Love and Loss
02/27/1995 AT 01:00 AM EST
02/27/1995 AT 01:00 AM EST
Wealth and fame cannot protect you from the agony of watching the disintegration of a family member you love. For this story, five well-known personalities shared with PEOPLE their firsthand experiences of the pain of Alzheimer's. Shelley Fabares, 51, of the ABC sitcom Coach, lost her mother, Elsa, to the disease in 1992. That was the same year that West Virginia Sen. Jay Rockefeller's mother, Blanchette, died after living with Alzheimer's for most of a decade. Former all-star first baseman Keith Hernandez was playing for the St. Louis Cardinals in 1980 when his mother, Jacqueline, then 50, was diagnosed; she died nine years later. CBS sportscaster Tim Ryan, 55, learned in 1991 that his wife, Lee, then 51, had the disease; now she's in a nursing home. And comedian Mike Myers, 31, lost his father, Eric—the source of his sense of humor, Myers says—to Alzheimer's at the age of 69 in 1991. Here, in their own words, are the stories of their families' struggles.
Shelley Fabares: 'It was so strange'
Most people are close to their mothers, but my mom and I had a truly special bond. She had to act as my guardian on the set of The Donna Reed Show when I was working and my dad, James, was away a lot during the week, so I spent tremendous amounts of time with her. She was not very demonstrative with my older sister Smokey and me, but she showed her love by her actions. After she died, we found diaries, and the entries said, "Take Shelley to audition at 2, make costume for Smokey, drive Shelley to appointment at 4:30."
And she was very sharp mentally. Not long after I turned 18, she got a job as an assistant loan manager at a Los Angeles mortgage firm. Numbers and figures became her world. Her boss called her his brain trust.
The first clear sign of the disease came in 1984. That was the year I married Mike Farrell, and Mom, who was 73 at the time, refused to buy us a wedding gift. Her reason made no sense. It was so strange. She did other strange things too. One day, Smokey and I invited Mom to go to a movie. She said—just violently—"No! I won't go to that movie. That movie stars a short person. And I hate short people." I thought, "What? Who are you? I don't like you!" The company that Mom worked for noticed a change too. They kept lessening her responsibilities, thinking maybe they had been pushing her too hard.
Finally, Smokey and I decided to take Mom to the doctor. We wound up seeing neurologists, psychologists, specialists of many kinds. Mom went along, but she was terrified and angry at us. Still, we felt it was our duty to find out what was wrong. None of the doctors, though, could tell us.
In 1986 she was in the hospital for an unrelated illness. That's when I watched as the woman I knew as my mother vanished right before my eyes. I'll never forget the moment. Mom didn't like tea, and a hospital orderly had served it instead of the coffee she had requested. She picked up the cup and angrily threw it across the room. It was shocking. I had no idea who this woman was.
In 1989 the doctors told us that Mom had multi-infarct dementia [a deterioration of mental abilities caused by multiple strokes] and probable Alzheimer's. Their attitude was "goodbye and good luck." They weren't bad guys; they just didn't know what to tell us. I dialed information and asked if they had anything under Alzheimer's. When I called the Alzheimer's Association in Los Angeles, a woman answered and said, "What can I do to help you?" I was silent. Finally I said, "I have absolutely no idea."
But help of all kinds was what I needed. In 1988, Smokey and I had to take Mom's car keys away. She finally had to leave her job, and then we hired a 24-hour-a-day live-in caregiver. Soon she lost the ability to form coherent sentences. I would get messages on my answering machine in which she would hysterically say my old phone number over and over, and then her number. Then she would slam down the phone.
She was eventually down to a few phrases, some of them quite odd: "Here period here." "Queen period." "S-t period." "Shelley 70 long hair." "I don't know what I'm doing." "I don't know where I'm going." She lost even those one by one, until the last one left to her was, "Here period here." She would say it over and over, faster and faster—and that would be her total communication.
The pain for all of us got to be unbearable. She would walk up to us, open her mouth and scream—a bloodcurdling scream. Then she would hit her cheeks and point at her tongue. Then she would start to sob and fall into my arms. The memory will stay with me forever. I don't know a clearer expression of "I'm in here. Help me."
One day in 1990 we got a frantic call from Mom's caregiver. The woman had been out of the room for just a minute and returned to find Mom gone. We rushed over and found Mom in the middle of a busy street, yelling and flailing her arms at the people who were trying to help her.
