What Alzheimer's lectures
When 6:30-8 p.m. "Strategies for Holidays & Quality Time Together" Oct. 25; "Approaches to Support Memory Challenges" Nov. 29
Where Balfour Cherrywood Village, 282 McCaslin Blvd., Louisville
Info RSVP to assure a space: 303-604-2700
After Dee Kehl's mother died, she began to notice changes in the behavior of her father, James.
"We thought some of the confusion and inability to follow through might have just been his grief," Kehl says.
But the problems worsened: "He would forget that we were coming," Kehl says. "He would lose his phone. He would write checks and not remember he had to put a street address (on the envelope.) His eating habits changed. He just wanted sweets."
James was diagnosed with Alzheimer's in 2007, and shortly thereafter Kehl and her husband attended a series of lectures on Alzheimer's at Balfour Cherrywood Village, where James went to live in 2009 after he was no longer able to live on his own.
Kehl says the lecture, "Companions on the Journey," by Balfour Cherrywood Village Executive Director Megan Carnarius was immensely helpful.
"It's learning how to deal with (your loved one's) behaviors," she says.
Those can include asking the same question over and over, for example.
"They get stuck and can't get out of that cycle," Kehl says. "You can distract them on to something else. I credit Megan with helping to make me aware of that, to change my own behavior and not have that frustration."
Balfour will present a lecture, "Strategies for the Holidays & Quality Time Together" on Oct. 25 and "Approaches to Support Memory Challenges" on Nov. 29.
Kehl plans to attend both lectures.
"The holidays are heartbreaking," Kehl says. "My mother was just a huge holiday person. We were always all together."
The first year her father was in Balfour, they took him to Nebraska to her sister's house for Thanksgiving. The trip was very hard on him, and the large gathering was overstimulating and confusing. At Christmas, Kehl hosted a large family group at her home in Louisville. That, too was not a great experience. He didn't remember some of the people and he couldn't eat when he wanted to eat and in the way he wanted to eat.
Since then, the family has attended holiday celebrations at Balfour, which are generally not held on the actual holiday. The celebration on familiar turf allows James to be comfortable in his environment and enjoy himself with his family, while they also have a separate celebration without him.
"It's about letting go of guilt," Kehl says, and letting go of expectations. "It wasn't about our needs. That's a big learn."
'Companions on the Journey'
While there are different ways of classifying the stages of Alzheimer's, Carnarius says the most effective way she has found is to divide the disease into four stages based on human development. In essence, a person with Alzheimer's loses function and types of learning in the reverse order of which he acquired it. Thus, in the first stage, the person loses adult learning, which includes what's called executive functioning -- being able to plan and meet adult responsibilities for managing a job and household and make decisions based on events.
Short-term memory, which helps a person regulate and structure themselves in time and allows them to perform tasks, is lost. Being a companion in the journey of the first stage means taking care of things that must be done, but also figuring out things the person can do that give him pleasure. Carnarius says family members must match their expectation to where the person is.
"If you had someone physically disabled in a wheelchair, you wouldn't take them to the mountain and say, 'Go up,'" she says.
The second stage, which is the loss of adolescent learning, tends to be more emotional, Carnarius says.
"People lose their filters, their impulse control," she says. "They are more impulsive and have a shorter attention span. There's a restlessness and an inability to focus on a task."
She says family should modify activities and keep matching moods. A person who loved to read but is no longer able may take comfort in carrying books with him. A person who had a job with a certain uniform may want to wear the jacket or hat.
"We look at how do we preserve those elements as people progress," Carnarius says. "How do we work with them instead of against them."
Often in this stage, as in adolescence, the person is resentful and rebellious. Expecting that and working with it is the best approach. She cites as an example a person who refuses to change her clothes. A person who has a rapport could start doing laundry and get her involved and then say, "Oh, I notice you have a spot on your blouse. You always like to look so nice. Would you like me to wash it for you?"
She says many conflicts can be avoided in such a way, although medication is sometimes necessary if the person is extremely paranoid or angry.
"It's a fine line sometimes, but if a person is hurting people and hurting himself, he needs something to help him calm down," she says.
The next stage is the loss of childhood learning. Words are difficult to find. Any concept of time is lost, and transitions are difficult. As the stage progresses, the person may stop using utensils to eat and have difficulty remembering to go to the bathroom before the need is urgent, and also may not remember where the bathroom is.
People in this stage are helped to enjoy simple pleasure, petting an animal, sitting in the sunshine.
"We want to help them feel secure," Carnarius says. "Cognitively, they may not be able to partcipate, but how do we help people feel really loved."
The last stage, the loss of infant learning, is one many Alzheimer's patients don't reach, because they die of other illnesses first. For those who enter the stage, however, they begin to lose the ability to walk or sit. Often they lose weight, because they don't remember how to swallow. Death eventually comes.
Kehl says understanding the stages of Alzheimer's has helped her support her father.
Recently, he has forgotten about his 54-year marriage to her mother. He also began sleeping his clothes, refusing to put on pajamas and to shave in the mornings. She couldn't understand these changes until she and her sister got to talking about his childhood living on a farm.
"When he was a young kid, he didn't have pajamas. He slept in an unheated attic in his clothes," she says. "He sleeps in his clothes. He gets up and splashes cold water on his face. He doesn't have to shave. He's back with his parents on the farm."