Families learn to live with Alzheimer's
By Scott Hilyard
Copley News Service

When Kody Kanaga hit a home run over the fence in a middle school baseball game, his mother phoned her mother, Kody's grandmother, with the exciting news.

"She was so thrilled, she wanted to do something for Kody," said the boy's mother, Milissa Kanaga of Metamora, Ill.

What Ferne Rohman, the grandmother, did was scour the house for items to give as gifts. She found some, placed them in a box, wrapped it and, at the first opportunity, presented the package to Kody.

"Kody opened it and was, like, 'Wow, Grandma, thanks. Thanks a lot. This is perfect, just what I needed,'" Milissa Kanaga said. "My mom was so happy she was beaming ear-to-ear."

The gift? An old T-shirt and a couple of dirty rags.

"I was proud of Kody the way he handled it," Kanaga said. "It was heartbreaking and funny and touching all at the same time, but he did the right thing."

Ferne Rohman, 70, has Alzheimer's disease. For more than two years, the clarity of her thoughts has diminished to the point where she is unable to distinguish between an appropriate gift for a teenage boy and a box of rags. It is a disease that afflicts 4.5 million Americans, according to the national Alzheimer's Association. That number could rise to as many as 16 million by 2050. There is a vast difference, however, between the number of people the disease afflicts and the number it affects. For every one person with Alzheimer's, there are many times that number - family members, friends - who cope with the difficult disease every day.

Many of those people are children.

"Grown-ups need help trying to deal with and understand Alzheimer's disease in a mother or a father or another relative," said Jackie Bowers, program director at the Alzheimer's Association, Central Illinois Chapter. "Just think how confusing it would be for a grandson or granddaughter. It can be a very frightening thing, especially when children are very close to their grandparents."

People with Alzheimer's disease, almost by definition, disrupt families with increasingly erratic, frequently embarrassing and unpredictable behavior. The degree of the effect on a family is often determined by where Grandmother or Grandfather lives. If it's with one of their grown-up children, the effect on grandchildren can be profound.

People with Alzheimer's disease can keep entire households awake by pacing through the home throughout the night. In a single day, they can be argumentative or distant, profane or silent and confoundingly bizarre. In public or behind closed doors. It doesn't matter.
Ferne Rohman still lives with her husband, three doors down from her grandchildren.
"It's been kind of hard on them," Milissa Kanaga said of the effect of her mother's Alzheimer's disease on her children, Kody, who is 13, and Kasey, who is 10.

Rohman and her family learned she had Alzheimer's disease two years ago. Looking back, the disease explained a gradual, but noticeable, change in her personality.

"One day she put the dog up in a high chair and put a bib on him. We thought it was a little strange, but she just laughed through it and so did we," Kanaga said.

"Another time she showed up at our house with lunch for her two grandchildren. She'd made, like, 15 sandwiches."

The symptoms have worsened since then.

"We keep her involved as much as she's willing to be involved," Kanaga said. "She loves to go to the kids' sporting events, and Kasey plays games with her when they can. We give Grandma a little break. She may say things that don't make any sense sometimes, and she's not the person we had, but we're still lucky to have her around."

Bowers said there's lots a family can do to teach grandchildren about the disease and to stay connected to their grandparents following an Alzheimer's diagnosis. She said children are likely to feel sad and confused about the changes in behavior of a grandparent, frustrated by the need to repeat questions to them, even jealous about the increased amount of attention given to the person with the disease.

Those feelings can lead a child to avoid the grandparent and to stop inviting friends over to the house.

"It's really a simple matter of communication," Bowers said. "Learn about the disease and how it could change their grandparent's behavior and explain it to your children in age-appropriate language that they are going to plainly understand. Come up with things everybody can do together."

Grandchildren can play games with their grandparents - it's an ironic twist that the disease can level the playing field when it comes to small children playing kids' games with their grandparents. They can take walks, fold laundry, listen to music, sing, look at old photographs, read a book out loud, look at the newspaper, watch movies, even keep a journal together.
Bowers recommended a child make a memory box and fill it with items - photographs, birthday cards, stuffed animals, anything that would remind the child of Grandmother or Grandfather in less confusing times.

Kanaga said her daughter still goes to Grandma's house often and plays old maid or Aggravation and just spends time with her.

"She's like her little caregiver. I'll come home from work on a summer day and she'll tell me, 'Grandma did good today,'" Kanaga said.

Her son is taking a different route.

"He tells me, 'It's hard, Mom. I don't like to see Grandma that way,'" Kanaga said. "He kind of looks out for her. She's wandered off a couple of times, and he's gone out looking and realizes that it's as scary for Grandma as it is for him. When he sees her after one of his baseball games, he comes over and gives her hugs and kisses and thanks her for coming. I know both kids are doing their best to make sense of all of this."

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