‘Promise you’ll never put me in a nursing home’

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,'” recalled Harris, of Fairfax, Va.

Her husband was 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 often is rigidly regulated, robbing residents of autonomy, and the familiar faces and spaces of a person's life are gone.

As with 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 ill person and those of other family members?

A couple 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, also can 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 in Chicago. '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.”

‘For richer or poorer'

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,'” Thomas said. '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.

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.”