Area residents who act as caregivers or have loved ones suffering from dementia are finding that they aren't alone in their struggle after attending Alzheimer's Association Caregiver Support Groups.
Lois Bentley is a retired psychiatric nurse, and a Jamestown native who is acting as caretaker for her 65-year-old brother and her 97-year-old father.
According to Bentley, she attends the support groups because to her, being a caretaker means she has to take on a great amount of responsibility.
Lois Bentley’s brother and father are shown with their caregiver Felicia enjoying the view from their porch in Jamestown. In order to keep her brother from wandering, Bentley had to have a fence installed around the front yard.
P-J photo by Dusten Rader
P-J photo by Dusten Rader
"At this point, the caregiver group and Hospice are my support," Bentley said. "The average person doesn't know what to look for, and you end up going blindly down this path - you need somebody to talk to. I helps that I can share my experiences because being a caretaker is something you have to embrace, otherwise you'll be angry and get sick."
In addition to receiving support from the Alzheimer's Association and Hospice, Bentley's father spent some time with Chautauqua Adult Day Care, for which she is very thankful, she said.
Bentley's father suffers from dementia caused by stroke, which is called vascular dementia. The Alzheimer's Association characterizes the disease as a decline in thinking skills caused by conditions that block or reduce blood flow to the brain, depriving brain cells of vital oxygen and nutrients.
"He says sometimes, 'I can forget pretty good,'" Bentley said. "He has adjusted to the situation that he is in."
Bentley's brother, an example of early onset Alzheimer's, was diagnosed at 57. Before his diagnosis he was an engineer and a businessman. When Bentley moved in with her brother and father to act as caretaker they were both still driving, and wouldn't give up the car. She also had to have a fence installed to keep her brother from wandering off the lawn into the road.
"You can't just say my loved one has dementia because they are getting old - dementia is a symptom, not a diagnosis," Bentley said. "Before Hospice got involved my brother was having what I call 'unintentional bad behavior.' For example, he would walk up to the drapes, get a hold of it and pull them down."
Bentley's mother, who passed away in 2007 at the age of 88, suffered from dementia after receiving open heart surgery. At the time of her mother's diagnosis Bentley had too many other responsibilities and decided to leave the caregiver job to her father.
"What I think is really important is that everybody has to make the decision for themselves whether they are going to be a caretaker," Bentley said. "No one can make that decision for you, and there's no shame in whether you do or you don't. I couldn't take care of my mother because I figured it was my father's responsibility."
Now that Bentley has taken on the responsibility of her brother and father, issues have arisen between her and her sister. But, attending the support group has given her some insight into what is occurring between her and her sister, and has allowed her to diffuse any potential altercations.
According to Maggie Irwin, group facilitator, the goal of the support groups is to provide a comfortable environment where caregivers can talk to others who are in a similar situation.
"We talk about the problems caregivers may be having with their loved ones and talk about possible solutions," said Irwin. "Inevitably one member has already been through that phase with his or her loved one, and can give helpful information or advice. We talk about feelings we are having: guilt, anger, sadness and frustration. We often laugh, and some times we cry."
Irwin, who came to geriatric social work as a second career, is retired now, but she still finds time to act as a facilitator and a supportive resource.
"I really enjoy facilitating support groups because I can see the difference it makes in people's lives," Irwin said. "It is the group members who help make that difference in each other's lives. For example, I've seen a group member be in complete denial about his or her loved one's disease. That member worked through the denial with the group's help. And, then that same member became important in helping others in the group."
On average, the groups host between 8 and 10 people. But, there is generally a core group of individuals at each meeting to offer support, Irwin said.
"What I hear most from members is 'I'm not alone,' Irwin said. "I think they feel that they have some where to turn to learn how to handle situations, to vent their feelings, and to support others the same way they receive support."
Catherine Bockheim is a Wellsboro, Pa., resident whose father lives in Jamestown and acts as a caretaker for his wife who suffers from Alzheimer's. Bockheim attends the Alzheimer's Association Caregiver Support Group in Jamestown once a month with her father to offer support. The two have been attending the group together for nearly a year. According to Bockheim, the group has been particularly helpful because she knows he's getting support from people other than herself in a non-judgemental situation.
"What he gets out of it is that he realizes that he is not out there alone," Bockheim said. "It's not only that we're not alone though. But, there's a lot of actions and reactions that we see in my step-mom, and other people talk about their own personal experiences. So, we see that it's exactly what we're going through. We thought it was just her, but no, it's definitely the disease.
"With seeing other people who are in the caregiver situation, we may be able to know what to expect," Bockheim continued. "If we hadn't participated in this group we would have been more ignorant, and the more you know the easier it is - we've gleaned so much information out of it. The biggest thing that we have learned is that everybody says with Alzheimer's you lose your memory, but it is so much more than that."
There are two Alzheimer's Association Caregiver Support Groups in Jamestown. The meeting at Jamestown Area Medical Associates, 15 S. Main St. in Jamestown, occurs the second Tuesday of each month, and the next is set for Aug. 13 at 1 p.m. The meeting held at Fluvanna Community Church, 3363 Fluvanna Ave. Ext. in Jamestown, occurs the third Thursday of each month, and the next is set for Aug. 15 at 5:30 pm.
For more information call 483-5448 or visit www.alz.org/wny.
According to www.alz.org, Alzheimer's is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. Alzheimer's is not a normal part of aging, and the disease currently has no cure.
According to Irwin, one of the best resources for information about Alzheimer's and dementia is the Alzheimer's Association website.
"I would go to www.alz.org to find out where groups are held around the country, to learn more about the disease and to learn how we can help fight this disease," Irwin said.
The Alzheimer's Association will host a Memory Walk at Chautauqua Institution on Saturday, Sept. 7, at 10 a.m. Those who wish to get involved can raise money by getting sponsored to participate in the walk. For more information call 626-0600.