Whenever Sarah Harris and her husband, Ernie, drove past a nursing home, he would say the same thing: That’s where you’re going to put me. That’s where I’m going to be sent.
“I would say, ‘No, I don’t think that’s going to happen,’ ” said Harris, of Fairfax, Va.
Her husband had been diagnosed with Alzheimer’s disease at 53. She was 10 years younger and believed she could care for him until the end.
“I knew that he did not like nursing homes,” she said. “His dad lived in a retirement community, and he really did not like facilities.”
His fears, and her assurances, mirror conversations that are playing out increasingly between husbands and wives, children and parents, and others as the population of older Americans swells. By 2050, the number of people 85 and older is projected to triple.
Promise you won’t put me away. It is hard to say no to that request. But it often is even harder to honor it.
For many, the idea of being sent to a facility implies abandonment. Older Americans remember the poorhouse , where the old and infirm were hidden away to die. But many younger people also are repelled by the idea.
There’s now a wider spectrum of facilities catering to different levels of need, but even the best ones can feel institutional. Daily life is often rigidly regulated, robbing residents of autonomy, and the familiar faces and spaces of a person’s life are gone.
Like many caregivers, Harris was concerned that being in an institution would hasten her husband’s decline. People in her position engage in a constant calculus: How long can you hold a job, take care of a declining loved one and stay healthy before something cracks? Where is the line between self-abnegation and self-preservation? How do you balance the best interests of the sick person and those of other family members?
A couple of generations ago, families were more likely to care for their parents at home — but people didn’t live as long. Thanks to modern medicine, even those with devastating illnesses such as Alzheimer’s can live many years past their diagnoses. But caring for them at home becomes increasingly difficult as cognition and self-care skills worsen. Safety, of the patients and of other family members, can also become a factor.
But even if the spouse or parent gets to the point of not being able to remember the promise — Promise you won’t put me away — the caregiver remembers.
“Oftentimes, people feel duty-bound to do what they said they would do,” said Ruth Drew, director of family and information services at the Alzheimer’s Association’s national office. “They have no idea what they’re signing up for. They haven’t thought about what it’s like to take care of someone who’s a foot taller than you and needs to be lifted to be bathed or put to bed.”
To Bill Thomas, a geriatrician who is working to change American attitudes about old age, the promise is a red herring. “It’s actually the only thing we know how to do because we don’t have the actual language to say what we’re really asking: ‘Promise me you’ll protect my dignity, promise you’ll protect my privacy, promise to make sure I don’t live in pain.’
“Ironically, the promise has led to significant amounts of abuse and neglect, because there’s a limit to what people can do.”
It wouldn’t be necessary, he points out, if people demanded more from the nation’s nursing homes.
“The nursing home industry has, ironically, benefited tremendously from the low expectations people have,” Thomas said. “They have successfully persuaded people that you’ve got no other choice — it’s got to be cold and sterile and rigid.”
Caregiving can take a severe financial toll, and studies have shown higher rates of depression, physical illnesses and mortality among family caregivers. And yet the impulse to keep a loved one at home is powerful.
Shari Sullivan, 55, swore to care for both her husband, who had Alzheimer’s, and her mother, who is 85 and lives with her.
“My vows were, ‘For richer or for poorer, in sickness and in health,’ ” said Sullivan, an accountant who lives in Woodbridge, Va. “The vows don’t stop just because he got sick.” Also, she believed that living apart from their young daughter would have accelerated his decline. “It would have just crushed him.”
With other family members helping, she was able to manage for five years. Then a fall sent her husband to the hospital; he died six weeks later from complications. Her mother still lives with her, with home health care covered by long-term care insurance.
“She said, ‘If I ever got Alzheimer’s, I want you to put me in a nursing home.’ And you know what? I still would not put her in a nursing home,” Sullivan said. “There’s no why or why not. . . . She may need me, but I need her more.”
However, Sullivan has forbidden her daughter from doing the same. “I don’t want caregiving to become her life.”
For Harris, a defining moment came three years after her husband’s diagnosis. She called home one day from her job as a preschool teacher to tell him his sandwich was in the refrigerator. He did not answer. The answering machine picked up, with her voice on it, confusing him. He later told her, “I could hear you, but I couldn’t find you.”
With two children at home, she realized she could no longer keep him there safely. But that didn’t make it any easier. Because it wasn’t just Ernie she’d made the promise to.
“I was making the promise to myself. I felt like I was letting myself down — I should be able to do this. It broke my heart. It was one of the worst days of my life, the day I put him in a nursing home.”
The feeling that one has failed to keep the promise adds to the stress of placing someone in a facility, said Gary Small, director of the Division of Geriatric Psychology at UCLA’s School of Medicine.
“It’s always best to not make promises you can’t keep or qualify,” he said. “You could say, ‘Look, Mom, I know you want to stay in your home, and we’re going to do whatever we can to keep you there, but . . . there could be things that you don’t anticipate.’”
Talking it through early while everyone is still healthy can help. So can doctors or support groups, which can affirm when a move to a facility would be in everyone’s best interest.
There are also those who won’t make the promise. A woman Drew worked with said her daughter would joke, Oh, Mama, don’t worry, I’ll find you a nice nursing home when the time comes. “Her daughter was kind of letting her know that was a boundary for her, that she wasn’t ready to stop her career and become a full-time caregiver.”
But such discussions can take ugly turns.
“I’ve even heard, ‘If you put me in a nursing home, you’ll be cut out of my will,’ ” said Leah Eskenazi, operations director at the Family Caregiver Alliance. “It becomes complicated when someone gets dementia because you can’t have a conversation with them.”
Others expressly reject making such a request.
Paul Hornback’s father and grandmother had had dementia, and he saw the toll caregiving can take. So when Hornback, a mechanical engineer for the Defense Department, was diagnosed with Alzheimer’s in 2009, he and his wife visited memory care facilities near their home in Hodgenville, Ky., until he found a couple that he liked.
“I wanted to see them first while I could still make a decision,” Hornback, 61, said. “Of course, I want to stay home as long as I can . . . but I’d want to leave my house and go to a unit if I am unsafe or harmful to other people.”
He has put together a box of items he would like to bring with him, including photographs of family and of his time in the military, and his Bible.
Reston, Va., resident Evelyn Brown, 64, and her husband Willie made a sort of reverse promise: After nearly 40 years of marriage, her husband told her that he would want to go to a facility if he became seriously ill. “Would you be strong enough to do that if it came down to I had some kind of disease and required that?” she recalled him asking.
“I said yes, I would be strong enough,” Brown said, and he made the same vow to her. A few years later, at 65, he was diagnosed with Alzheimer’s.
“The only thing he asked me to promise him was to not put him in a facility and walk away from him, and I have not done that,” she said. Two years after his diagnosis, she placed him in an assisted-living facility, where she visits him three to four times a w eek.
As agonizing as it was, Harris’s decision to put her husband in a facility helped her know he was safe and allowed her to take better care of her children. Her husband died 18 months later. She now runs a support group for family members of people with younger onset Alzheimer’s.
On the day they brought him to the assisted-living facility, “I left him, and he watched after us,” Harris said. “It was very sad.” And then, “he acclimated. Which was amazing.”