Emotion Is Tie That Binds Young, Ill to Old, Able in Surrogate Family

I am driving home from UCLA with a woman I didn’t know existed a year ago and who today is my surrogate daughter and her children, my surrogate grandchildren. Jean and the girls have found a father, a grandfather to love and who loves them. Someone they can depend upon in emergencies and for those special family occasions. For me, I have gained a new family. They fill a gap I didn’t know existed.

From the diary of Lloyd Shelley, Dec. 31, 1987

Lloyd Shelley was not sure if he wanted an “emotional involvement” when he responded to a newspaper ad asking for volunteers for the Jewish Family Services Family Friends program. The 78-year-old Sepulveda resident, a retired phone company executive, was simply “looking for something to do.”

“I went into it absolutely blind,” Shelley said. But his relationship with Jean Ginzburg and her daughters has proved to be surprisingly rich.

“Lloyd is typical of many volunteers,” said program director Marilyn Rosen. “They were not sure they were looking, but once they find it, it’s just what they need in their lives.”

The Jewish Family Services program matches retired people older than 55 with disabled or chronically ill children to act as surrogate grandparents. Typically, volunteers read to the children, take them on outings or act as a confidant, someone to ease the tension in a stressed-out family.

Shelley’s “family” has more problems than most. Rachel Ginzburg, 16, and her sister Dorothy, 14, have been found to suffering from ataxia-telangiectasia, also called Louis-Bar syndrome, which has multiple sclerosis-like symptoms. They are confined to wheelchairs, have slurred speech and function well below their chronological ages. Jean Ginzburg, a single parent since her husband died four years ago, also suffers from Louis-Bar syndrome. She is legally blind and recently underwent exploratory surgery for a pancreatic growth and has had foot surgery.

Shelley remembers his first meeting with them, in April, 1987. “I kept searching for the next topic of conversation even while we were talking. I didn’t allow a lapse of more than half a minute before I was off and rolling again. I tried to talk to the girls. This was a failure, mostly because I could not understand them.”

Although he soon was able to understand Rachel and Dorothy--and learned that Olivia Newton-John tapes were a bigger hit than John Denver--Shelley realized his focus should be Jean, whose poor health and needy family left her with no outlets for relaxation or conversation. The Ginzburgs, who live in Arleta, have a live-in helper during the week, but Jean is on her own on weekends, and Shelley often stops by. “Most of my time is spent with their mother,” Shelley said. “She needs me most.”

It may be possible that a few threads of inhibition that entwine this woman are unraveling. At one point during the lunch, Jean removed her glasses. This was the first time I had seen her without smoked glasses, and, for the first time, I realized she is a beautiful woman. My immediate reaction was to tell her. I said, “With your glasses on, you are very attractive and without your glasses, you are beautiful.” She did not seem embarrassed and replied, “Yes, I have been told that before.”

From the diary of Lloyd Shelley, June 1987

Shelley has recorded his slow-growing relationship with Jean in a diary he keeps about his volunteer experiences.

He began by driving her to medical appointments. Soon he was taking her out for coffee and pie, enlisting his wife’s help to put on birthday parties for Rachel and Dorothy, and holding Jean’s hand as she was wheeled down the hall into surgery.

At first, he felt like little more than a glorified driver. But soon he realized that “just the fact that I’m here is important.”

With his children grown and his wife working on a degree at Cal State Northridge, Shelley has found a second family in the Ginzburgs. Now he stops by Rachel and Dorothy’s school occasionally to say hello and is welcomed by the teachers and staff as a close family friend. “Lloyd is a terrific man,” Jean Ginzburg said. “The girls just adore him.”

When it came time for bed, Rachel was a rag doll and had to be lifted onto her bed. Her eyes closed in sleep as soon as I kissed her goodnight.

Dorothy still walks like a guy who would never pass a (Breathalyzer) test. Tonight, it was I who secured the teddy bear under arm and got the first goodnight kiss.

Jean had had a bad time with Rachel before I arrived. Rachel had fallen between the wheelchair and the commode. It was only by sheer will power and the grace of God that she was able to get Rachel up.

