How do family's cope with Alzheimer's disease?

Theresa Jorgensen is usually one of the first to tell a family that it's dealing with Alzheimer's disease, and most families respond the same way.

"The first thing you see is they're overwhelmed," said Jorgensen, a registered nurse on the skilled care unit at St. Francis Memorial Health Center. "It's a pretty big thing to tell them. Then it goes all over the place."

It's said that Alzheimer's disease is harder on the families than on the patients, and from what a lot of health care professionals see, that's true. The situation is terribly stressful for a family, not to mention the patient, and different loved ones react in very different ways when confronted with an Alzheimer's or dementia diagnosis.

For most families, coping with the diagnosis means learning to care for a loved one, said Karen Noel, executive director of the Alzheimer's Association of the Great Plains.

In some cases, it also means protecting a loved one from what others think of the diagnosis.

"It's gotten a lot better, but there's still a stigma that being diagnosed with Alzheimer's means that person is weak," she said. "It's far from a mental illness; it's anything but. People don't hide when they have cancer, but unfortunately, we have people who want to hide Alzheimer's."

With 70 percent of Nebraska's Alzheimer's patients being cared for at home, coping means caring for a loved one. But it also means seeing a loved one go through a profound and distressful change. In many cases, that change can encompass everything from being accused of stealing by loved ones to staying awake all hours of the night to worrying about a relative leaving in the middle of the night. Exhaustion, depression and intense sadness can accompany caring for a loved one with Alzheimer's, Noel said.

Guilt also can crop up when families are considering moving an Alzheimer's sufferer to a facility. That guilt often dissipates in some ways when the person is actually placed in a facility, but sometimes that still doesn't make it any easier.

"Some families are too close or too far away to see anything objectively," Jorgensen said. "Now that it's more out in the open, families want to make a decision that will allow their loved one to live with dignity."

There are several ways loved ones can help themselves and each other deal with Alzheimer's. Respite care, which is time a caregiver takes away from the person he or she is caring for, is offered in several places around the area. Support groups are another big way for information and encouragement to be passed along. The Internet is another emerging tool in helping loved ones cope, Noel said.

The other dynamic involved in many cases is family members with different ideas on how care should be delivered, Jorgensen said. She's seen it happen when a family member living outside the area "swoops in" and disagrees with what others have decided. In cases like that, she said, Alzheimer's disease can rip a family apart.

The opposite happened to the Keeley family. When the family patriarch, Roger, was diagnosed, his wife, Ruthe, hid it for a while. Once it was out in the open, however, the family gathered, made decisions and have kept abreast of what's happening.

"We're closer now than ever," Mary Keeley-Herring, one of Roger's children, said. "We all love him, and we all care very much what happens to him."