Support groups allow caregivers to 'help self'
Angela Barner was looking for direction when she walked into the cafeteria of Golden Living Center in Waynesburg.
She didn't know what to expect, but she did know she wanted to feel as if she weren't alone. That's why she reached out to a support group.
Barner's mother, Nancy Fell, 67, was recently diagnosed with Alzheimer's disease. Prior to her own diagnosis, Fell, of the western part of Greene County, cared for her mother-in-law for several years before she died from the same disease.
While Barner is aware of Alzheimer's devastating course, she wasn't familiar with the overwhelming task of caring for a loved one with the disease.
“There have been a lot of tears,” she said. “A lot of sleepless nights. I can't seem to turn my mind off.”
Once her mother was diagnosed, Barner, also of western Greene County, said she moved her husband and three young daughters into her mother's 900-square-foot home so she could provide around-the-clock the care. The change has been extremely difficult.
“How do I make sure (my children) have a life without interrupting my mother's schedule?” Barner asked Golden Center support group leader Ilene Richezza.
“You need a good support system,” Richezza replied.
Individual support systems vary. For some, it's friends and family. For others, it consists of strangers who are experiencing similar struggles. With roughly 70 support groups across 13 counties, the Alzheimer's Association does its best to make sure the needs of loved ones, caregivers and those living with Alzheimer's are met in Western Pennsylvania.
But the task is challenging. Suzanne Weessies, a family service coordinator with the Alzheimer's Association, said support groups can be difficult to maintain. Location and attendance tend to determine the longevity of a group.
In Washington County, residents can reach out to two support groups affiliated with the Alzheimer's Association: at Presbyterian SeniorCare and First Christian Church, both in Washington. The Presbyterian SeniorCare group meets at 10 a.m. on the second Wednesday of the month; the First Christian Church group meets at 6 p.m. every third Wednesday. In Greene County, residents can visit Golden Living Center at 7 p.m. on the first Tuesday of the month.
Weessies said the majority of the Alzheimer's support groups can be found in Allegheny County. Specialized support groups, such as those focusing on the newly diagnosed, can also be found there.
“It really fluctuates outside of Allegheny County,” Weessies said. “Those counties have a small population and less long-term care facilities.”
She reminds those looking for a support group but can't find what they need in Washington or Greene counties that plenty of groups are “just eight to 10 miles away.”
And while Weessies said she would like to see more support groups organized, round-the-clock help lines and telephone and online support groups also exist. The help line can be reached at 800-272-3900. Online support groups can be found at the Alzheimer's Association website, www.alz.org.
Richezza has been running the support group at Golden Living Center for several years. As the Alzheimer's care director, Richezza said support groups provide a “sense of relief” for those who attend.
“We still have people whose loved ones have passed long ago who come,” she said.
While some people come to talk through their issues, others come to listen. “They get ideas,” she said.
Richezza said the group also allows family members and caregivers to know “they aren't alone in the battle.”
“A lot of times, caregivers pass before the person they are caring for because it's so exhausting and stressful,” she said.
To optimize their time together, Richezza said she provides group members with information to their questions and concerns, helps locate resources and brings in guest speakers. While she's happy to do it, Richezza said the work can be difficult. “You feel like you can't do anything to help,” she said.
At Presbyterian SeniorCare, facilitator Rena Tatka uses webinars, bag lunches and other components to relay information to her attendees. Tatka said even the smallest amount of information is helpful. “It will help you cope better,” she said.
Tatka has been running the group for several years. And while she's established a routine, Tatka said it's not easy to sit and listen to what she hears. She acknowledges that it is a “big step” to reach out.
“It's a huge step to make that phone call and say, 'Do you have a support group?' It's scary.”
Although attendance fluctuates, Tatka said she does her best to make sure everyone's needs are met.
As with every new member, Tatka explained the difference between dementia and Alzheimer's to Linda Dyson. Dyson, of Washington, recently started caring for her brother, Don Dyson, who has been diagnosed with Wernicke-Korsakoff syndrome. The mental disorder is associated with chronic alcohol abuse and is characterized by impaired memory.
Dyson said her brother can no longer function on his own. She removed him from a nursing home and brought him to live with her.
“I didn't know it was going to be so hard,” she said. “I thought I could do this on my own, but I can't,” she said. “I need people to talk to. I need people to help out.”
Barner has had similar feelings. She sobbed when she talked about the disease's inevitable end, and the possibility that she may have the same fate.
“I don't want my kids to have to see me that way,” she said.
But she's grateful for the group.
“It allows me to help myself,” Barner said. “It's a break, and it allows me to get more knowledge to help (my mom).”
The aforementioned support groups are affiliated with the Alzheimer's Association. To contact the group at Presbyterian SeniorCare, call Rena Tatka at 724-223-5745; First Christian Church, call 724-222-1510 and ask for Diane Lindley, and Golden Living Center, Ilene Richezza, 724-852-2020.