A Chinese daughter's caregiving journey with her mother_2


Alzheimer's disease does not announce its arrival but develops gradually in life: A Chinese daughter's caregiving journey with her mother_Part 2

I want to add that my mom was very independent before she got ill. Just think about she came to the US alone, worked here, learned English here, attended tutoring classes, and drove herself. She danced and was very good at it, she did ballroom dance, and sang, knitted sweaters, and painted very well too. She was number one in doing puzzles at the day care center. Although she was sick and forgot some things, she still had a clear and logical mind, and she liked to quarrel with others. She also played mahjong at the day care center, exercising her brain, and engaged in physical exercises too. The volunteers over there once said that they could write a paper about the many changes my mom had over there. Usually my mom would call her friends from home. Later, her friend asked me, "How is your mother?" I said, "Very good!" Her friend said, "Because I haven't heard from her for a long time." Then I observed carefully, and noticed when my mom answered the phone, she could only ask "Haven't seen you in a long time, how are you?" Then she was unable to continue the conversation actively. A few minutes later, she would repeat she hasn’t seen her friend for a long time. Maybe she realized she was not able to carry a conversation, so, eventually, she stopped calling others. 

Around 2000, we knew nothing about Alzheimer, thinking that it was natural in aging. In public, when she went grocery shopping, walking along the aisles, she would dance along with the music she heard, and sing along if she knew the lyrics. I was embarrassed as people would stare at me. Later when I connected these incidents, she was probably already getting a little sick at that time, because she was not able to control herself. I was very busy then, and sometimes had to work overtime. When I got home, I couldn’t find where she had put the kitchenware, and the cooking spatula was placed in the shoe box. We would find slippers in the cabinets, and she would take a five-gallon water bucket into her room. My husband purposely posted a note to remind her not to carry water by herself, instead ask for help, it was dangerous. My daughter said, "Grandma, if you carry the water and fall down, we would be busier. I can’t go to school, and mom can’t go to work." Later we posted notes wherever visible to remind her not to cook, or carry water, it’s too hard for her. At that time, my daughter had dried flowers in a vase. My mom didn't know but thought that the flowers were too dry. We didn't know that she had been watering them. One day, I got home from work, flies were everywhere. Later, I cleaned the rooms and tried to find the source and found that they came out of that vase, the bottom of the stems was all rotten. There wasn’t a day we felt relaxed and calm at home, we were very nervous every day. Later, I couldn’t take it anymore. As my mom had Kaiser insurance and she could see a doctor there. The doctor happened to be a geriatric specialist. He said that my mom should not be left alone for too long. Someone must be talking to her, she could go to church, or join a group, and referred us to a Catholic day care center. When I first went there, the day care center did an assessment with me and concluded that I had severe depression. I had a chance to take a break when I sent my mom there, and I need to rest well before I could take care of my mom. My mom spent a very long time there, and I participated in family respite activities. Peining also brought in guest speakers to give seminars and to guide us. I learned how to better take care of my mom. When something happened at home, I would step out the room, take a deep breath, and then I could go back without losing my temper. She was not a child, I could not scold her, more importantly she is my mom. One time, my husband just got home, and my mom stared at him and asked some questions. As he wasn’t feeling well and sat there, I said just leave him alone, my mom lost her temper and said she was an elder, how could I order her around. She then pointed her finger at my husband’s nose. My husband was agitated and stood up. I was anxious and said that they both were sick, they were not to lose temper. I shoveled myself between them and fell, as I had arthritis and couldn’t afford to fall, or I would not be able to stand upright. After I fell, their focus shifted, both of them get me up immediately, and their argument was gone.  

My mom was taking her osteoporosis medication, and she needed to take it immediately when she woke up in the morning. Later, I told the doctor I could not give it to her because I had no idea when she would wake up. Sometimes she woke up at 3AM, ate some cookies and went back to sleep, and I wasn’t sure when she would wake up in the morning. Elderly people generally go to bed early, but she did not go to bed very early, and I didn't realize she had irregular bed time until later. We also installed sensors at home, around the corners of the room and by the main door, we could hear the beep-beep, and we could make her go back to her room, that was a preventive measure. Later, my husband felt that I was too stressful, so we had to put her in a senior apartment. 

We hired a caregiver to be with her at the senior apartment. She had someone to accompany her from the time she returned to the senior apartment and when she went to bed at night. I would visit her when I got off from work, may brought her food, and I would go home after she went to bed. Sometimes, my husband and I would eat together with her at her senior apartment. 

Even when she passed away, my mom didn’t lose her ability to recognize people, so I didn't notice she was in her end stage. Towards the end she had hard time swallowing. She could still recognize people she held dear in her mind, such as her close friends. The staff at the nursing home were very experienced, they asked me to contact my mom’s close friends to go visit her. They were so surprised that my mom could recognize these close friends. Sometimes she was very smart, she would say, “My brain is in bad shape, those computers would be fine after replacing their motherboards, if I could replace my brain, wouldn’t it be well again?” She used to tell me that. Sometimes, she answered this way, it seemed pretty normal.  

She was very excited when my friends came. She loved crowds. She would dress up and put on her makeup. She would say, "Haven’t seen you for a long time." But when she went to the room and came out again, she would say, "When did you come? Haven’t seen you for a long time." After she did that three times, they would ask me if my mom was sick. Her hospitability and crowd loving character was there when she moved in the senior apartment. She enjoyed chatting with others there, the receptionist downstairs is a Vietnamese man, my mom would talk to him in French. He said my mom speaks very good French, better than her English.  

Since I have older brothers and sisters, we planned to prepare [my mom to move to the nursing home], but the people at the day care center said we don’t have to, because she was able to feed herself, choose her clothes, and she didn’t want people to pick her attires. Towards the end, when she needed to use adult diaper, my sister and I had to make a lot of effort, because she felt that she was still quite normal, but sometimes she would have accidents, so we figured out a way--put pull-up diapers in her closet.