Editor’s note: The following story from a caregiver’s perspective was written by former Hawaii Herald writer Alan Suemori for a moving and informative section on Alzheimer’s disease that he produced for the Herald’s 1995 New Year’s edition. Alan is now a history teacher at ‘Iolani School. In last year’s Alzheimer’s edition, we republished his touching piece about his father’s battle with Alzheimer’s disease.
“My husband was a very quiet man. But one day he told me he was going to retire from his cab driving,” recalls Doris Takeshita. “He said he couldn’t pass the oral test for cab drivers anymore. He couldn’t remember the street names.”
In 1989, the Takeshitas flew to Las Vegas for a vacation. There, more signs that something was terribly wrong with her 68-year-old husband began to surface. “He began to wander off and not return,” says Doris. “I would show him how to work the slot machines and he would immediately forget.”
Hoping that it was only a temporary, passing symptom of aging, she took her husband to a physician who pronounced him fit and healthy. Mr. Takeshita was simply feeling the inevitable effects of growing older, the doctor assured her. “Meanwhile, my husband was driving on the wrong side of the road, and when we would sit down to eat dinner, he would ask, ‘Where are my brothers and sisters?’ says Doris. “Back then, everybody called it ‘senility,’ but very few really knew what was happening.”
Once, while looking at a picture of their family, her husband pointed at Doris in the photo and said gently that this was his wife who had disappeared a long time ago. He could barely recognize their youngest son. “I didn’t know about Alzheimer’s at the time,” says Doris. “It hurt me a lot that he didn’t remember me.”
The Takeshita family eventually found a neurologist who gave the family a more accurate diagnosis. He was suffering from Alzheimer’s disease. Armed now with the correct assessment, they were left on their own, however. “When the doctor told me he had Alzheimer’s, I was angry and hurt and scared. I didn’t know what to do,” says Doris.
“The hardest thing about coping with this is that you don’t know what to expect. I went to a support group for Alzheimer’s families and one woman was saying her husband was violent. Somebody was telling me to create a support network, but nobody I knew had it.”
Struggling to accept the presence of the illness in their lives, Doris was apprehensive of how she and her husband would be treated by her community of friends once they discovered his fate. “I had to deal with the stigma and the shame. All of a sudden my husband is acting crazy and I was afraid of what my friends and family were going to say,” says Doris.
“I come from a very strict and proper Japanese family and I remember my parents telling me don’t do anything to shame or embarrass the family name. But then I realized that it wasn’t my husband’s fault that he had Alzheimer’s.”
Doris ended up sharing her tragedy with her inner circle of family, friends and neighbors. To her surprise, they were all supportive and helpful. “The hardest thing was to tell the first person. After that, it was easy,” she says. “The fact that everybody I cared about knew what was happening took a big load off of my back and made me feel less alone.”
Doris began attending a support group at the Alzheimer’s Association on a regular basis. “At first I said I didn’t want to go. I felt like I could handle my own problems,” she says. “All I heard during the first meetings were people talking about their problems. But before you know it, their problems became my problems. So I learned to listen.”
Still, there was no getting around the fact that the burden of caregiving was Doris’ to carry on a daily basis. “Before this happened, I thought I knew what life’s ups and downs were all about. But taking care of my husband showed me the real depth of life.”
It was after sundown that Doris’ husband would be embraced by a restlessness that is a common symptom in many persons suffering from the disease. As the illness attacks the body’s natural timepiece, to the patient, day becomes night and dusk becomes dawn.
“I would wake up in the middle of the night and he would be packing a suitcase and telling me he needed to go home,” says Doris. “I found that I had to play along with him and make everything like a game.”
Taking care of yourself while nursing an Alzheimer’s-afflicted spouse as you both grow older is hardly the dream that dances in anyone’s head when they marry. It certainly wasn’t what Doris had envisioned in her life. She found herself questioning the logic of her life.
“The most difficult person was when he still had a sense that something was wrong with him. To see this person who was so strong and to see them get less and less capable . . . There were times in the illness when you feel like he’s already not living. You try so hard to make a day worthwhile, and he couldn’t even remember the day,” says Doris. “I have always been a positive person, and I always thought I was in control of my life. But I’ve learned there is a lot in life that you cannot control.”
Unlike many persons suffering from Alzheimer’s, Doris’ husband passed away quickly from the disease, which progressed from the initial symptoms to the terminal stage in five short years. “Selfishly, I wish I could have had more time with him, but I can’t dwell on the past. My husband went fast, and knowing how he would have suffered, I feel like we were spared,” she concludes.
“As difficult as it was, I’m grateful I took care of him. I feel like we have to give something back. We are here on this earth for such a short time and we cannot just take. Now I have all these memories. And memories are what keep you going.”