By RYOKO NAKAMURA
RAFU JAPANESE STAFF WRITER
Third in a three-part series.
“I never imagined I’d be a primary caregiver at this young age. Even though I didn’t know anything about caregiving, I just had to do it for my mom.”
About 15 years ago, Naomi Kariyama, a Sansei Gardena resident, noticed that Suzuye, her mom, was showing early indications of developing Alzheimer’s disease. She forgot things and there were incidents around the house such as burning food, leaving the water running, and putting mochi ice cream in the microwave.
The symptoms continued. She started wandering about morning, noon, and night. Naomi had to change all the keys around the house to prevent Suzuye’s wandering.
When they went shopping, she walked out the door in a split second and was nowhere to be found. Naomi called the sheriff. Suzuye was spotted a mile away wandering on her own.
One day when they went to Las Vegas, a phone call from hotel security woke her up in the middle of the night. “Are you related to Suzuye Kariyama?” She looked at the other bed and it was empty. Thanks to the “Safe Return ID” bracelet sponsored by the Alzheimer’s Association, the security guard was able to contact Naomi.
The doctor prescribed a medication that was supposed to slow the symptoms, but that did not appear to be working. Suzuye and Makin, her husband, who lived on Social Security benefits, could not afford $100 for medication every month. They eventually stopped refilling the prescription.
Makin started attending seminars and support groups with Naomi to become a caregiver for his wife. He then learned how to cook, wash dishes, and launder clothes. “I’m sure it was not easy to learn all the domestic duties at his age, but he never complained,” Naomi recalled.
In 2000, Naomi and her parents were on their way to a family reunion in Las Vegas when Makin suddenly became ill. A month later, he passed away.
Makin’s sudden death changed Naomi’s life dramatically. There was no time to mourn. Her life as a primary caregiver started right away. All of sudden, dining out, going to a movie, or planning a trip with her friends became a luxury.
“Financially, applying for a residence home or hiring a professional caregiver wasn’t an option,” she said.
Savings Eaten Away
It was difficult for Naomi, working full-time at a tax accountant’s office while suffering from her own physical problems, to take care of Suzuye.
Suzuye attended an adult daycare two days a week and received homecare from a professional caregiver three days a week. Due to Makin’s passing, their double Social Security income was reduced significantly. Expenses were always an issue.
Naomi continued to struggle with her mother’s progressing illness. When she said to her, “Go to bed,” she tried to go outside. Naomi did not know what to do and often cried all night.
One day, she discovered that, for Suzuye, “go” meant “go outside.” When she changed the phrase to “time for bed,” she then saw Suzuye go to bed as requested. Naomi felt like she was casting about in the dark.
Her turning point came when she met a social worker who suggested that they apply for Medi-Cal. The program can provide assistance upon approval to persons with special needs. It pays for daycare up to five days a week from 9 a.m. to 3 p.m., as well as nursing care costs, if needed.
Things were getting more manageable, but Suzuye’s daycare ended at 3 p.m., when Naomi was still at work. Although there was a free ride home, she could not be dropped off at their empty house. Naomi’s boss was very understanding and agreed to have Suzuye dropped off at her office, where she stayed until the end of Naomi’s work day.
Suzuye’s symptoms were progressing slowly, but surely. She was unable to brush her teeth on her own; she did not remember how to use chopsticks or a fork; she started falling more often; and she finally lost the ability to converse.
In mid-March of 2009, Naomi became ill, and her friend took her to the doctor’s office. Her blood pressure was dropping and her kidneys were shutting down. “You need to go to an ER immediately,” the doctor said. Naomi’s instant reaction was, “No, I can’t. It’s time to pick up my mom.”
While she was getting weaker, a friend drove her to the daycare center to pick up Suzuye on the way to the ER. After running several tests, the doctor said Naomi would have to be hospitalized. “The first thing that came to my mind was, ‘Who takes care of my mom now? I don’t have time for this,’” she recalls.
Finally, she was able to reach two cousins. They took turns taking care of Suzuye until Naomi was released from the hospital four days later. “I was so lucky to find them. They are real troupers, but in the hospital, all I could think of was my mom,” Naomi said.
After she was released from the hospital, one of the cousins said to her, “Your mom didn’t even ask where you were. She didn’t even know you were missing.” That was a wake up call for her. She asked herself, “What if I passed out when I was with my mom alone? Would she be able to call 911?”
The answer was clear. “I never thought something would’ve happened to me even though I have my own medical issues because I’m the one who takes care of my mom.” She realized it was time.
At the end of March, she went to the Keiro nursing home in Gardena to fill out an application. Surprisingly, an opening came up a few days later. “I expected a long waiting period, so I was shocked. I actually turned it down. I wasn’t ready to let her go yet.”
A week later, another opening came up. This time, Naomi accepted. “It happened very fast. I was very emotional. After she was admitted to the nursing home, there was emptiness. I didn’t have caregiving to give anymore and I didn’t know what to do with my time,” Naomi reflected. Visiting her mom every day became her new routine.
On Sep. 13, 2009, Suzuye passed away. She was 90 years old.
Looking back on 15 years of caregiving, Naomi recalls that the toughest time was the beginning, when Suzuye started doing strange things. “I guess I was a little embarrassed because none of my friends’ parents were like that.”
It took a while to accept the disease, but once she realized that her mom wouldn’t change, the embarrassment, stress, and frustration went away.
Even during this time, there were happy moments. “It was when she smiled. She could not verbalize it, but her smile was a natural reaction to happy moments. I still miss her peaceful smile,” Naomi said.
At the memorial service, Suzuye’s youngest sister asked Naomi, “Where is your mom? I haven’t seen her in a while.” Her son was trying to explain that they were at Suzuye’s memorial service. “Oh, I didn’t know. Nobody told me that,” she replied. Five minutes later, she asked Naomi again, “Where is your mom? I haven’t seen her in a while.”
Naomi knew exactly what was going on with her aunt. It was a flashback to her mom’s deteriorating memory. She encouraged her cousin to attend seminars and support groups to get more information about Alzheimer’s.
“Mourning still goes on, but I don’t have any regrets about the caregiving part. I did the best I could. It was a process of learning new things,” Naomi said.
She sold the house where she had lived with her parents. “In a way, it’s like a new chapter, another chapter of my life. I haven’t quite figured out what I’m going to do, but it’ll come along.”
For more info about Alzheimer’s disease, go to www.alz.org. Information about Little Tokyo Service Center’s Alzheimer’s caregiver support group can be obtained at (213) 473-3035. Orange County Japanese American Association also holds a monthly meeting and can be reached at (714) 283-3551.