Written by Mary Ellen Porrazzo Friday, 11 February 2011 00:00
A major initiative to respond to the growing needs and numbers of caregivers was unveiled Sunday at a conference co-sponsored by Christ Episcopal Church in Manhasset and the Junior League of Long Island.
Experts, educators and people presently caring for loved ones gathered at the Manhasset Public Library to hear keynote speaker Nassau County District Attorney Kathleen Rice and others discuss a situation that is facing more and more families. Information was also collected that will lead to the creation of a new Caregivers Support Group for Manhasset and non-Manhasset residents alike.
The Very Reverend David B. Lowry, pastor of Christ Episcopal Church spoke of the need to expand the support system.
“We are so happy,” he said, adding, “We had the chance to begin the discussion, but it won’t end today.”
Patricia Gallatin, a vestry member of Christ Episcopal Church and former executive director of the Long Island Alzheimer’s Foundation, said, “There is a need in the community with so many people caring for spouses and parents and then not getting out of the house.”
DA Rice addressed isolation and the need to reach out to family and friends.
“I am the seventh child in a family of four boys and six girls,” Rice said, noting she was “raised with a strong sense of family.” Her mother died in March 2006, 10 years after being diagnosed with dementia and Rice said, “I remember being grateful there were 10 of us to pitch in.”
Also in attendance was her sister, Christine Rice, who DA Rice said was the “primary caregiver” to her mother. “I was a back-up to my sister,” the DA said.
Christine Rice told the gathering, “One of the hardest things for me was realizing you don’t see them as people who need to be taken care of. How do I do this without hurting their feelings?”
She told the attentive audience about the time she reorganized her mother’s kitchen to make it easier for her (Christine). But the action had unintended consequences. It left her mother confused because her favorite things had been moved to an unfamiliar spot.
“Me trying to help her was scaring her,” she said in a quiet voice, as she recalled the difficult time that taught how important it was to “give them their dignity, give them respect.” She shared the title of a book that was especially helpful to her as she settled into her role as a caregiver, The 36-Hour Day, A Family Guide to Caring for People with Alzheimer Disease and Other Dementias and Memory Loss in Later Life by Nancy L. Mace and Peter V. Rabins.
“You want to give them as much comfort as you can,” Christine Rice said. She, DA Rice and others at the conference agreed laughter is invaluable. DA Rice said, “It is so important for caregivers to find humor. My sister did with amazing grace.”
“The senior population is the fastest growing population in the country,” according to DA Rice, who added, “People are living longer and longer.” As care giving is becoming more and more widespread, “The key,” she said, “is to educate yourself. Be aware. Be nosey.” She pointed to the crisis of elder abuse. Rice told of a case in 2006 involving a financial adviser who “ripped off his clients” by stealing their money instead of investing it.
“My policy,” she said, “is not to plea bargain.” The adviser was sentenced to prison. She also told of a home health aide who was not a member of the family, who stole a debit card from his 72-year-old employer. That aide pleaded guilty to grand larceny and he also was imprisoned.
“Never give financial control to a person who comes in from the outside,” Rice said, although she added, “Most of the people who come in are good loving people.”
Problems are not confined to outside caregivers. They can occur in families as well. Rice said those cases are especially challenging because it is difficult to get the patient to speak out against the relative. Substance abuse, she said, can lead to physical abuse of a parent. She told of a 70-year-old woman whose son was stealing from her. Even though his mother protected the son, he did receive an eight-month sentence. In cases involving family members, “We also try to facilitate treatment for the offender,” said Rice.
Rice suggested young people get long term care insurance that has a provision for compensation for family members.
The importance of caregivers “being willing to ask for and accept help” was stressed by Kathi Morse, LCSW, ACSW, who discussed the research she has conducted involving caregiver stress and ways to deal with it. Among the signs of stress, she cited, were feeling overwhelmed or tired, being easily irritated and often feeling sad.
“Don’t expect perfection,” Morse said. “Nobody is perfect. Set reasonable goals. Stay in touch,” she said, “with family and friends. Stay physically active. Get enough sleep.”
Support groups, Morse said, are extremely helpful by “encouraging the building of trust.”
“You sit in a support group and listen to other people’s stories,” Morse said, noting one also receives perspective “that can be very valuable.”
Tori Cohen, LCSW, director of In Home Respite Program, Long Island Alzheimer Foundation, who leads several support groups, said it is a nurturing experience that affords the opportunity to listen to other people’s stories. Several people familiar with the process said, “No matter what the situation is someone has gone through it.” Another person said the group provided her with friends to call at any time. Another said, “They could not have done it alone.”
At the registration desk, outside the art-filled community room, which also doubles as a gallery, was a basket filled with small heart shaped objects – a gift, courtesy the Junior League of Long Island. The bright red foam rubber items seemed a puzzle to the untrained eye. But conference attendee Louise Fribush, a longtime office manager for Port Washington physical therapist Zelik Ziegelbaum, explained the foam rubber hearts are called squeezes that you hold tightly in your hand, squeeze, then release and squeeze again. They are especially useful, she said, for people with arthritis, or people who have suffered strokes, or people facing stressful situations as caregivers sometimes do.
Reverend David Lowry smiled as he reflected, “Caregiving can be remarkably rewarding as well as remarkably stressful.” He spoke of the loss of people-to-people contact in this Internet Age and the need to reconnect as a community. The questions, the comments, the stories, the shared information and the concern that filled the afternoon made it clear that steps were being taken to address an important community need.
For more information, call Christ Episcopal Church’s Cathy Hoffman at 627-2184 or visit www.NasssauDA.org for questions about elder abuse.