This post from former PBS NewsHour senior correspondent Ray Suarez is part of the program's continuing coverage of long-term care in the United States. Visit Taking Care to see the complete series.
REBECCA WYANT: This is my mother, Mary Elizabeth Wyant. She is 74 years old and was diagnosed with Alzheimer's at the age of 65. She is a retired professional artist and a former professor at the University of Arizona.
My name is Rebecca Wyant. And I'm her youngest daughter and her primary caregiver and guardian.
RAY SUAREZ: It's been nine years since Mary Wyant was first diagnosed with Alzheimer's. In 2006, she moved in with her daughter, making Rebecca part of a growing population of Americans, now nearly 1 in 5 adults, who provide unpaid care for family members over the age of 50.
Rebecca says her mother used to be a fun-loving and vibrant artist who was always at the center of attention.
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REBECCA WYANT: Very creative, very outgoing, very gregarious, very much a social butterfly, just really liked to be around people. And she could take nothing and create something magnificent from that, so very smart. But more, I think, anything, it was just her energy and her social skills and her ability to engage with people, with anybody.
RAY SUAREZ: Today, that Mary still comes out from time to time, but often it's seen only in short spurts and can be followed by rapid mood swings, incoherent outbursts and blank stares. Mary exhibits all the symptoms of what the Alzheimer's Association has called the defining disease of baby boomers, with 10 million in that age group expected to develop this form of dementia in the coming years.
Jeanette Wendt is Mary's neurologist.
DR. JEANETTE WENDT: She has very severe language difficulties and has very severe memory problems and really has the inability to take care of herself in almost all aspects.
RAY SUAREZ: Moving to Tucson was a homecoming of sorts for Mary, who had raised her daughters there, but had been living in Central America with her second husband. When the marriage fell apart, Rebecca became Mary's legal guardian and her primary caregiver.
Rebecca, who is 48 years old and unmarried, is now on call from the moment Mary wakes up every morning, getting her mother out of bed and dressed, and then helping to brush her teeth, combing her hair and figuring out new strategies for medication. It can be stressful and difficult.
REBECCA WYANT: It's a 115-pound 2-year-old who is not potty-trained.
RAY SUAREZ: Even awkward at times in public.
REBECCA WYANT: People still when they talk to her speak in a very loud voice, because they think people with Alzheimer's can't hear. Or they speak very slowly. And I try and explain to them she's not understanding what you are saying, so you don't have to worry about that. I mean, just speak in your normal voice and just go with the flow.
But it's very uncomfortable for a lot of people, because they don't understand the disease. And the problem is, for every single person with Alzheimer's, it's totally different.
RAY SUAREZ: But Rebecca says people need to understand that her family's situation, all of it, is normal, and not without its special moments.
REBECCA WYANT: Every now and then, she will – I don't know what sparks in her mind, but she will just say – she will say, "Oh," and she will turn and she will look at me and she has something to say to me. You can just see it in her face, and then it's gone. But, for that moment, you just know, I know she's still in there. So when she manages to let a little bit of that out, it's wonderful.
RAY SUAREZ: Rebecca owns a self-serve dog wash and retail business, and brings Mary to work, where she will stay until the shop closes in the evening. It's round-the-clock care that Rebecca says she was willing to take on for one simple reason.
REBECCA WYANT: Nobody can take care of my mother the way I can. Nobody understands my mother the way I do. And someone can take care of her and provide sustenance, but no one can take care of my mother the way I can.
RAY SUAREZ: And the experiences of the Wyant family will likely be shared by millions in the coming decades. The number of Americans 65 and older is expected to more than double in the next 40 years, due in large part to aging baby boomers.
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The government estimates 70 percent of those over the age of 65 will need some form of long-term care. But a recent poll conducted by The Associated Press and the National Opinion Research Center found nearly two-thirds of Americans over the age of 40 have done little or no planning for their potential long-term care needs, such as setting aside money or talking with family members about how they want to be cared for. That survey was funded by the SCAN Foundation, which is a NewsHour underwriter.
JEANETTE WENDT: The vast majority have not thought about it and have not made plans. Even if they have an inkling or they even in their heart know that's what's going on, one, they don't want to address it with the person who has the problem.
RAY SUAREZ: And until it became clear Mary would need long-term care, the Wyants hadn't discussed the subject either.
REBECCA WYANT: There was really no long-term planning. It was just like, right now, what do we have to do? Right now, someone's got to be her guardian, because I have got to have the ability to make decisions for her on any level. And we didn't want to wait until it got so bad.
RAY SUAREZ: The issues around aging are easy to ignore and often difficult to talk about and address, but communities around the country, including Tucson, have long had federally funded programs that are supposed to help people like the Wyants.
In 1965, President Lyndon Johnson signed the Older Americans Act, which provided for the creation of a national network of agencies on aging to support community social services for older people. Tucson's Pima Council on Aging is one, with caregiver specialists like Suzy Bourque.
SUZY BOURQUE: Often, people will come in for a parent, but then they will think, OK, this tells me, I need to do my own powers of attorney. I need to think about how I'm going to pay for long-term care. So, I think most people, they need to think about the fact that whatever care they may develop a need for is going to be very costly.
RAY SUAREZ: Bourque also connects caregivers to experts and services, and Rebecca has contacted the agency several times with basic questions. But like many organizations dealing with budget cuts, this one has to do what it can with less. It's had to cut back on how many people it serves.
SUZY BOURQUE: The population of the, you know, over 60 in Tucson has greatly increased. So we're not meeting the need even as well as we did 20 years ago.
RAY SUAREZ: That means caregivers like Rebecca Wyant often must navigate a complicated and opaque health care system practically alone.
Rebecca had been paying for Mary's care with her own earnings and with her mother's assets. But when Mary's money was gone, she qualified for financial assistance through Arizona's Long Term Care program, but the enrollment process took several years. Now the state pays Rebecca for some of the time she spends looking after her mother, 14 hours each week, or roughly $500 dollars a month. It's a small amount, but money Rebecca says she is immensely grateful for.
REBECCA WYANT: I'm not being paid by someone else. I don't have a paycheck that I bring home every two weeks. I don't have benefits that I receive from an employer. If the business makes some money, that doesn't necessarily come to me. It goes back into the business, so any little bit helps.
RAY SUAREZ: But long-term care doesn't just exhaust financial resources. Dr. Wendt is concerned that, like many full-time caregivers, Rebecca may be putting her own health at risk.
JEANETTE WENDT: She's a great caregiver, but I think she is at great risk of burnout, because you never know what they are going to do in the middle of the night. You never know if they are going to get up and try to leave the house or turn the stove on and try to make something, or burn the house down. I mean, it's really always on edge. And so it's extremely stressful.
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RAY SUAREZ: Rebecca, as a small business owner, has been unable to find affordable health insurance that could help her manage the physical and emotional toll.
And she says she also doesn't have the money to put her mother into a long-term care facility she would be comfortable with. Even so, she's happy to still have Mary at home.
REBECCA WYANT: It's not always perfect, but she's my mother. And so that's the way you have to look at this disease. You can't dwell on what was or what might be. It's what it is today. And so she's alive. She's functioning. She's getting up. She's moving around. She has happy moments and not-so-happy moments, but it's not a sad situation.
RAY SUAREZ: Rebecca plans to take care of Mary for as long as she possibly can, even if she has to sell her business to do it.
On the PBS NewsHour website, you can view a multimedia slide show detailing how Alzheimer's has affected Mary Wyant's artwork.