In her warm, bright kitchen, Flaminia Zeman serves her 94-year-old mother Lilly Senni a snack, much like her mother did for her a half-century ago.
"Go ahead, drink a little juice, Lilly," says Flaminia, of Wilmington, Vt. "Sometimes it helps to get her attention if you call her by her given name."
Lilly is among an estimated 4 million Americans who have Alzheimer's disease, a progressive brain disorder that gradually destroys a person's memory, ability to learn, reason, communicate and carry out daily activities.
The inevitability and duration of the disease—from three to 20 years—brings about a reversal of roles when family members shift from being cared for to providing the care. Caregivers say that reversal is both challenging and rewarding, and always an opportunity to return the gift of parental or spousal devotion with love, dignity and compassion.
Life in Three-Quarter Time
For Flaminia, 55, the signs that something was wrong with her mother began three years ago.
"I found lists of things in her room like the cat's name written 30 times because she couldn't remember it," she says. "If I go out on the deck, she doesn't know where I am. I leave her notes, but she can't read them anymore."
Then there are occasional moments of lightheartedness. "I got her settled in the bathroom once, and she came out with the sweetest smile on her face and her adult diaper on her head," Flaminia chuckles. The challenges of caring for someone with Alzheimer's demand creative solutions, she says. "If I can't get her to walk down the hall with me, I sing a waltz and we dance our way down."
Flaminia says full-time caregiving is more demanding than she ever dreamed. Her husband, Bob, steps in at the end of the day to put his mother-in-law to bed. "Sometimes she responds better to a male voice," she says, adding that she believes her husband¨Ìs tenderness with her mother brings the couple closer.
"Family is family, and you take care of each other," Flaminia says. "I can keep going because I feel I'm doing the right thing."
Along the way, she has found the caretaker role has enriched the relationship between the two women. "It's like she's living her life in reverse. Now she's the child and I'm caring for her."
Community resources are essential tools for people who care for loved ones with Alzheimer's, says Marie Doherty, a registered nurse, who with her family attend full-time to her mother, Phyllis Norton, 77.
"My sister and my mother-in-law help," says Marie, 50, of Berkley, Mich. "When I'm working, she goes to a center I found through Catholic Social Services," which keeps clients physically and mentally active with games, projects and outings.
"I've realized that there's no going back," she adds. "I grieve the loss of her a little bit each day."
To cope, Marie leans on the support of five friends, all nurses at Beaumont Hospital in Royal Oak, Mich., who are caregivers for family members, too. "They affirm for me that I'm doing everything I can, and that's as much as I can do," she says.
Because the incidence of Alzheimer's disease increases with age and Americans are living longer—the average age at death was 50 in the early 20th century; today it's 77 to 81—a growing number of people are caring for older family members with the disease. To fulfill that responsibility, caregivers must tend to their own health as well.
When she's tired or frustrated or worried, Marie combines her training as a nurse with her faith and deep bond with her mother. "I'm thankful I've been given the grace to do this," she says. "It's a journey my mother made with me when I was growing up and now I'm making it with her. It's giving back."
Challenges and Changes
"My wife's illness has changed me," says Philip G. Marquez, 75, of Midland, Texas. "I'm a better person, more patient. Now all the things that used to be important to me, they don't matter. I've had to learn to be flexible."
Flexible meant learning to cook, do laundry and keep house for the two of them when Betty, 78, his wife of 56 years, no longer remembered how to do it. It's meant not panicking when she disappeared from the house and turned up confused on a bus bench in the rain or in a town 20 miles away after driving on the wrong side of the interstate.
"I'd never heard about anything like this before," he says. "I had a lot to learn."
So did their four daughters and two sons, who are scattered with their own families across the country. They try to help, but it isn't easy for them, he says. Marquez turned to the Midland Area Agency on Aging for help, for information and, most importantly, for support.
"I improved the ways I took care of her, but last spring I realized I wasn't doing her justice. That's when I thought of putting her in a nursing home," Philip says softly. "I didn't want to do it. Every time she had one of my kids, she could have died, but I just finally saw she needed more care than I could give her. I realized it wasn't happening because of me, it was the disease."
With his wife safely in a nursing home, Philip says he sleeps soundly, knowing she can't slip out into the dark alone or fall. But the fact that she's now a 10-minute drive away doesn't diminish his commitment to the woman whom he married at age 19.
"When the priest said 'for better or worse' I didn't know what he was talking about. Now I do," he says. "I haven't missed a single day going to see her. I sit with her at most meals even though she doesn't know who I am. Some days I stay with her until 9 p.m.
"She was a good woman and wife. I¨Ìm not about to ignore her as long as I have the strength," he adds. "My life has changed completely, but I've never really lost her, she's just out of reach."
Advice for Caregivers
Caring for a loved one with Alzheimer¨Ìs disease is a demanding, full-time job. To make the most of your time and provide the best care:
Know your resources: Adult day care, in-home assistance, visiting nurses and Meals-on-Wheels are just some of the ways to ease the pressure of caregiving.
Communicate: Keep family, friends and your employer current on your care-giving responsibilities. Most people can empathize and will be tolerant of the demands that come with it.
Care for yourself: Stay healthy by eating well, exercising and getting plenty of rest. Take regular breaks by tapping into community services, such as adult day care or respite or in-home companion services.
Manage stress: Find time each day for yourself by talking to or e-mailing a friend, reading, watching a favorite movie, walking or meditating or praying.
Get help: Let family, friends and others know exactly how they can help. Make requests for help specific, such as: "Can you stay with Dad from 2 to 4 on Sunday?" or "Mom's medications are ready and we need milk, can you pick them up this afternoon?"
Accept change: Learn about the different stages of Alzheimer's so you can anticipate and prepare for them.
Plan ahead: Talk to an attorney about legal, financial and care issues. If possible and appropriate, involve the person with Alzheimer's and other family members.
Be realistic. Many of the behaviors that occur are beyond your control and the control of the person with the disease. Grieve losses and focus on the positive moments.
Take credit, not guilt. Know that you are doing your best. Your loved one needs you, and you are there. Be proud of what you are able to do.