- The Washington Times - Tuesday, November 21, 2000

Donald Ward knew something was wrong one day in 1995 when his wife, Eleanore, wouldn't get out of bed.

"I went up to check on her, and she was sitting on the edge of the bed counting money," he says. "I left her for a little bit, and when I went back later, she's back in bed and the money was all over the floor. At that point, I decided to do something."

So began a two-year odyssey of checkups, evaluations and assessments that ended with a fateful diagnosis that rang in Mr. Ward's ears: His wife was in the final stages of Alzheimer's disease.

Today, Mrs. Ward lives at the Washington Home in the District. Mr. Ward still lives in their house on MacArthur Boulevard.

"I'd like to get out of the house, but I don't want to leave the neighborhood, so that is where I am," he says simply.

But life isn't simple anymore for him and a growing number of older Americans whose spouses of many years no longer live at home because illness or frailty has forced them into a nursing home or similar facility.

"How am I living by myself?" he says, repeating a question posed to him. "Good question. I look at that bed every night." He fights back a tear or two.

"But that's OK."

'Loss is horrendous'

According to the Census Bureau, three quarters of a million married seniors (ages 64 and older) lived alone in 1998, although not all of them had spouses living in nursing homes.

Still, that leaves a large number of people who have faced what Suzanne Mintz, president of the National Family Caregivers Association (NFCA) in Kensington, calls the most agonizing decision of their lives.

"The decision to institutionalize is very, very difficult," Ms. Mintz says, "and it's made more difficult by the fact that nursing homes have this stigma about them. People will say I promised him or I promised her I would never put him or her in a nursing home. If circumstances arise that necessitate that, in addition to the fact this is difficult anyway, there is this tremendous guilt on top of it.

"We have demonized the need to get help, and that is so wrong. And yet, the older generation has this thought built in that the responsibility is theirs and theirs alone. If they ask for help, it means they're not living up to their responsibility. It's this American culture of independence."

Louise Myers, executive director of Iona Senior Services in the District, says seniors often need to meet with Iona's counselors because of the emotional trauma of separation.

"We do a lot of supportive counseling," Ms. Myers says. "There's a lot of depression in these situations that spouses are facing. They've spent 60 years or so of marriage, and the loss is horrendous."

'Just the way it is'

Marvin and Elaine Weinman of Kensington held off the inevitable decision as long as they could after Mrs. Weinman was diagnosed with multiple sclerosis about 20 years ago.

By 1988, about eight years after she was diagnosed, Mrs. Weinman was bedridden. She was 58. The Weinmans tried to cope as best they could, but after four years, Mr. Weinman says, "there just came a time when we just determined it was in her best interests and truly my best interests" to move his wife into the Manor Care Nursing Home in Wheaton, about a mile and a half from their home. Mrs. Weinman declined to be interviewed for this article.

"I don't want to say, 'Hey, it's a great deal, listen to this great deal I've got for you. I'm going to send you to a nursing home,' " Mr. Weinman says. "It came to a point where when a person is in that state, they have an inability to do what they want for themselves. You just want everything, and they're angry. She had very, very valid reasons for being frustrated, and that led to my frustration. It's just the way it is. You can't live comfortably in that [home] environment without getting into some emotional situations that are detrimental to both parties."

Mr. Weinman visits his wife every day from 11:30 a.m. to 2 p.m. and calls her every morning and night to check in. He has a 13-year-old handicapped-accessible van that he uses to take Mrs. Weinman out occasionally for shopping excursions or trips to the movie theater. He organized a big family party for her 70th birthday in August, and last November, they celebrated their 40th anniversary with a trip to Ocean City.

"I think [the key to] our survival really has been good friends," says Mr. Weinman, 68. "People go up there, and family … the personal involvement every day… . We go out on overnights twice a year. It's good to get away. [The van] is her window to the outside world."

Mr. Weinman retired from a 34-year career at IBM in 1991 but keeps himself occupied with various civic jobs such as serving on the Montgomery County Recreation Department Advisory Board and the Montgomery County Taxpayers League and the Maryland Taxpayers League. He also works one day a week in the Food and Drug Administration's Office of Consumer Affairs. He also swims and plays tennis regularly.

Frustrated and depressed

Don Duckett of Puyallup, Wash., tried for 4 1/2 years to take care of his wife, Agnes, after she was diagnosed with Pick's disease in 1996. Pick's disease is a form of dementia similar to Alzheimer's and usually is fatal.

"I took her to doctors at the University of Washington, and they all pretty much diagnosed the same disease," says Mr. Duckett, 69. "I had the opportunity in 1998 to take her to NIH, and they came up with the same diagnosis after four weeks of testing. I made up my mind that there might be nothing I was going to be able to do to help her, but I was still going to keep her at home and take care of her there. My children all said the same thing: 'Dad, we'll help you as much as we can.' "

Mr. Duckett enlisted the services of a local hospice for about 20 hours a month at the beginning. As Mrs. Duckett got worse and eventually lost the ability to speak, he started to need the hospice more and eventually was up to 20 hours a week.

He went to various support groups for caregivers in the home but found that he felt out of place because most of the caregivers in the groups were women.

"I had never been trained to do those things I now had to do, like doing housework, cooking," Mr. Duckett says.

He says he didn't realize the toll it was taking on him and how much he had been missing from the outside world until he attended a Fourth of July party with about 100 other people this past summer, many of whom had been friends with the Ducketts over the years. Mr. Duckett says one of his daughters was able to take care of his wife long enough for him to mingle and talk with old friends.

"I was coming back home after this was over, and it struck me like a dead weight," he says. "I got frustrated and depressed all over again. I cried for hours. That was one of the biggest factors that made me decide I really needed to get her into a nursing home."

Mr. Duckett says he wrestled with some guilt feelings over the decision, but the difference it has made in both of their lives reassures him.

"I feel better physically," he says. "She looks better physically. She is putting weight on. She had lost almost 100 pounds, but now she eats at the same time every day and gets snacks three or four times a day.

Pick's disease can take two to 10 years to run its course, but sufferers usually die within five to seven years of diagnosis, "so the better health the individual has, the longer they're going to last," he says.

Mr. Duckett is a state representative for the NFCA, which he says helps keep him busy. He says he has had three columns published in local papers, and the Seattle Times is interested in having him write on a volunteer basis.

"That's the big thing for me in dealing with all of this," he says. "As long as I keep myself busy, doing things like advocacy is extremely important, whether on a national basis or local level. This issue is very important and very personal, and it's an issue that's going to affect every person some day."

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