should I heat this up in the microwave?” Now she doesn’t know.
That’s all right, Ed says. And that’s what he tells Frankie, again and again. It’s all right.
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His attitude underscores how men handle caregiving differently than women, says Jan Dougherty, director of family and community services at Banner Alzheimer’s Institute in Phoenix.
It’s all right because it has to be. It is not something Ed can change, a problem he can fix. So he busies himself with the daily challenges associated with caring for his wife, parents and son.
“For men, there’s a sense of ‘Just suck it up,’ and ‘Do what you have to do.’ ‘Be a man,’ and ‘This is the life you’ve been dealt — deal with it,’” Dougherty says.
Obviously, not all male caregivers — or female ones, for that matter — are the same. But the women Dougherty has worked with tend to deal with illness more emotionally; men have been taught by society to be strong and stoic. Particularly those who now are in their 60s and 70s.
“It’s not that they don’t feel it. They don’t allow themselves to feel it” — at least in public, Dougherty says. “They don’t allow themselves to express themselves as much as women do.”
Ed grins sheepishly.
“That’s true. If there’s a problem, let’s solve it. I don’t want to feel it or talk about how Ifeel about it. I want to do something about it.”
So they do what they know how to do: Solve the problems. Think strategically. Delegate responsibility.
“You just have to get through,” Ed says.
Someone has to be in charge, or nothing gets done. So, Ed says, “I’m in charge.”
Men typically launch a fact-finding mission as soon as their wives are diagnosed, Dougherty says. They want information, and none of it sugarcoated.
There’s a library at the Banner Alzheimer’s Institute for patients and their families, and Ed says the men he knows who are caring for their wives have read every book there.
“Every day, you have to have a plan,” Ed says.
He runs his errands like a raid. Frankie goes to an adult day-care program from 1 to 5 p.m. three days a week. While she’s there, Ed might take his dad to the doctor, swing by the grocery store, and check on his son, Davin, 31, who is awaiting a kidney transplant. Davin’s brother, Grant, 34, is his donor, which means he’ll also require care after the surgery.
“That works as long as everyone runs on time,” Ed says.
And when he can’t do it all himself, Ed asks for help, sending out one of those group text messages.
Dougherty says women tend to be more reluctant to admit they can’t do it all, or to put any of what they perceive as their own burden on anyone else.
But for all the tough talk, caregiving is no easier for men than for women, Dougherty says. She tells the men she works with, “You are an awesome husband,” or “You are an amazing son.”
And she always asks, “Can I give you a hug?” And that’s when even the toughest men sometimes cry.
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Not much hugging goes on in the monthly meeting of Men Who Care, a support group Ed founded two years ago at the Banner Alzheimer’s Institute in Phoenix. There is handshaking and some back patting, but mostly sound advice and understanding.
“We can’t just sit around and say, ‘It’s terrible,’ or ‘It’s sad,’” Ed says. Instead, they help each other find answers to the tough questions, even the one no one wants to ask: “How will I know when it is time to move my wife to a care facility?”
On this day, eight men sit holding plastic foam cups of hot black coffee. One man tucked a spiral notebook and the book “End of Life: Helping With Comfort and Care” under his chair.
It is 7:30 a.m. Most of the men are in their 60s and 70s and retired.
Part of being a caregiver — particularly for a man, it seems — is putting on a brave front for everyone else: the kids, grandkids and longtime friends. Here in this meeting, they can drop their guard a bit.
A little small talk, and then someone asks one man who had to move his wife into a care facility how he was doing.
The man sighs heavily. The other men nod knowingly. And then he talked. About how his wife could no longer walk or feed herself. How she didn’t know her last name anymore. That he could no longer lift her safely.
And then the other men ask questions — how he picked the place, what it was like and how she responded.
“I still think it was the right thing to do,” the man concludes, and again, the men nod in agreement.
Another man, new to the group, talks about how his wife seems overwhelmed by choices as simple as what to wear or whether she wants toast or cereal for breakfast.
“Since it is so frustrating, why do you give her choices?” asks the man sitting to the newcomer’s left.
“It’s a lifetime habit,” the newcomer says. “I’m so used to soliciting her opinion.”
After decades of sharing news of the day, talking about the kids and debating big decisions, like buying a car, and small ones, like what kind of ice cream to have for dessert, the conversation now is one-sided.
“Frankie and I have always been close,” Ed says. “We have always talked through everything. I want her to know everything. Now I’m realizing she can’t know everything. It’s too overwhelming.”
As her disease progressed, even asking what she would like for lunch could confuse her, so now he just tells her, “We’re having soup for lunch.” Outlining their plans for the day would make her anxious, so now he tells her what comes next.
