Helpless to Save Her Sister from Alzheimer's, An Anguished Actress Provides What Comfort She Can
updated 11/12/1990 AT 01:00 AM EST
•originally published 11/12/1990 AT 01:00 AM EST
Now a terrible disease has changed all that. Four years ago Mary Lou, then 57, was diagnosed with Alzheimer's, the degenerative brain disorder that begins with sporadic lapses of memory and progresses inexorably through physical and psychological decline to total dependency. In its late stages, it is sometimes marked by violent behavior. Alzheimer's victims generally do not live more than 10 years after the onset of the disease.
For Dickinson, 59, the steady advance of Mary Lou's illness has meant becoming her sister's protector. She oversees the nearly full-time care now required by Mary Lou, who has lost her ability to bathe, dress and feed herself, and early on she persuaded May Lou's children, Mark, 42, Diane, 38, and Craig, 35, to enroll in support groups for families of Alzheimer's victims. "Luckily we started planning when we did, "says Dickinson. "When the things we thought might happen did, we were prepared."
The fourth leading cause of death among U.S. adults, Alzheimer's has no known cause or cure. It afflicts an estimated 4 million Americans, including approximately 10 percent of those 65 and over. Nearly half of all people who live beyond 85 develop Alzheimer's. The burden on their families can be overwhelming. According to the Chicago-based Alzheimer's Association, home care may cost $20,000 a year, while nursing-home care is often nearly twice as expensive. None of these costs are covered by Medicare.
Nor does Alzheimer's research get more than token support from the government—an oversight Dickinson finds deplorable. Speaking before two congressional subcommittees last April, she urged legislators to step up funding and to treat Alzheimer's like other diseases. "It should be covered by insurance and government programs, "she said. At her home in Beverly Hills, which she shares with her daughter, Nikki, when the 24-year-old isn't away at college, Dickinson, who is divorced from composer Burt Bacharach, spoke with correspondent Kristina Johnson about the problems of caring for an Alzheimer's victim.
Between 1965 and 1980, I hardly saw Mary Lou. She had married in 1947 at age 18, was living in Burbank and had children right away. I had a husband and baby and was traveling and working. Something had to suffer, and I didn't see my friends or relatives as often. But by 1980, after having been separated from my husband for a few years, I had more time. Mary Lou was alone by then too. She had divorced in 1978, and her children were grown. For the first time in her life she had a job—issuing location permits to movie companies—which she loved. Once in a while she'd join us on the Police Woman set. If I'd been away on a picture, I'd spend time at her house. I liked her a lot. She was such a gentle, agreeable person.
It was about 1984 when Mary Lou started to show the signs of Alzheimer's. We were celebrating a friend's birthday, and Mary Lou got lost on the way to our friend's house. She arrived about 20 minutes late. I said, "I gave you the directions. How could you turn right when I said left?" You realize only later how harsh that must have sounded. Mary Lou didn't quite know what had happened. She just bluffed her way through it.
That same year she took a trip to New York City. While she was gone, I redid her kitchen and bathroom as a surprise. The kitchen went from an ugly green to a beautiful yellow with a new floor. Yet when Mary Lou arrived home, she didn't seem all that amazed. It flashed through my head that she might have shown more joy than that. Thinking back, you realize that it just didn't register.
That year too, work began to get difficult for her. "It's all just too much." she would say. I remember driving by her office. She happened to be walking nearby. As I watched her, she had a strange, vacant look on her face, as if she were lost.
Finally they had to let her go at work. She just couldn't keep up. She was so frustrated. I felt so sorry for her. But by then I'd made my own diagnosis of Alzheimer's. I'm a news junkie and I read a lot of the medical stories. Also Rita Hayworth had it at the time. Glenn Ford was very close to her and a friend of mine, and he would talk about her. So I was really aware of the disease.
