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T H E E VA N G E L I S T
April 14, 2011
SENIOR LIFESTYLES SUPPORT SYSTEM
Caregivers seek help from Catholic Charities BY ANGELA CAVE STA F F W R I T E R
She wakes at 6:15 a.m. to brush her husband’s false teeth before washing and dressing him. Her back hurts when she bends, so he lies on his back and lifts his feet to receive socks. She shaves him, mashes his six pills and prepares his breakfast, responding with patience to his tantrums and confusion. Annabelle and Maurice Weiner, both 79, have been married 59 years, the majority of which he treated her “like a queen.” Now, she tries to remind herself he’s not the same person he was before he developed Alzheimer’s disease about 10 years ago. “He doesn’t know who I am,” Mrs. Weiner told The Evangelist. “It’s a very insidious disease.” A progressive, irreversible neurological disorder, symptoms of Alzheimer’s include gradual memory loss, impaired judgment, disorientation, personality change and loss of language skills. Family caregivers in the Albany Diocese often search for help from counties, nonprofit groups and healthcare organizations with volunteer respite teams. For instance, Catholic Charities Caregivers Support Services supported about 400 area caregivers in 2009 with companions, home health aides, adult day care, assisted living services or nursing home respite care. If caregivers experience a health emergency, hospitals can page the organization 24 hours a day for respite care.
Respite threatened
Mrs. Weiner receives a small Catholic Charities grant that covers about 21 hours of day care per year for her husband. But funding for such grants declined this year, said Renee Goldsmith Benson, executive director of Caregivers Support Services. Mrs. Benson cited the loss of
New York State Senate and Assembly member items that had totaled close to $80,000 in previous years. Though private donors, county subcontracts and some other grants have remained stable, Catholic Charities has had to reduce its respite care grants. Meanwhile, demand for assistance continues to rise, making caregiving a public health concern, Mrs. Benson said. Compared to the general population, informal caregivers risk higher levels of depression and chronic conditions like heart disease, high blood pressure, diabetes and arthritis, according to a 2007 article in the American Journal of Public Health. Such caregivers usually neglect their own care, the article stated, and are more likely to lack health insurance coverage due to time out of the work force.
Invisible crisis
“It’s very invisible,” Mrs. Benson stated. “It’s part of our culture that people take care of their families.” To address needs while waiting for additional funding, Caregivers Support Services is collaborating with the state to start a program that would pay friends and neighbors of caregivers to provide respite. That will cost less than brokering to licensed agencies. Additionally, the Catholic Charities agency recently began training former caregivers to become volunteer mentors to current caregivers. That program will launch at the end of the year. Mrs. Weiner, who lives in Latham with her daughter and son-in-law and their children, already started training to become a mentor — though she admits she needs to be mentored, too.
Talk it out
“I needed somebody to talk to when I had bad moments,” she said. She’s worn out from the morning routine, from running
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errands while Mr. Weiner is at day care and from making dinner. At night, she keeps her husband busy with music, television and card games — anything to keep him from getting frustrated or threatening to leave the house. There’s not much spare time for herself: “I really feel like a part of my life has disappeared,” Mrs. Weiner remarked. “And I’m a social person.” Support groups sponsored by churches, towns, counties and Catholic Charities sometimes ease concerns about caregivers and their loved ones. Mrs. Weiner’s involvement in one such group gave her a network of fellow caregivers to call on when she needs to vent. Susan Rizzo, a caregiver who quit her job in Arizona and moved in with her parents in Albany in 2009, plans to attend a support group as soon as she finds time. “Sometimes you just have to talk and people just need to listen,” Ms. Rizzo said. Her mother, 89, was diagnosed with terminal cancer last fall; her father, 93, suffers from Alzheimer’s disease.
Charitable concern
Catholic Charities helped financially when Ms. Rizzo sought non-medical respite care for her father, enabling her to do Christmas shopping. Catholic Charities also directed her to other resources when she wanted to install a chair lift in the house. Ms. Rizzo has hired personal care aides after a long search for compatible individuals. She has also dealt with many questions: “Should we take away his [driver’s] license? What happens if he falls out of bed? What should I expect as the disease progresses?” The ultimate support group for Ms. Rizzo is her parish, St. Francis of Assisi in Albany, where she attends the Mass her mother previously attended. The pastoral care associate
THE WEINERS PLAY CARDS (ANGELA CAVE PHOTO) there, Sister Phyllis Mauger, CSJ, brings communion to Ms. Rizzo’s mother at home and sits with the caregiver in church. Ms. Rizzo takes comfort in parishioners’ kind words and
her faith in God. “I always pray for my parents and for me getting along with my brothers and sisters,” she said. “God guides me. People say I’m lucky, and I say, ‘It has nothing to do with luck.’”
CATHOLIC GROUPS
Volunteers pitch in BY ANGELA CAVE STA F F W R I T E R
Busy people usually find time for trips to the bank, doctor’s appointments or lunches with friends. But for many caregivers of loved ones with Alzheimer’s disease, that’s a struggle. About 230 Catholic volunteers in the Capital Region make caregivers’ lives easier by spending a few hours a week with patients. Parishes in the Albany Diocese sponsor 15 care teams. They’re trained by the Alzheimer’s Care Team Program at the Marjorie Doyle Rockwell Center in Cohoes to understand the science behind dementia, the behaviors associated with it, health privacy laws and infection control. Among other tips, they learn to: * Never argue with a patient; * validate the individual’s feelings and accept their reality; and * Tap into the person’s longterm memory to spark conversations. “Sometimes the temptation to correct and argue is there, and that’s not good,” noted Pat Haffner, coordinator of the care teams at St. Mary’s parish in Crescent and Corpus Christi in
Round Lake. Those groups currently help four families by staying at home with their loved ones or taking them out for food, shopping or music. Mrs. Haffner was inspired to join the team after she cared for her mother, who had the disease. “To have someone you love and know become an entirely different person is incredibly difficult,” Mrs. Haffner said. “It was something I felt I wanted to do because I learned a lot.” Now, she feels rewarded for helping others and often forges friendships with the patients. One spouse of a patient with Alzheimer’s at St. Thomas the Apostle parish in Delmar said he’s been able to take walks or find time for chores like car inspections when the volunteers take over. “It’s difficult to do certain things during the week,” said the man, who asked to remain anonymous. The program may expand into the North Country of the Diocese. Parish teams are still being added, said program manager Sandy Monahan. (For information, call 238-4164.) Two workshops at the diocesan Spring Enrichment gathering next month will provide education about the disease: “Ministering to People with Dementia or Alzheimer’s disease,” May 17, 10 a.m.; and “The Faces of Alzheimer’s,” May 18, 10 a.m. (For information, call 4536630.)