Care-Givers Often Neglect Somebody: Themselves : A two-day retreat in Orange offers many a chance to stop watching after someone for a while and be kind to themselves.

Occasionally, she feels like the wife she used to be, but never for very long.

Since her husband suffered a stroke nine months ago, she has often had to be more like a mother or a nurse than a wife to him. And sometimes her sense of loss has been so great that she has prematurely felt the burden of one more role: widow.

Ellen Sommers, a 54-year-old Irvine resident, rarely allows herself to talk about the strain of caring for her 77-year-old husband, who has suffered memory loss that causes him to become disoriented and anxious if he’s left alone more than a few hours at a time.

But last week, among a group of people whom she knew would understand, Sommers was able to let down her guard and admit feeling panicked, isolated and trapped as she has faced her husband’s illness alone.

The occasion was a two-day retreat in Orange that offered people like Sommers a chance to stop being care-givers for a while and receive some care themselves.

If the steady flow of tears at the three-hour session led by gerontologist Bonnie Genevay was any indication, the opportunity was long overdue.

Genevay, a Seattle-based counselor and consultant, titled her talk “Who Am I Now?” because, she explained, care-givers are often so absorbed in the needs of their dependent loved ones that they completely lose touch with themselves.

“I want you to unlock yourself from the care-giver role and be a person,” she told her audience.

By the time they formed a large circle and put their arms around each other at the end of Genevay’s talk, they had filled their note pads with questions reminding them to pay more attention to their own needs while fulfilling their responsibilities as care-givers.

Genevay asked them: “Do you plan to be a care-giver for the rest of your life? Is this your identity? If not, when is the magic time when you’re going to become a separate entity from the person you care for and love, and how are you going to do that?”

Many of the people in Genevay’s audience are so busy providing round-the-clock care that they never find time to even ask such questions of themselves, much less answer them. They had a rare opportunity to reflect during the retreat organized by the Orange Caregiver Resource Center, a nonprofit organization based at St. Jude Hospital and Rehabilitation Center in Fullerton that provides information and referrals to family members and others who care for brain-impaired adults.

Most of the 50 care-givers at the retreat--titled “A Time to Care for Me” and held in the peaceful setting of the Center for Spiritual Development in Orange--were women over 60 whose husbands have had a stroke or suffer from a disease such as Alzheimer’s, Parkinson’s or senile dementia.

Genevay quickly established herself as one of them when she talked about the stress of caring for her mother, who had Alzheimer’s disease.

“I almost burned myself totally out,” she said, calling herself a “recovering care-giver.”

She urged those for whom care-giving has become a 24-hour job to “drop the mask” when people ask how they are and tell the truth. Instead of saying, “I’m fine,” admit, “I’m barely treading water” or “I’m feeling very helpless,” she advised.

Without that kind of honesty, care-givers risk becoming too exhausted to enjoy the rewards of giving.

“In so many families, the love goes down the tubes because there’s no energy left,” Genevay said. “A loving relationship is more important than any physical care giving we do.”

But some care-givers are unable to ask for relief because of their own guilt, perfectionism or need to be in control, she noted. A number of care-givers in the audience admitted they have turned away help, telling themselves, “No one can take care of him the way I can,” or “She doesn’t want anyone but me,” or “It’s easier to do it myself than to tell someone else how.”

But Genevay didn’t encounter any resistance when she challenged her audience to let go of such thoughts. When she passed the microphone around the room, Virginia Hempstead, a 74-year-old San Clemente resident whose husband has Alzheimer’s, said: “I’m beginning to see clearly that I must not use this situation to withdraw from life and from other people or I’ll drown with him.”

Opal Payne, whose husband has had Alzheimer’s for nine years, admitted that she couldn’t reach out to others until recently because she wasn’t able to accept his illness. For a long time, she said, she made sure that her husband was always meticulously dressed--as he used to be--because she wanted him to look normal.

“I finally accepted that he can’t be normal, and now I’m able to ask for help,” said the 74-year-old Irvine resident, noting that friends have provided relief by regularly cleaning her house.

Shirley, who asked not to be identified, said she recently arranged for her husband to spend four days a week at an adult day-care center.

“I had been doing 100 things at once--laundry, cleaning and paper work, paper work, paper work--24 hours a day,” she said.

Now she makes time for lunches and other outings with friends--something she had resisted because she and her husband, who has Parkinson’s disease, used to do all their socializing as a couple.

“It took me a long time to realize I had to build a life separately from our life together,” she said.

Some people become completely immersed in their care-giving role so they won’t have to deal with their emotions, Genevay observed. But, she cautioned, care-givers getting sick themselves--or even abusing the loved one for whom they’re caring--when they fail to find outlets for their own anger and grief.

Sometimes, the anger grows out of unresolved conflict. Genevay recalled a man named Walt who had been abused by his alcoholic mother when he was a child and ended up taking charge of her care when she was elderly and ill.

Whenever he touched her, it reminded him of being hit, so he placed the burden of meeting her daily needs on his wife. In the care-giver support group he had joined, Walt talked about his mother’s medical problems, never about the rage inside that made it impossible for him to be close to her.

He was running not only from his anger, Genevay said, but also “from the love, the reconciliation there might be” if he could deal with his feelings about the past.

“Underneath the surface, many of us have a lot of pain in our family history, and it comes home to roost when you become a care-giver,” she explained. “Walt couldn’t acknowledge his unresolved anger. And if you can’t express anger, you can’t express love.”

It’s important for care-givers not only to take care of unfinished business before their loved ones die so they can say “I’m sorry” and “I love you,” but also to start the grieving process.

“You can’t wait until your loved one is gone to do the grieving,” Genevay said.

Spouses must allow themselves to grieve over the loss of the dreams they shared with their mate--and the loss of touch and recognition from the person with whom they were most intimate, she said.

Working through grief frees care-givers to look toward the future with a sense not only of who they are, but who they can become, Genevay told her audience. She acknowledged that care-givers are bound to see sorrow when they look ahead. “But what about the joys and the potential?” she asked.

In spite of the heartache that goes with care-giving, there can also be self-discovery.

For example, Ellen Sommers said: “I’ve learned that I could handle a lot on my own. It’s given me confidence.”

And Genevay observed: “When we care for children, the satisfaction is they grow up and become independent. But when we care for someone older, most of the time, they will decline and die, and the satisfaction is that we are the ones who grow.”