At that point we had to place her in a nursing home. I didn't see my mother smile or show any sign of happiness for the last three years of her life. For one four-month period in 1991, all she did was sob. We would just sit there and hold her. I used to beg her, "If you can answer me, blink your eyes once." She never did.
Often in the last years of her life, I told her how much I admired her. I told her that I regretted that it had taken so long for me to look at her as a friend and not just my mom. But by then it was really a monologue, not a dialogue. Mom was 81 when she died in September of 1992. I tell myself that I did the best that I could.
Jay Rockefeller: 'She was regal'
By the time my mother, Blanchette, was diagnosed in 1986, the disease had begun to move very fast. She couldn't sit in one place for more than two minutes, even in her favorite chairs. She used to love to listen to Handel and Mozart, then all of a sudden she didn't have the patience for music. She would get up at 3 a.m., put on two dresses or two topcoats, go into the kitchen of her home in New York City and ask for breakfast. Then she'd do the same thing two hours later.
Before the onset of the disease, my mother was the queen of the city. She was 5'10" and absolutely beautiful. People always described her as regal. And she was. She ran the Museum of Modern Art for more than 12 years. She probably discovered as many young artists as anyone who ever lived in this country. She was a strong, creative, warm, life-embracing person. And she died, I think, with a sense of agony.
We had to hire teams of two specially trained Alzheimer's nurses—physically strong people who could deal with my mother's sporadically violent behavior. The cost was $50,000 a year per nurse. My family had the resources, but most people can't afford that kind of care.
Not long before she died, my mother was in and out of the hospital. I would stand at her bedside and watch her being treated. When the nurses tried to stick another tube down her throat, she would bite it to stop it from going down. She was asserting her humanity against being treated like page 330 of a medical textbook. She didn't want to die in the way she was dying. She knew that what was going on with her was wrong.
When I visited, she wouldn't look me in the eye. I'd lay my head in her lap, and she'd stroke my hair. But she wouldn't look at me. She did this because she felt demeaned by the disease. She felt she was a shell of a person.
My mother had a wonderful life. But she died a perfectly terrible death—one that a lot of other people will face. I'm not alone in my pain.
Keith Hernandez: A family in crisis
The effect this disease has on the people around the victim is devastating. In the last three years of my mother's life, my father, John, aged dramatically. In May of 1988, when I was playing for the New York Mets, I came home to San Francisco after not having been there since Christmas, and I was stunned. Dad had gone through a complete transformation; caring for Mom, who had been diagnosed with Alzheimer's in 1980, was taking its toll. He was suddenly gray and lined and wrinkled.
Dad was very loyal. He had been married to my mom for 30 years, and he didn't want to put her in a nursing home. Fortunately, I could pay for a private nurse. Still, Dad was overwhelmed. He was your typical John Wayne-type father who never showed a lot of emotion. But I remember talking to him on the phone, and he broke down crying. Dad had been a firefighter for 32 years, and he and Mom had always talked about traveling when he retired. Instead, Mom was in diapers, and he had to change her.
It was tough for my older brother Gary too. He had two young kids—one a toddler, the other an infant. But Dad still felt that Gary's wife, Marion, could do more to help with Mom. It got so nasty that Gary and Dad had a falling out and didn't talk to each other for a while. They made up eventually, after Mom died in 1989, but it was never the same between them.
Dad did get help from the Alzheimer's Association. He had always thought anyone who went to see a psychiatrist had to be, literally, crazy. But he joined a support group through the association and found out he wasn't alone. Dad didn't have much time left himself; he died, at 69, of cancer in 1991. But he did get strength and peace of mind from sharing his thoughts with other people who were struggling with Alzheimer's in their families.
Tim Ryan: A husband's anguish
I'll never forget the day in January of 1991 when the doctor sat me down and told me that my wife, Lee, had Alzheimer's. I was shocked. With someone who is 51 years old, the term Alzheimer's would just not come into your mind, especially with someone as bright and alive as Lee—a skier, a poet. I didn't know it at the time, but up to 5 percent of Alzheimer's victims contract the disease before age 65.
With her doctor's consent, I decided not to tell her at first. I was afraid she would have an emotional breakdown. I finally told her the truth 18 months later, when she had less rational thought. She asked, "What's wrong with me?" I answered, "You have Alzheimer's." It didn't really register, and soon she forgot that too.
