An Example of Home Care: The Case of Chen Ein-Shei
Patient, Taiwan ALS Association
Chen Ein-Shei
I was diagnosed as ALS in 1995. I was teaching at the university of South Bay in California. Before I developed ALS, I was a certified practitioner of traditional Chinese medicine as well. When I was a student, I was the chairperson of the Student Union. I was chosen to be the chairperson of the alumni association after graduation as well, and I was active to promote exchange of Chinese medicine academics between China and America. In addition to that, I took in part of local activities in South California and was also a very active member of the Women's Club in Garden Grove City, Chinese Lions Club in Orange County, Taiwan Hometown Association and Overseas Chinese Commerce Association in South California.
When I was diagnosed as ALS, the doctor told me the life expectancy for two years. My younger son was just ten years old, and my older son was a freshman of the University of California at Berkeley. Seeing me depressed, rejecting any visits from my friends, he moved from Berkeley to UCLA. After finishing his college education, the older son spent two years taking care of me, and then he went back to the university to study medicine.
I attended the meeting of local ALS association every month while I stayed in California. There, I was impressed to know another patient with ALS lived more than 20 years without having bronchotomy. I gained courage to live with ALS.
I and my husband, Dr. Chang, Jin-Lai, an orthodontist, left the USA when the 9-11 happened, and we live in Taiwan now. We decided to come back to Taiwan because it was not easy to hire caregivers in the USA, and my condition became severe. In Taiwan, I am classified as the severely disabled person, andI can hire two overseas caregivers to take care of me under the Taiwan system. Today, I would like to introduce my daily schedule, hoping to present an example of home care for the patients with ALS.
Today, I have two caregivers, one from the Philippines and the other from Indonesia. They take care of me in turn, and exchange their shift once a week. I miraculously have been enjoying my life more than 13 years since my diagnosis. My success is accomplished with a comfortable environment for home care, and the support of my family (parents, sisters and brothers, relatives, friends, husband and sons and daughter), as well as my own optimistic nature and my attitude respecting life. Today, I spend my regular daily life, without having bronchotomy as well. I have three meals a day as healthy people do. Only difference is that I need longer time to eat with the help of a caregiver.
I wake up at 5:30am every morning. When I wake up, the caregiver working as a night shift massages my hands and feet for 15 minutes. Then I move from bed into a special wheelchair, drink 250cc of warm water, brush my teeth, wash my face, go to toilet, and then havemy breakfast with my parents at 6:30am. My breakfast menu is oatmeal, vegetables, cabbage, tofu,furikake(rice seasoning powder) with pork and egg, etc. I can swallow food only slowly, so it takes at least one hour to finish my breakfast. After breakfast, I brush my teeth immediately, wash my mouth, then the caregiver massages my whole body, or pat my hips and back, to improve blood circulation. My whole body is paralyzed and I cannot exercise by myself. So I move my body with the help of the caregiver, and does circulation exercise of arms and legs or balance training of lower extremities for 45 minutes.
Then, I use computers to do the internet surfing, or communicate with my friends by MSN or webcam. I am disabled, but my consciousness is clear. I operate computers with my left toe, the only part of my body I can move by myself. I can chat with my daughter who is teaching English in Japan, can use webcam to see my son, my daughter-in-law and my grandchildren. I can also communicate with other ALS patients or university friends using MSN. We tell how we are doing and encourage each other.
About 10:00am, another caregiver prepares porridge for me, so I eat it. I wash my mouth soon after I finish eating in order to keep my mouth clean. Then, I go back to the internet. At 11:00am, I drink fresh fruit juice, and have lunch with my parents around 12:30. My teeth are in very good condition, and I can bite food properly. I have three front teeth implanted, but all the other teeth are my own, so I can eat same things as healthy people can. Thus, I can take ample nutrition and maintain health and physical strength. It takes about half an hour to eat lunch. After lunch, I watch soap operas or movies on HBO, etc. At 4:00pm, I take a nap forhalf an hour in bed, drink some vegetable juice, take a bath, and then come back to the internet surfing.
I eat supper at 6:30pm, and visit my parents and spend the evening with them till 10:00pm. Then, I check emails and write emails to my friends. Every night, I use webcam or MSN to chat with my second son who is in the Faculty of Law of the State University of Michigan. I learn about my son's life, and encourage him to study hard. Normally I go to bed before 11:00pm, after brushing my teeth and washing my mouth. My sleeping time may not be long, but I can fall to sound sleep as soon as Iget into bed.
I enjoy myhappy life to the full with nothing to worry about.
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