By RYOKO NAKAMURA
RAFU JAPANESE STAFF WRITER
The second in a three-part series.
“Let’s put all the valuables in a secure place before our grandkids come,” Jack Yamashiro, 81, suggested to his wife, Agnes, 83. But, he couldn’t remember where he put them after everybody left.
A couple of days later, Agnes found his wallet buried in his clothing at the very bottom of his closet. She wondered, “Why did he put his wallet here?”
She had read some books about it. She had heard some stories from her friends. It did not take much time for her to figure out what was going on with him.
All of sudden, her mind was flooded with memories of his suspicious behaviors: memory loss, irritability, suspicion, and bad temper… One time, he went for a walk and couldn’t find his way home on his own.
“Those behaviors may have been associated with Alzheimer’s disease,” Agnes said to herself.
Jack and Agnes are both Kibei Nisei, from California and Arizona, respectively. Jack lost his father in the atomic bombing in Hiroshima and became an A-bomb survivor when he was only 16.
After returning to California, he attended the University of California at Berkeley, but before his graduation, he was called to duty by the U.S. Army to serve in the Korean War. Because he spoke Japanese, he was stationed as an interpreter in South Korea for two years.
Eventually, he began working at Hughes Aircraft Company as an engineer and graduated from USC through the company’s scholarship program. In 1958, he married Agnes and they had two daughters, Sandra and Vivian. He retired in 1989.
Upon finding Jack’s wallet at the bottom of his closet, Agnes immediately called the Alzheimer’s Association for some advice.
The lady who answered the phone was very kind and took time to listen to her concerns. The representative said, “Yes, it is highly likely that your husband has developed Alzheimer’s disease. If he takes medications at this early stage, it may slow its progression. You should take him to see a doctor soon.”
Agnes anticipated that Jack would be reluctant to go to a doctor because of his proud and perfectionist personality. The representative of the Alzheimer’s Association suggested that Agnes make an appointment with a physician to discuss Jack’s condition.
Luckily, Jack’s regularly scheduled check-up was right around the corner. She made an appointment a couple of days before his check-up. After listening to her concerns, the doctor promised to run some tests to determine if Jack was suffering from Alzheimer’s disease.
She was almost sure about his illness, but there was another side of her that was still hoping she was wrong.
When Jack came back from his appointment, Agnes asked how it went. He replied with a smile, “Everything was fine.” However, a few days later, an appointment notification for an MRI arrived. Jack did not remember scheduling this procedure.
Although the medication was prescribed to slow the disease’s progression, his condition was getting worse. He seemed frustrated by the lack of control over his own behavior. As his stress escalated, he started raising his voice, becoming abusive, and finally being violent towards Agnes.
Then in 2004, Jack was diagnosed with melanoma. He had developed a quarter-sized black spot on the bottom of his right foot. Although the melanoma was removed immediately, this got the ball rolling for one crazy year.
Jack was hospitalized again to have cancerous cells removed from the lymph nodes in his hips. He called constantly to tell the family that he was stuck in a prison in Korea—as if he was back in the Korean War—or that he wanted to come home.
The most distressing episode was when the hospital staff had to tie him up so he could not move. This was the only way to prevent him from constantly removing the IV from his arm. Why couldn’t he control himself?
Recovery was also a challenge. He could no longer walk comfortably, and other aspects of his health started to go downhill as well. He contracted skin infections and fever-inducing heart infections, but he could not tell the family what was wrong. He would be doing an activity, but then just sit there. Because Agnes could not carry him on her own, the ambulance had to be called on a couple of occasions.
Luckily, the infections went away with medication, but now Agnes really needed some help. She was not as strong and quick as she once was, her paperwork was starting to pile up, and her opportunities to be with friends were dwindling. She was beginning to feel out of control.
Agnes was able to find a very nice caregiver to come into her home and help her with Jack. This caregiver was able to bathe him and dress him, but if Agnes was around, Jack would dismiss the caregiver, and Agnes would be stuck caring for him again. The help she was paying for was not giving her the free time she needed.
When Agnes and Jack’s daughter, Vivian, was visiting from San Diego, she was surprised by his abusive behavior. She cried and screamed, “I cannot leave my mom here! She is coming back to San Diego with me!” Jack had changed so dramatically since her last visit. The shock of seeing him as a completely different person made her feel powerless.
One time, Jack was upset about something, and he and Agnes had a big fight. She couldn’t take it anymore and decided to leave the house for a while to cool down. That night, she asked Jack why he was so upset. “What are you talking about, Agnes?” Jack replied. He did not remember anything about what had happened that day.
Agnes made arrangements for Jack to attend an adult day care for five hours a day. However, Jack refused to go after a few visits. When they were parked outside the center one morning, Jack would not budge from the car. “You don’t want to go?” Agnes asked. Jack thundered, “I don’t belong here! I’m not sick!”
Burden of Care Giving
Agnes was doing her best for Jack, but her efforts were nothing compared to the fast-paced progression of his illness. One day, he said he was afraid of taking a bath. Agnes bathed him. The next day, he was upset about something and did not speak to her.
Even though he was wearing an adult diaper, he had an accident every night. Waking up, changing him, and washing the bedding became her daily routine.
One night, she cooked sukiyaki, his favorite dish, but he sat motionless, just staring at it. It seemed like he had forgotten how to eat it.
“The time may have come,” Agnes thought. She clearly recalled what she’d read in a book about what happens to patients in the later stages of Alzheimer’s. It indicated that most patients eventually would be unable to swallow food.
A nursing or a residential care home might have been the best option for Jack, since he required constant attention. But $4,000 or $5,000 a month wasn’t something she could easily afford.
She contacted an agent through the Orange County Japanese American Association’s “Orange Network” publication. The agent found a residential care home near her house within her budget.
The residential care home accommodates six patients with two nurses who are on-site 24/7. Agnes visited the facility and shared her concerns: “When Jack is in good condition, I can take care of him, but when he isn’t…” The nurse put her hand on her shoulder and said, “That’s why we’re here.” Agnes felt right. “It’s like a home. Jack would like it here.”
After Jack went to bed, Agnes packed his clothing in a suitcase. The next day, she drove him to the residential care home without telling him. When they arrived, she said to him, “Jack, I have to be hospitalized for a while. Until I come back, those two ladies will take care of you. So don’t worry, okay?”
Jack gave her a puzzled look but as soon as one of the nurses comforted him, he was taken to his room without any incident. Looking at his back as he went inside the house, Agnes felt a huge sense of relief and sadness mixed with guilt. It took some time for her to feel at ease with her decision. As time passed, Agnes found herself able to move on.
Since that day, she visits Jack at the residential care home every day. Seeing Jack’s smile has become her new daily routine. There is no agitated, angry Jack anymore. He has become a happy person again, just like he was before.
When she leaves, she tells Jack that she will be back later. At the beginning, she felt guilty for lying, but he does not remember things that happened a few minutes prior. Every day he greets her with a big smile and says, “Welcome home, Agnes. Welcome home.”
The guilt and sadness never go away completely. They are just muffled now with all the noise and activities of life. Jack’s smile lets Agnes know that he now has some peace. For all that he has done in his life, he deserves a little comfort and happiness. It’s unfortunate that the clocks in people’s bodies are not always synchronized. Jack’s time came earlier than Agnes’, but they have come to terms as best they could.
OCJAA holds a monthly caregivers’ support group at its office, 2190 N. Canal St. in Orange, on the third Saturday of each month at 1 p.m. For more info, call (714) 283-3551.