In 1986 I told Mary Lou that I thought she might have Alzheimer's. I hope I didn't frighten her. It's worse to wonder, but still I'm not sure I did the right thing. Shortly afterward, she went with her son Mark to a doctor and, regrettably, her worst fear was confirmed. Afterward they came to my house. She was so despairing. She said, "I just want to have 10 more good years." And we lovingly assured her, "You will have it, Mary Lou."
The next three years were filled with little oddities such as forgetting her purse or the name of a person who had just telephoned. Putting on panty hose became a problem. So did hooking a bra and tying shoelaces, but it was manageable. In the house, the family and friends put out note cards with instructions like. "Turn off the stove, Mary Lou." Then, starting about three years ago, Dorothy Howe, her best friend, would go over and find spaghetti sauce all over the stove and a basic mess. Mary Lou couldn't control the cooking any longer, and we had to do it for her.
Her speech has deteriorated steadily. She'll use common expressions like "You bet" or "You're not kidding," but putting a new thought into words comes very slowly. It's so frustrating for her. She'll blurt out, "I'll get it, I'll get it. Damn this disease."
Naturally anyone with Alzheimer's is desperate to grab hold of something that might slow the deterioration. In 1988 she began taking the experimental drug THA, and she continues taking it, even though recent studies have concluded that it probably isn't effective. She thinks it's going to help her. If she didn't have that hope, it would be even worse for her.
By 1989 Mary Lou's decline hastened, and we realized she would eventually need full-time care. Fortunately for us—though it was terrible for her—her friend Dorothy had lost her job as an executive secretary several years before and was working part-time as my secretary. No one could be better for Mary Lou. Between Dorothy and two other helpers, Mary Lou is cared for on weekdays. And her children have her on the weekends. They've been terrific. They all contribute, financially and emotionally. They were hard to break in at first. I would have been too. Until you experience it firsthand, you can't imagine what it's like. It's brought us closer together, but it can pull a family apart too. "Are you doing enough? Why isn't he there? Where is she?" It's awful, and it doesn't end.
With my schedule, I don't see Mary Lou more than about once a week. I usually try for Saturdays or Sundays. Our sister Janet, who is a nurse and has six children, lives near San Diego, and we'll go visit her on occasion. You have to latch on to what Mary Lou likes and then try to keep her interested in that. She still enjoys going to movies and baseball games. I know she can't see the ball or the batter. In her mind, the transmission of the message from her eyes to her brain is a blur. But she enjoys the ambience, being there with me. It's all very momentary, but the moments are worthwhile.
Mary Lou has lost about 15 lbs. in the last year. I think she has started to reach the point where there's no enthusiasm, even for eating. Also, she has a hard time finding her fork, and when she does get it, she can't figure out how to maneuver the food to her mouth. Things like this make her very angry. She has even hit Dorothy on rare occasions. When she is depressed and sobbing, that's when her anguish is the hardest for all of us to deal with, because then you know what she's going through and that it's painful for her.
A few weeks ago she told Dorothy that she wanted to end her life. I'm amazed she hasn't said it more often, but she's probably felt it many times. I couldn't blame her for one second. It's a terrible agony. I would consider moving her to a home when all hope is gone and when she wouldn't know the difference. But not until then. It isn't just a matter of paying the bills. It's a matter of getting people who are kind and loving to care for her. That's not in the Yellow Pages.
The tragedy is that people abandon the Alzheimer's victim because it's a very difficult atmosphere to deal with. Many of Mary Lou's friends don't come by unless we solicit. She had wonderful boyfriends. She loved good times—the parties, the dancing, the restaurants. And here she is, with no one, the very opposite of what she always had and loved.
When I found out Mary Lou had Alzheimer's, I had myself examined for it. The doctors say I don't have signs of it now and that it's likely I won't ever have it. I have always had that feeling of being so lucky—and I always have been lucky. I've often looked at Mary Lou and thought, "There but for the grace of God go I." Early in Mary Lou's illness I told her that I would always take care of her and that she would never have to worry about being abandoned. I hope she remembers that in the tough times, because I can only imagine the horror of it all.