I told our children—Kimberley, now 32, Kevin, 31, Jay, 29, and Brendan, 25—everything from the onset of the disease, and we began to have regular conference calls about what was happening and what they felt. I told them I needed their support, that I couldn't get through this by myself. And I also emphasized that their mother would want them to carry on and be as excited and happy about their lives as they could be.
I created a little mantra to help myself: "Patience, strength and wisdom." Later on, when things got really dark and scary, I would call upon my mantra to help myself stay strong.
My goal, after hearing the diagnosis, was to make sure that Lee would have the best care and life she could have. I decided in late summer of 1991 to sell our house in Larchmont, N.Y., and move us to a small, quiet community in Sun Valley, Idaho, where we'd had many happy family ski vacations. It was the right decision. We were able to take lots of walks in the woods with our dog and continue to share our love of nature. Medication helped Lee control the anxiety and terror she was feeling, and the community was kind, gentle and supportive. When Lee wandered off—a common symptom—the police saw to it that she was driven home. With the assistance of round-the-clock caregivers, it worked for almost three years.
By last spring, Lee's deterioration and emotional swings were very difficult for me to handle. Despite my able live-in help, when I returned from traveling for my job with CBS, she would be confused and upset. She was angry with me, but couldn't articulate it because she was losing her ability to speak in sentences. Finally I had to face the fact that the time had come when Lee would be better served in a facility. Fortunately I was able to locate an outstanding, small, specialized Alzheimer's residence—one of the few of
its kind in the country—called Villa Bella in Santa Barbara, Calif. [The cost, $50,000 a year, is not covered by insurance.] I don't feel guilty about putting her there, because I know that she is receiving better care than I would be able to provide her with.
I visit Lee monthly, having learned that too-frequent visits can be confusing for her. Sometimes meetings go well, sometimes they don't. She still recognizes me. That will go. Even though I say I am prepared for the day she won't, I know I'm not.
They call Alzheimer's the long goodbye. And the difficulty of the long goodbye is that you grieve from the moment you first hear about it, because it's incurable. You know that the person you love is going to be disappearing before your eyes. You don't get to say goodbye once; you say goodbye a lot of times. It's torture.
Mike Myers: Fun becomes fear
My dad, an encyclopedia salesman by trade, had an absurd sense of fatherhood. He'd wake us at any hour to watch Monty Python and Peter Sellers movies. Whenever he burped, he'd break into the song "Ah! Sweet Mystery of Life." Dad wouldn't even allow anyone in the house who wasn't funny. I'd ask if a friend could come over, and he'd say, "Nope, he's got no sense of humor."
In 1984 I was living in England, doing a comedy act. Around Christmas, I called home to Toronto, and everything about Dad seemed suddenly changed. He didn't even seem to know the month. By the next Christmas, it was clear that something was seriously wrong. Dad had gotten tickets to a Maple Leaf hockey game, and though he knew every square inch of Toronto, he insisted on taking the bus instead of driving. Then he forgot which stop to get off at. "I'm forgetting a lot of stuff," he told me. "And I'm scared."
Realizing how sick Dad was getting, I moved back to Toronto and joined Second City, the improvisational troupe. On Feb. 13,1987, my mom, Alice, called me at my apartment. She said, "We just came back from the doctor's, and all the tests indicate Alzheimer's." I felt like I'd been hit in the chest with a pile driver. I never used that phone again.
Dad would sometimes come to Second City shows, but he was starting to heckle the performers. He'd say things like, "Get off the stage. Michael's the only funny one." Dad had always had a gallows sense of humor, but this was the disease talking.
Things kept getting worse. One day he told my mom there was an old man living upstairs. She followed him up the stairs, and he said, "There he is." He was pointing in the mirror. In the spring of 1988, he poured himself a bath, but he put in only hot water. He scalded himself so badly he spent about a year in a hospital burn unit.
By Christmas, 1989, I was on Saturday Night Live, but I don't think Dad ever knew it. And he had loved Saturday Night Live. I remember in 1974 telling him that someday I'd be on that show. That was brutal. My career was taking off, but Dad was disintegrating. I did Wayne's World in August and September of 1991, and Dad died that November at age 69.
The hardest thing of all was that Dad never got to know my wife, Robin Ruzan. I'd met her in October 1987, but when I brought her home, Dad just kept asking her if she wanted a cup of tea. And I really missed him at our wedding on May 22, 1993. But my wedding band is my dad's Encyclopedia Britannica salesman-of-the-year ring. Wearing that ring keeps Dad close to me.