Jean now realizes that it will only be a matter of time before Rachel will have to be placed in a home. It is Dorothy’s reaction to this tragedy that Jean worries about most.

From the diary of Lloyd Shelley, September, 1987

The Family Friends program at Jewish Family Services in Van Nuys is one of eight surrogate grandparent programs in the United States that are funded by the National Council for the Aging. “We’ve had three training classes so far, totaling 27 volunteers,” Rosen said.

Matching the right “grandparent” with the right “grandchild” is crucial. “Some are more comfortable with children who have a physical disability rather than a mental one, and vice versa,” said Rosen.

In addition to taking 20 hours of training before they are matched with a child, volunteers meet once a month with Jewish Family Services staff members for support and guidance. They bring up problems they have encountered with their child’s family and the emotional difficulties they face.

Paula Molino, 56, of Encino sees herself as more of an aunt than a grandmother to Gabriella Lacabe, who suffers from kidney disease. (“Gabriella herself told me that since I had a mother, my mother was the grandmother and that made me an aunt.”) Molino, a part-time real estate agent who has had to curtail her work schedule because of severe back problems, praises the program for doing as much for the retirees as for the children and their families.

“My own mother was driving me nuts. She’s 79. I needed something to get us both going in a different direction. I’ve introduced Gabriella to my mother and my daughter, and now they are both involved with her, too. Gabriella is somebody else for my mother to worry about.”

Gabriella, 15, was born in Argentina and has spent long periods on dialysis, thereby missing months of school. Her first kidney transplant, donated by her mother, was rejected after two years. She received a second transplant last October and her health has been improving steadily ever since.

“I just called the family cold and asked to come visit,” Molino said. “When I walked in, it was very comfortable. An instant match.”

Gabriella lives with her parents, a 3-year-old sister and a 16 year-old brother. Her 19-year-old sister attends UC Berkeley. Most Sundays, Molino picks up Gabriella at her Reseda home and spends the afternoon with her. “It’s helpful to the entire family to take Gabriella away,” Molino said.

At first, Molino did not know what to do with the teen-ager. “Before the transplant, she couldn’t really go to a restaurant because she was on such a restrictive diet. Now we go and she can have French fries and tea.”

Molino has taken Gabriella to see “La Bamba” and “Snow White” and to a picnic at a local park. But Molino soon realized that she did not have to entertain Gabriella every time. “The important part is being together. Sometimes she helps me bake a pie and straighten out a closet or just accompanies me to the car wash. I often have to remind myself that many of the things I take for granted, like the car wash, may be new and exciting to her.”

Although Molino has taken Gabriella into her life, she makes sure she doesn’t shower her with presents. “They warn us about purchases, not to do too much. That’s not the point of the program. I can hold back on that. What I can’t hold back is the love. And why should I? Women my age have a lot of unexpressed love to give.”

Families are referred to the Jewish Family Services program through the UCLA Medical Center or they are recruited through a speakers program at schools for the developmentally disabled. There is a waiting list of families who want grandparents.

“Sometimes a match doesn’t work, although we screen them very carefully,” Rosen said. “Some families only want baby-sitting and we weren’t able to assess that properly. And some personalities don’t gel. It’s often better if one is talkative, either the child or the grandparent. And some kids need grandparents who are more outgoing, more giving.”

Pairing an older adult with a child in poor health can pose an emotional risk on both sides. Once the relationship has been established, the death of either could be devastating. Rosen is aware of that risk. “Most of our volunteers are not that frail, even though they may be as old as 79,” she said. “We’re more worried about them throwing out their backs than dying.”

But Lloyd Shelley does not appear to be worried about either possibility.

As I walked back to my car, the question “why me?” crossed and recrossed my mind. This is another world. What am I doing here? Without any direction on my part I am becoming, for fleeting moments, part of this world. Miss Lightfoot (Rachel’s teacher) told me that on Monday all Rachel talked about was the walk we had taken on Sunday. This feedback plus a gut feeling gives me the idea that I am doing some good and my involvement is important.

From the diary of Lloyd Shelley, June 1987