Helping Lighten the Load of Alzheimer’s Families

Olive Newcomer says that even though Alzheimer’s has stolen her husband’s mind, Lloyd Newcomer, 84, finds comfort in the care his wife of 60 years has given him.

“Lloyd knows I’m here for him,” said Olive Newcomer, 86, who lives in Costa Mesa with her husband, a former college professor.

Although she realizes that he will have to move to a nursing home eventually, she cares for him with the help of the staff at a day-care center she sends him to five days a week.

“As long as I have my days free while he’s in day care, I’m comfortable with the arrangement,” said Newcomer, a registered nurse. “In some ways, he’s like his old self. He’s always nice and pleasant and makes sure to say ‘Please’ and ‘Thank you.’ He’s not ready for a home.”

Deciding when to institutionalize a person with Alzheimer’s is but one of the challenges facing their loved ones. The mind-altering disease affects relationships in many ways.

“Alzheimer’s has a huge effect on a marriage,” said psychologist Cordula Dick-Muehlke, who is executive director of Adult Day Services of Orange County, which runs two adult day-care centers, including Harbor Area Adult Day Care and Day Health Care Center in Costa Mesa where Lloyd Newcomer goes.

“When a spouse has Alzheimer’s, the whole nature of the married relationship changes,” said Dick-Muehlke. “Whereas the relationship used to be mutual and giving, the unimpaired spouse becomes the care giver.

“In a sense, the marriage goes full circle. Whereas the couple started out as strangers who became lovers, the lovers eventually become strangers.”

The role of the care-giver spouse is a difficult one fraught with many changes, said Deborah Newquist, a social worker and gerontologist who is executive director of Senior Care Resources, a Newport Beach private practice in geriatric care management.

“In a sense, spouses are quasi-widows and widowers,” she said. “They’re still married, but they don’t have a partner in the same way anymore. It’s really a de-coupling process.”

As the dementia progresses, care givers often become more focused on the patient and don’t see friends or pursue their interests, said Dick-Muehlke.

“My experience over the years has been that care givers hold on as long as possible, until something happens to indicate they can no longer cope alone,” she said. “At that point, day-care is often a good transitional stage.”

Some days, Lloyd Newcomer is almost his old self. At other times, he doesn’t recognize his wife. His bad days are offset by what Olive Newcomer calls bright moments.

“Lloyd’s clothes are tight because he’s been eating a lot and gaining weight,” said Newcomer. “The other day as we sat down to wait for the bus, he said he felt like he was wearing a corset from the early 19th Century.”

Newcomer doesn’t try to hide Lloyd’s condition from others, and many experts feel this is the best course of action.

“People need to get Alzheimer’s out in the open,” said Dick-Muehlke. “When (former President) Reagan announced he had the disease, the general consensus in the field was positive. It’s so hard for many families to acknowledge this disease. His doing so really helped.”

Telling others also explains odd behavior, said Newquist. “There’s a point when Alzheimer’s can’t be hidden, and it’s obvious that something is wrong,” she said. “It’s best that people know the truth and not come to their own conclusions.”

When an Alzheimer’s sufferer is a parent and an adult child is the care giver, the situation has special problems, said Newquist.

“Role reversal occurs, and the child begins to parent the parent,” she said.

“As the disease progresses, competency issues arise and some children balk at impinging on the parent’s autonomy. Taking charge and control is hard for adult children and can cause guilt, tension and general distress,” she said.

Although his mother, Helen, who has Alzheimer’s, lives at Golden Creek Inn in Irvine down the street from him, John Hall, 57, says that taking care of her for the past five years affected his marriage.

“My wife and I don’t have as much freedom as we used to,” he said. “We cut down on traveling to be near my mother. When we do go somewhere, we have to leave our itinerary in case there is a problem.”

Hall, an outplacement counselor, is grateful that his wife, Nancy, has been understanding and caring. “We’ve never really had any significant arguments about my mother,” he said. “We both realize how really helpless she is.”

Once bright and capable, Hall’s mother occasionally confuses her son for someone else.

“I used to love debating politics with my mother, but now it’s almost impossible to have a simple conversation with her,” said Hall. “She gets terribly confused.”

Hall said he first noted his mother’s decline six years ago when he flew back to see her in Ohio, where she was living at the time.

“I remember sitting on the airplane and all of the sudden starting to cry,” he said. “I perceived that time as a watershed in our lives. I knew that something had to be done, and that things would never be the same between me and my mother.”

Today Hall is saddened by the sight of his mother.

“In a sense, she’s really an infant in an elderly woman’s body,” he said. “I hope that when she dies I won’t remember her this way. I hope to remember her as she truly was--an intelligent, articulate, caring, strong-willed woman.”

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Where Families Can Get Help

Adult Day Services of Orange County sponsors free care-giver support groups at the following locations throughout the county:

* Harbor Area Adult Day Care & Day Health Care Center, 661 W. Hamilton St., Building 800, Costa Mesa, first and third Thursdays, 1 to 3 p.m.

* Costa Mesa Senior Center, Upstairs Conference Room, 695 W. 19th St., Costa Mesa, fourth Monday, 10:30 a.m. to noon.

* Huntington Valley Adult Day Care Center, 18685 Santa Ynez, St., Fountain Valley, second and fourth Thursdays, 1 to 3 p.m.

* Huntington Landmark Sewing Room, 20880 Oakridge Lane, Huntington Beach, third Friday, 1:30 to 3 p.m.

For more information, contact the Alzheimer’s Assn. of Orange County at (714) 283-1111. More than 40 support groups meet on an ongoing basis at different times and places in Orange County.