By RYOKO NAKAMURA
RAFU JAPANESE STAFF WRITER
The first in a three-part series.
Alzheimer’s disease is a terminal brain disorder that causes confusion, irritability, aggression, memory loss, and more.
According to the Alzheimer’s Association, as many as 5.3 million Americans are living with the disease, yet unlike heart disease or breast cancer, there is no magic bullet for Alzheimer’s disease. Its mortality rate has increased by 46 percent from 2000 to 2006, making it the fifth-leading cause of death in the U.S.
While a loved one’s memory is getting cloudy, what is going through the caregivers’ minds? How do they deal with this reality? What does Alzheimer’s disease really mean to those who take care of their loved ones?
It could happen to anybody, but nobody is truly prepared until this disease hits close to home. Three families share their experiences.
It was 64 years ago when Kanichiro Tsutsui, 82, born and raised in the countryside of Mie Prefecture, fell in love at first sight with a city-bred young lady, Kazuko, at his relative’s wedding. They tied the knot in 1954 and have been together ever since.
In 1987, they moved to Laguna Nigel, to live near Mikio, their only son. They have been actively involved in Southern California’s Japanese community and have volunteered at numerous organizations such as the Kenjinkai Kyogikai and the Japanese Chamber of Commerce of Southern California. Because they are always together, they soon became known as lovebirds in the community.
About eight years ago, Kanichiro noticed that Kazuko was repeating herself. Their mutual friend suggested they see a doctor.
As soon as the doctor diagnosed her with Alzheimer’s disease, the associated negative stereotypes—wandering about, dissolution of personality, and family breakdown—came to Kanichiro’s mind.
“I was very scared. I thought I was about to lose her. I thought she would become a completely different person that I didn’t know,” he recalled.
Although he knew a little bit about what Alzheimer’s disease entailed, it was clear that he did not have enough information to become a caregiver. He purchased many books and attended the “Alzheimer caregiver support group” organized by Little Tokyo Service Center, in an effort to learn more.
In the early stages of Kazuko’s disease, her symptoms included repetitive speech, the deterioration of short-term memory, a loss of interest in her hobbies, and depression.
Even Kanichiro, known for his gentle personality, often loses his temper when Kazuko forgets things. He couldn’t accept the fact that Kazuko, who used to be perfect and precise on everything, now gets done only 80 to 60 percent of what she once accomplished.
“Why can’t I love her the way I used to? Something needs to change. How can I change?” Kanichiro kept asking himself.
A Valuable Lesson in Kazuko’s Smile
One morning after they had breakfast together, Kazuko went back to the kitchen to prepare another breakfast.
“Again? Give me a break!” Kanichiro screamed in his mind. He went to the kitchen to stop her and try to explain that they’d already had breakfast.
Just as he was about to open his mouth, he saw Kazuko’s kind, smiling face. It was clear that she really enjoyed preparing breakfast for him.
“She was making breakfast with her heart and soul, just like the first time. Her smile made me realize how shallow I was, and I regretted my attitude,” Kanichiro recalled.
“If the brain of a healthy person scales 100, my wife’s brain is probably 50,” he said, “but she has been living every moment by getting the most out of that 50. I shouldn’t judge her based on the way she was. She has changed. Her perfect score is now 50, not 100 anymore.”
Kanichiro felt a sense of relief, a relief from his assumption of how she should be. He was finally able to accept her change and felt a sense of peace that he hadn’t felt in a long time.
“Kazuko doesn’t repeat the same questions for fun. She has been seizing the day with her remaining ability. I have to support her effort,” he explained.
Strangely enough, as soon as Kanichiro became more understanding and supportive, Kazuko became calm and peaceful. “Life is like a mirror. If I want her to be nice and calm, I should be the first to do so.”
He has been open about his wife’s disease, which is very rare in the closed Japanese community. “There may be people who are in the same situation as I am. When somebody wants to talk about being a caregiver, they can always contact me,” he said.
In fact, Kanichiro proposed the need for a caregivers’ support group in Orange County. Hiroyuki Kawachi, a member of the Orange County Japanese American Association, agreed and they now have a monthly meeting at OCJAA’s office at 2190 N. Canal St. in Orange on the third Saturday of every month from 1p.m.
Even though Kanichiro takes Kazuko to the meeting, he hasn’t told her about her disease. “She really enjoys living in the moment. Even if I told her, she wouldn’t remember. I just don’t want her to worry unnecessarily,” he explained.
Kanichiro appreciates the help and understanding he has received from his friends and his community. Kazuko’s hairstylist has been patient with her repeating questions, the Kenjikai members welcome her as a part of their family, and their female friends assist her in the bathroom.
There is no treatment or cure for Alzheimer’s disease. Their doctor said patients’ conditions and symptoms vary, but Kanichiro strongly believes that it is possible to slow the progression with compassionate support from caregivers.
He tries to stay positive and appreciate simple pleasures. “Through this experience, I’ve learned the importance of accepting her the way she is now, not the way she was,” he said.
Mikio, their only son, stops by their house for breakfast every morning before going to work. After that, Kanichiro and Kazuko go for a walk hand in hand. Their neighbor even asked them the secret of being so happy together. Kanichiro replies, “Be together with a peaceful state of mind.”
In the evening, they decide what to cook and make dinner together. This is also a fun exercise for activating their brains.
“We were lucky to meet each other in this world, so it is my responsibility as her husband to take care of her until the last,” said Kanichiro, who is determined to care for her at home.
“Forgetting isn’t always negative. Kazuko doesn’t remember things that happened five minutes ago, but lives in the moment. Her cheerful personality hasn’t changed since we met 64 years ago. She is the sunshine of my life.”
For more info about Alzheimer’s disease, go to www.alz.org; LTSC’s caregiver support group, (213) 473-3035; or OCJAA, (714) 283-3551.