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.
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.
Again, Dr. Jeanette Wendt:
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, Pima Council on Aging: 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.
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.
JEFFREY BROWN:Online, you can see how Alzheimer's has affected Mary Wyant's artwork. We have a multimedia slide show from the painter. And how do you recognize the early warning signs of Alzheimer's? We have more information on our Health page.