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Alzheimer’s support group offered in Berlin

August 17, 2018

People who are dealing with a loved one or taking care of someone who is suffering from Alzheimer’s disease or dementia know how alone it can make them feel.

Deborah Cook and Kathy Bell have started the Holy Trinity Alzheimer’s and Dementia Caregivers Group to offer help and support. The group meets at 6:30 p.m. the first Monday of every month at the Holy Trinity Lutheran Church, 525 Main St., Berlin, and is open to anyone interested in attending.

“We understand the frustration because we’ve been there. We weathered the storm,” Cook said. “We can help the people who are in the middle of the storm, focusing on one small spot and not seeing the whole picture.

“A lot of the issue is, you love your loved one, but it comes to when that person isn’t safe at home anymore. There is a certain guilt associated with it. Every family has to make its own decisions. We can help with the emotional aspect by giving suggestions and being supportive.”

“It’s so they aren’t feeling so alone in it,” Bell added. “Alzheimer’s does touch everybody in some way.”

The group meets every month unless a holiday falls on Monday, such as Labor Day or Memorial Day.

“It’s not just for the Lutheran church,” Cook said. “Anybody and everybody, any faith, non-faith, can come.”

Alzheimer’s disease causes people to lose the ability to remember, think and use good judgement and to have trouble taking care of themselves.

The local group started in October. Both women have firsthand experience with taking care of a loved one with dementia or Alzheimer’s.

“It’s historical for me,” Cook said. There are several people in her family who have suffered from dementia.

“The spark for me was when we lost an older sister-in-law to dementia,” she said. “At the memorial service there were many people there who weren’t family. My brother-in-law said they belonged to an Alzheimer’s caregiver support group sponsored by the Alzheimer’s organization. He told me with tears in his eyes, ‘I don’t know what I would have done without the group support.’ My sister-in-law was well-traveled, a really accomplished woman. It was hard to see her struggle.”

Cook said she talked to Bell about starting a group and immediately Bell said, “I’m in!”

The two women, while not professional counselors, have had some training dealing with Alzheimer’s disease and dementia and both have some experience. Cook is retired as a state parole board agent. Bell is a corrections counselor.

“We see who shows up and what are their needs,” Bell said. “Professional caregivers can come because they too are dealing with the issues of Alzheimer’s and dementia in their patients.”

“We know a lot of people out there need support,” Cook added. “We want to help them get what they need. They can use the other members of the group as a resource.”

Cook explains that there are different aspects to the effects of dementia, each creating a different reaction in the person and what they do. Sometimes, taking care of the person makes the caregiver feel good because they are providing love and comfort. Other times it can be overwhelming. Each day brings new challenges.

“There is a benefit to denial,” Cook said. “That’s when the person is not yet ready to deal with it. There has always been a stigma attached to the mind, brain and emotions. When an individual fesses up, it’s like a burden has been lifted.”

The caregiver has to understand how Alzheimer’s disease changes a person. They need to plan for the future, making their home safe, managing activities, taking care of themselves, and choosing a full-time care facility when the time comes. Sharing in the group might help an individual find others who have gone through the same experience and can help move them through it.

“We find often the case is the caregiver is not taking care of themselves,” Cook said. “The loneliness comes from facing that mountain themselves. We help them talk and unload about their issues. Guilt is a big trap. They say, ‘I can’t take care of myself because my family member is in need.’ The perspective of time is very important. You don’t really get closure until much later. Part of the grieving and resolution takes time. Some more than others. If you can do something now, do it.”

The meetings are confidential.

“What we say here stays here,” Cook said. “The group is confidential. It doesn’t matter who it is.”

Meadow View Nursing Center in Berlin has been very supportive of the program, they said.

“This gives the people who go to Meadow View a neutral place to meet and people can come in without having to explain why they’re here,” Cook said.

“We find it’s helpful to give the people dealing with Alzheimer’s and dementia a resource in addition to what we offer,” said Tammy Leister, administrator of Meadow View. “With this they can meet with other families who are also dealing with or have dealt with it and can help them through.”

The Alzheimer’s disease caregivers website is alz.org/PA. A helpline can be reached by calling 800-272-3900. The local group can be reached via email at holytrinitycsg@hotmail.com or by calling 814-267-5014 and leaving a message for Cook or Bell.

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