Waukesha couple stays in step with Alzheimer groups

Alzheimer's Association
Monty and Kuei Johnson attended the Aug. 1 Gallery Night at Martha Merrell's, where their art was on display all month. They are standing to the left of their artwork.
Published on: 9/2/2014

This weekend in Frame Park, more than 800 walkers are expected to join together and support the Walk to End Alzheimer's.

One of those walkers, Monty Johnson of Waukesha, said that the walk is important to gain recognition and funding to support families like his.

His wife Kuei was diagnosed with early-onset Alzheimer's 11 years ago and he has been her caretaker, supporting her through the disease ever since.

Unexpected onset

Monty met Kuei in Taiwan while he was serving in the Air Force. They married, moved to Waukesha and raised a family.

"In the early 2000s I noticed she was starting to forget simple things," Johnson explained. "She used to repeat a lot of things and we thought she was just nagging us, reminding us about things.

"But it got to the point where she couldn't remember what day of the week it was and eventually what month it was. She got confused about what season it was and finally couldn't remember what year it was. By that point she had a couple incidences driving where she couldn't find her way back home."

That's when Johnson took Kuei to the general practitioner and, by July 2003, she had been diagnosed with Alzheimer's.

Memory support groups

The Johnson's, who belong to the First United Methodist Church in downtown Waukesha, got involved in program their church had already set up.

"People in the church there had recognized a need for a ministry involving people who had memory lost or issues in general," Johnson explained.

Memory Ministry provided an outlet of people who had similar struggles and stories. As a caregiver, Johnson met speakers and members from the Alzheimer's Association and other organizations that provided resources for Kuei.

In addition, the two have since attended events at Memory Café, a social event in Brookfield that once a month brings together memory-disorder victims and their caretakers. Johnson is working with a group to start a similar event in Waukesha.

"We were thinking about setting up a Memory Café in Waukesha, so we were going to observe but we liked it so much we've been going ever since," Johnson said. "Sometimes we play games, sometimes we sing songs, sometimes we have people come in and talk to us, but it's a fun event to go to once a month and get your mind off of everything."

The Johnsons attend several other programs, events, and groups the two over the years.

More than the mind

The reason why they keep so immersed in memory-related activities is simple: Alzheimer's "turns your world upside down," Johnson said.

"The disease starts in the short-term memory and spreads outward from there and affects everything the brain controls," he explained. "That initially might be where she doesn't remember what happened yesterday, but eventually it gets to the point where she literally doesn't happen 10 seconds ago. She will be in the process of going from one place to another to do something and by the time she gets there she forgot what she was going to do."

Johnson said he has developed patience and structure in the household in the past 11 years down to leaving notes when he goes to run errands.

"She asks questions 10 times in a row," he noted. "And your first reaction as a human being is that you already answered, but over time you begin to realize that she doesn't know that. So I am to the point where I answer the question each time because that to her is the first time.

"She misplaces things in the house. I spend a lot of time looking for things and you have to get creative as to where she might have put something. She has some difficulty in matching clothing. It really affects every part of your life."

Alzheimer's walk

Johnson said that he is excited about the charitable walk on Saturday, Sept. 6, because it is an organization he supports.

It provides services he has directly benefited from and some that future generations may benefit from as well.

"The Alzheimer's Association probably does more to address the issue of Alzheimer's than any other group in the country," he said. "They raise money to provide the kinds of services that I described, but also to provide for research to try to find a cause and a cure for Alzheimer's. There aren't too many other organizations that are involved in doing that.

The need for such an organization may be greater than people realize, Johnson added.

"It's my opinion that (Alzheimer's) is an epidemic in this country, but we tend to simply ignore it," he said. "There's a lot of misinformation and lack of information among the public. A lot of people think its just a part of the aging process and there's nothing to be done about it.

"That's completely false. It's a disease just like diabetes or heart disease. It can be cured if we do enough research to find the cause and can cure it."

For more information or to donate, visit www.alz.org.