Whether it’s labeled Alzheimer’s, dementia, or forgetfulness, when an adult manifests cognitive difficulties and memory issues, both the individual and family members have challenges to face. As Shandaken residents Rachel and George (not their real names) cope with these problems, they are hoping a local support group can make their lives easier.
Rachel and Phoenicia Library director Liz Potter have organized an information session for a potential Memory Caregivers Group, on Friday, May 3, 5:30 p.m., at the Phoenicia Library. All interested area residents are welcome to attend the gathering, which will include a talk on effective communication strategies by Joan Carl of the Alzheimer’s Association Hudson Valley chapter.
“I thought this would never happen to me,” said Rachel, George’s wife and caregiver. “Now I have to deal with it.” George, 70, has been diagnosed with Alzheimer’s, which at this point is not severe enough for people on the street to notice. In a casual conversation, he’s as chatty and witty as ever, but when it comes to reasoning and decision-making, he seems paralyzed.
George used to be adept at carpentry. When Rachel asks him to put up a shelf, for instance, he doesn’t do it. When she asks him why, he says he doesn’t know how high it should be or exactly where it should go. “I get this heavy feeling,” she said. “If I gave him a nail and a mark on the wall, probably he could do it. At same time, he has a memory of all the fixing he used to do, so he doesn’t admit he can’t do it.”
He can still dress himself, brush his teeth, bathe, pick out clothes, but each step takes a long time. When he helps with chores around the house, Rachel has to walk him through each step, a frustrating and time-consuming process. She misses having his help to make decisions about finances, home, family. “He’s no longer there. He wants to be part of it, but he may not understand or he can’t give his opinion. I get agitated waiting for him to speak, and then I feel guilty that I’m not patient enough. I start to feel like a victim, thinking ‘Why do I have to do this?’ I have to remind myself this is not him, it’s the illness that’s doing it.”
George hasn’t done anything dangerous, like leaving the stove on, but Rachel notices smaller problems, such as items put away in the wrong place. She’s read books and watched videos that suggest worse might be on the way, but she’s not sure what to expect. “That’s why I want to talk to people in person,” she said. Staff at the Alzheimer’s Association office in Kingston have been helpful, but with responsibility for her husband, their teenage son, and her job, Rachel doesn’t have time to make repeated trips to Kingston. Besides, she wants to network with people who live close by so they can support each other, spend time together, and provide social opportunities for George. He occasionally gets rides to yoga classes and swimming, but his circle of acquaintances has greatly diminished.
Liz lives with her husband, their two children, and her mother, Virginia. Lately Virginia, who is in her 80s, has been showing signs of short-term memory loss. In some ways, Liz’s situation is different from Rachel’s. “I have my husband’s help,” said Liz. “And we chose to have her live with us so we could take care of her. But I go through guilt like Rachel does.”
When Virginia refuses to wear her hearing aid, she may ask Liz to repeat, several times, what she’s just said. Liz ends up yelling to make herself heard, and then Virginia is offended. “I tell her it’s because she’s deaf, and she says we’re enunciating poorly,” Liz laughingly explained. “If I didn’t handle it calmly and with humor, I feel guilt. Sometimes I wonder how much I can handle. I have my job, and she needs more of my time. I have some fear — where is it going to go?”
Rachel suspects there are many people in the area grappling with similar problems. “It’s not always obvious when someone has Alzheimer’s, and there’s a barrier to talking about it.” To test the waters, as she often does when considering a new program, Liz put a post on the library’s Facebook page to see if anyone wanted to come a caregivers group. Many community members who responded have experience living or working with people dealing with memory loss.
“That’s what I’m looking for,” said Rachel, “people who can talk from their experience. The group will be for caregivers, but eventually, I would also like to have a place for the patients themselves to feel they’re contributing to something. The group will form according to people’s needs.”
Now that many of her neighbors know about George’s diagnosis, Rachel is less afraid he will wander off and come to harm, but she still feels a need for contact with people who can relate directly to what she and her husband are experiencing. Liz is optimistic. “People in this community really help each other out,” she said. “I’ve seen that again and again.”
Anyone caring for someone with memory issues, or with an interest in the topic, is invited to attend the Memory Caregivers Group on Friday, May 3, 5:30 p.m., at the Phoenicia Library, 48 Main Street, Phoenicia.