For The Dialog
Kathy Prioreschi knows the toll Alzheimer’s disease and other forms of dementia can take on the patient’s family members.
Each week she travels from her home in Rehoboth Beach to Fredericksburg, Va., to help cousins there care for their mother who has been diagnosed with Alzheimer’s.
“My cousins came to me and said, ‘Please help.’ They’re facing the awful reality that my aunt can no longer be alone, and they are trying to make sure she can stay in her home with 24-hour care for as long as it can last,” Prioreschi said.
As she helps with her aunt’s care, Prioreschi, a registered nurse, naturally has concerns for her own aging mother but also for the wider community of caregivers for Alzheimer’s and dementia patients.
Now, she has expanded her help beyond her family to those caregivers in the Rehoboth Beach-Lewes area through a new support group begun by St. Jude Church in Lewes. The first meeting in June drew six people; nine attended the second monthly meeting.
St. Jude formed its Alz-heimer’s/Dementia Caregivers Support Group because of parish demographics, according to Kathy Ebner, pastoral associate. “We have a large percentage of senior parishioners and several people have told me of a family member suffering from Alzheimer’s. It became clear that this was a need where we could help.”
Prioreschi, a parishioner in the parish health ministry, took on the project. She worked with Jamie McGill of the Delaware Valley Chapter, Alzheimer’s Association Caregiver Support Group, in setting up the new organization, one of 16 groups in Sussex County and 31 in Delaware.
About 26,000 Delawareans have Alzheimer’s or another form of dementia, said McGill, whose father died from Alzheimer’s in 1996. Nationwide, 5.4 million American have Alzheimer’s, comprising about 70 percent of all dementia patients.
McGill knows how being a primary caregiver affects a person, from watching her mother during the Alzheimer’s process.
“It’s hard to explain to someone who hasn’t seen it in action how devastating it can be,” she said.
“This is such a high-stress job,” being caregiver to a person with Alzheimer’s, she said. That stress is intensified in Sussex County, where “so many people have retired without any family.” That leaves a spouse as the only caregiver.
“It’s a lot like caring for a child. It’s difficult when you’re young, but when you’re 80 and have to care for your husband who is also 80, it just becomes way too much.”
That’s where St. Jude’s support group comes in. The meetings help caregivers know they are not “the only person in the world going through something like this,” McGill said. “They learn some of the ways other people cope.”
Prioreschi’s goal is to pass along information, and to encourage the caregivers to share their experiences and feelings.
“Folks feel like, ‘Oh my gosh, there is no hope,’” she said. “That can give a feeling of helplessness.”
Caregivers are encouraged to keep journals about how they feel about the situation. That leads to deep emotions sometimes coming out. “A lot of crying takes place,” Prioreschi said. “It’s okay to cry: Cry, cry, cry, don’t keep the feelings inside.”
“We’re focused on coping with the situation. The group does lend itself to hope, to making every day the best we can. Every day is a gift from God.”