Caring for her brother with Wernicke-Korsakoff syndrome…
Don has Wernicke-Korsakoff syndrome, a form of dementia caused by a lack of vitamin B1. In Don’s case, the vitamin deficiency and ultimate brain damage were a result of chronic alcohol abuse. He began drinking when he was 13 and didn’t stop until March 2012, when, at the age of 54, he was found unresponsive on the bathroom floor of his home. It is believed that Don was trapped in the bathroom for five days. He had a stroke, was suffering from starvation and his knuckles were bloody from repeatedly scraping the door to escape.
“The alcohol withdrawal for those five days made him worse. He had hallucinations,” His sister, Linda said. “I didn’t even recognize him. He looked like he was 100 years old. He couldn’t talk or feed himself. I don’t know why he fought so hard.”
Don spent a few weeks in the hospital, then eight months in a nursing home. There was nothing more the staff could do for him there, so Linda, 57, brought him to her Washington home in December 2012. She has been his sole caregiver ever since.
“I took him in not realizing how hard it was going to be,” Linda said. “It’s bad to watch him get worse and worse. He never knows what’s going on. He lives right in the moment. He can only remember for about 10 seconds.”
Don’s initial diagnosis was Wernicke encephalopathy, which damages the thalamus and hypothalamus in the lower parts of the brain. As the Wernicke symptoms subside, Korsakoff psychosis tends to develop – the result of permanent damage to areas of the brain involved with memory.
“He has no memory; he remembers little bits of things. He can’t form new memories,” Linda said.
He can’t follow simple instructions, either, like change your shoes and pants, in the short time it takes him to go from the living room to the bedroom.
Linda also can’t leave him alone, even if it’s just to run an errand or two. Once, she came home to discover that Don ate a whole pound of ham, helping himself to six sandwiches. Another time, he ate an entire box of Toaster Strudels that were in the freezer. He must have eaten them frozen, Linda said, because he doesn’t know how to use the microwave.
“His brain and his body aren’t working together,” Linda said. “Being a caregiver is frustrating, very frustrating. You lose yourself in this. Everything is about him. Things I want to do, I can’t.”
That’s why Linda calls Senior LIFE, Washington, a “godsend.” Even though Don spends only about five hours a day there, Linda uses her free time wisely, going grocery shopping, attending doctor’s appointments and running other errands. She only wishes Senior LIFE had evening and weekend hours, too.
A Senior LIFE bus transports Don to and from the North Franklin Township facility, where he can play Wii bowling, bingo and word puzzle boards. He also receives speech and physical therapy, and he socialises with a few people who knew him in high school, although, Linda said, “I don’t know how much he talks.”
“He was never a big talker to begin with; now, he doesn’t have anything to say. … Even when you look in his eyes, there’s no life there.”
Linda has taken Don to social gatherings, and she has tried to take him to the mall, but he doesn’t want to stay, almost immediately asking Linda, “Can I go now?”
“You can see his anxiety when he’s around a lot of people. It’s like sensory overload,” Linda said. “He gets nervous or agitated when there’s too much noise.”
Linda also has invited friends to the house, but Don wants none of that either, preferring to sit in his room.
During a recent interview, Don quickly excused himself shortly after becoming part of the conversation. He nodded a few times in response to a few questions, and when Linda said, “I’ve always been bossy, huh, Don?” he responded, “Yeah,” a slight grin separating his pursed lips, “just a little bit.” Then he left the room.
Linda even got a dog to keep Don company, but Don doesn’t pay it much attention.
“It’s hard to do anything to entertain him,” Linda said. “I talk to him, but he doesn’t know what I’m talking about.”
A few months ago, Linda started receiving in-home help from Senior LIFE with Don’s bedtime routine. He’s not combative with them, and he doesn’t get as angry as he does with Linda.
“It takes a lot off of me,” Linda said. “He’s a lot more settled in the evening. He seems to sleep better.”
And so does Linda.
“I will keep him here as long as I can. I just feel bad for him,” she said. “I don’t want to send him somewhere where he’s locked in a bedroom and they don’t do anything with him. I can’t turn my back. He’s my brother.”
Watch the video of Linda and Don –
by Denise Bachman