The men are empathetic but frank. When the newcomer says his wife still drives, though only in proximity to their house, the men talk of accidents and close calls.
“The problem is, you don’t know when the brain is going to change again,” Ed says. “It can be a big change in a short period of time. It’s everybody’s call, but be aware.”
Throughout the conversation, among their concerns and advice, their love for their wives and the commitment they have made are evident.
One man says, “I said, ‘I do,’ ‘in sickness and in health,’ and I meant it.”
The meeting ends right at 9 a.m. The men need to get home to their wives.
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Ed was 9 when he spotted 10-year-old Frankie with strawberry-blond hair playing the piano at South Mountain View Baptist Church in Phoenix. He asked her out the first time in college and took her to the circus. Eight months later, in June 1971, they were married.
“Do you remember that, Frankie?” Ed asks.
She shakes her head and says softly, “I can’t remember.”
Ed picks up her hand, closing it in both of his. “That’s all right,” he tells her.
Ed and Frankie planned to grow old together. That’s still the plan, though things are different now.
There is a dead bolt on the front door to keep Frankie from wandering off and getting lost. She used to garden; now she wanders in the backyard, sometimes pulling weeds, sometimes grass.
Ed used to point out the difference to her, but now he just lets her pull up what she wants. It’s just a clump here, a clump there.
“It keeps her busy — and happy,” Ed says, watching Frankie.
Looking at Frankie, it doesn’t seem as if anything is wrong. She’s wearing neat black trousers, a black blouse with pink fuchsia stitching at the neck and black ballet flats. Their little dogs, Peanut and Brittle, follow Frankie back into the house.
“Vicious, aren’t they?” Frankie says, smiling.
Now that he looks back, Ed says Frankie started showing signs of the disease at age 52 — nothing dramatic, just a forgotten name or a place she was supposed to be. Her doctor told her that it was normal; it happens to everyone, Ed says. The next year, a different doctor told Frankie the same thing.
But then in 2005, when Frankie was 56, she was hospitalized with the flu. She seemed disoriented, so doctors ran a few tests and referred her to the Banner Alzheimer’s Institute. Doctors there finally said the words: Alzheimer’s disease.
Ed doesn’t talk much about how difficult it has been, or what he’s had to give up. He shrugs off things that are gone now — pillow talk, the house filled with the music of Frankie’s piano playing, her memories of their wedding day.
“It’s just a part of it, I guess,” Ed says. He can’t change it, or fix it.
“We always focus on what is lost. I try not to do that. I try to just be in the moment,” Ed says. Some moments are more difficult than others.
In April, Ed showed Frankie a picture of herself and their daughter, Bryn, on his cellphone. She studied it, and when he asked if she knew those people, Frankie smiled and shook her head.
Just hours before, when Ed picked her up from the day-care program, Frankie had been listening to music from the 1960s, correctly identifying every song and artist.
But she didn’t recognize her daughter — or herself — in a photograph.
“I wasn’t quite expecting that,” Ed says, studying the image on his cellphone himself. He takes a deep breath and looks up, smiling. He shrugs: “Ah, what can you do?”
It’s all right.
—-
Frankie doesn’t play the piano at church anymore, but she still sings in the choir. So while she’s at practice on Wednesdays, Ed uses the hour to sit with a cup of coffee somewhere.
He can’t remember the last movie he saw. His parents and Frankie go to bed early, so his evenings at home are quiet. Ed looks over his plan for the next day and tries to read before he falls asleep.
“I have a book I’ve been reading — about four pages at a time.”
He doesn’t play golf anymore, though most mornings he walks with Frankie along the canal that runs through the Ken McDonald Golf Course.
On this day, Ed pushes Frankie along in a wheelchair. Her back has been hurting, a muscle spasm of some sort, making it difficult for her to walk very far.
Ed points out six baby ducks swimming with their mother in the canal.
“Do you see the ducks?” he asks, pointing.
“Oh!” Frankie says. She looks pleased.
Ed stops to listen to a bird calling and then asks Frankie, “Do you hear that bird? He’s in that tree. See him?” He gently lifts her face in the right direction. “See it?”
Frankie smiles and nods. Ed isn’t sure whether she actually did. But when Ed turns the wheelchair around and heads back home, this time Frankie points out the ducks in the canal to him.
“I see them,” he tells her, smiling at her upturned face.
Ed Mitchell, 63, takes his wife Frankie Mitchell, 64, for a walk near their Tempe, Ariz. home on June 11. Frankie has early onset Alzheimer’s and is cared for by her husband.(Photo: Pat Shannahan, The Arizona Republic)
