Carol Harrison walks into her mother's nursing-home room, raises the blinds, lets in the morning light.
"Hey, Mom, hey, good morning." The daughter's voice is tender, as if waking a child.
She kisses her mother's cheek. Strokes her hair.
"Mom, hey, it's Carol Ann. It's Carol Ann. I'm here to see you."
Grace Ward, 90, is under a blanket, in a recliner, eyes closed. She has had Alzheimer's disease for 15 years. For the last five, she hasn't uttered a coherent sentence, or recognized her daughter.
"Sometimes I can get a little bit of a reaction if I put a straw up to her mouth," says Harrison.
She grabs a cup of water, puts the straw to her mother's lips.
"How are you? Would you like a drink?"
Lips search for the straw, find it, and start to sip.
"Oh, yes, you would. Hey, Mom, here comes a drink. . . . Good girl!"
Carol Harrison's grandmother was diagnosed with Alzheimer's at 75, and lasted eight years. Her aunt also was 75, and lived 13 years. Her mother was 75 when the confusion set in.
"I'm 60," Harrison says. "That means I'm going to plan on having a good quality of life for 15 more years. And at that point, honestly, that's enough for me. That's enough. Because I don't want this . . ." She stops. Tears well in her eyes. ". . . to ever fall on my kids."
In the last month, Harrison has been radicalized. She watched the movie Still Alice, in which Julianne Moore won the best-actress Academy Award playing a professor with early-onset Alzheimer's.
And she read The Inquirer's Feb. 19 story about Barbara Bitros, a former hospice nurse and educator who might have early-onset Alzheimer's and has vowed to end her life before she loses her sense of self.
"I don't want to say I'm obsessed with it," said Harrison, who lives in Lansdale, as did her mother, her aunt, and grandmother. "But I really want to learn as much information as I can."
Harrison would like to make a plan for her own death, should dementia set in. To her, it seems perfectly sane.
"I think there needs to be a whole paradigm shift," she says, "and I think my generation, the baby boomers, need to be the ones to do it."
By age 65, one in six women will have Alzheimer's, according to the Alzheimer's Association.
Last year, an estimated 5.2 million Americans had Alzheimer's, two-thirds of them women. As boomers age, that number is predicted to triple.
Caring for people with Alzheimer's last year cost society about $214 billion, including $150 billion in Medicare and Medicaid. The costs of the disease are projected at $1.2 trillion in 2050.
Grace Ward's life savings of about $150,000 went to her nursing-home care. Her daughter sold her mother's home; that, too, went to nursing-home care. Her pension and Social Security, $1,236 a month, go to nursing-home care. The remainder of her bill at Edgehill Nursing and Rehabilitation Center in Glenside is paid by Medicaid. The daily cost to Medicaid for a patient there, according to the Pennsylvania Department of Health, is $196, or $71,540 a year.
Five states, led by Oregon in 1996, have laws allowing terminally ill people to obtain a prescription for a lethal dose of medicine and ingest it themselves. Those laws, however, won't help anyone with Alzheimer's disease. They apply only to people who have a diagnosis of six months or less to live and, importantly, are mentally competent.
One possible solution: Refuse treatments that prolong life.
"Many of us most fear this woman's [Harrison's] imagined future and have some of her sentiments," says Joanne Lynn, director of the Center for Elder Care and Advanced Illness at Altarum Institute in Washington, a former hospice physician and a leading advocate for better end-of-life care.
"If she had me as her physician, and I knew she wanted to avoid this future, I'd be attentive to the risks she faces from other conditions. For example, if she had heart disease along with her dementia, we might let it run its course - not use pacemakers and stents. . . .
"Mercifully, most people sick enough to die have multiple opportunities to do so."
Harrison says the women in her family are very healthy - apart from Alzheimer's.
Ruth Drew, director of Family and Information Services for the Alzheimers Association, says that while her organization cannot support ending a life, "until someone has gone through it it [watching a loved one decline with Alzheimer's], they don't know what it feels like."
She adds: "When you have a disease like Alzheimer's, where there's no treatment and no cure, they're going to think: 'How do I want this to end up? What are my choices?' This will be an ongoing discussion and debate unless and until we find effective treatments."
Harrison retired last year as a teacher at North Penn High School and Montgomery County Community College. She intends to learn all she can about Alzheimer's and her options. She plans to see a neurologist in April and begin tests to determine if she is prone to get Alzheimer's.
"If I get the disease and reach the dreaded milestones in its journey that I never wanted to reach, I hope one day to have legal, medical, community assistance to get me out of here," she says. "And yes, in 2015 it seems a faraway concept. So, in the meantime, I will need to rely on trusted individuals to help me . . . much as I hate to involve anyone."
Harrison gently rubs her mother's neck, and leans in for a kiss.
Her mother's eyes suddenly open, a dazzling blue.
"Ha! Good morning," Harrison sings out. "Hey, you. It's Carol Ann."
Her mother giggles.
"Thank you," Harrison says. "How you doing?"
More giggling. Then a squawk. Loud, like a bird.
"She's lost her language," her daughter explains. "On some level, she knows it's somebody she knows, somebody she's comfortable with. I think that's the only communication she's got left."
Harrison keeps the monologue going, about loved ones long dead. When Ward could still speak, she often talked about her parents, as if they were still alive. Harrison says she learned years ago to be a "kind liar."
"I talked to Mom and Dad today," Harrison says. "And Martha. And Kitty. Martha said hello. . . ."
Harrison says she knows her mother would hate to live like this. "She was scared to death of it. She would say: 'Oh my God, please tell me if I ever get like them [her mother and sister]. Please don't let me get like this.' What was I going to do? Push her off a cliff?"
For many years, Harrison's mother and aunt were in the same nursing home, St. Mary Manor in Lansdale. One day, Harrison went to visit her mother, who was at the nursing home's hair salon. When she approached, she saw "the saddest sight." Seated side by side in wheelchairs were the two sisters, neither with any sense that the other was beside her.
Last year, after the Archdiocese of Philadelphia sold St. Mary Manor, she moved her mother to Edgehill.
She visits three times a week. On this day, after about an hour, it is time to go.
"Got a kiss? Kisses?"
"I'll see you tomorrow, OK?"
In the hallway, Harrison says, "I pray every night that I'm going to get the phone call that she's gone."