I unexpectedly became my mother’s caretaker for the last two years. Our journey together has ups and downs. It was very hard the first three weeks because my mother did not wish to be with me. She wanted to either go back to her own apartment in Virginia or go live with one of her sons. She packed a backpack with different items every day, ready to go. When she felt a backpack was not enough to hold things, she bundled belongings and used whatever she could find as cords to tie them together. She has cut a charging cable and an electric cord from an electric blanket for her purposes. She packed and repacked picture frames that hold pictures of my dad and her parents so many times that she broke the stand of a brand new frame. She badgered me every day about taking her to the airport or a bus station so she could go back to Virginia. She asked my son-in-law to take her when I refused. Then one day, she had had enough.
She put a heavy backpack on her 85-pound frame and walked out the door. It was a good thing my daughter and son-in-law were home that day. They were working on installing window films. I walked after my mom and asked her to come back. She turned around and yelled at me, telling me that anxiety was like a fire in her belly and how could I tell her to forget about her apartment in Virgina. She felt she needed to go back to check it over, to make sure all her belongings were still there. She kept on walking, I kept on following her. Every time I asked her to return, she gave me a lecture. The road was hilly but that didn’t faze her. Not until she got to the main road three fourth of a mile from home that she seemed tired and ready to concede. She pointed to a building and said that must be the bus station and she wanted to go there. She agreed to sit down to rest. My grandson had followed us on his skateboard. He sat with her and massaged her feet. I called my daughter and son-in-law to pick us up in a car.
My oldest brother came to visit shortly after and told my mom he could not take her to his home. Things became calmer after that. My mom decided that he came to see if she was well cared for, and since everything was to his satisfaction, he didn’t need to take her to his home. She stopped “running away,” but the packing and repacking continued for a long time.
My mom finally settled in. No more packing. Now she doesn’t remember much of her life in Virginia, nor does she know where she lives currently. She doesn’t remember how she got here and how she and I came to be together. She no longer remembers that she was the one who took us out of Vietnam at the end of the war to escape a life under communism fifty years ago. Sometimes she thinks some of her children are still in Vietnam. She asks how she and I found each other and how we ended up living together. She often asks where each of her children lives. When I say my sister lives in Chicago, she thinks that means my sister is in Vietnam.
My mom’s dementia worsens as time goes on. Nine month after she moved in with me, I took her with me to Hawaii when my second daughter gave birth to her firstborn. We lived with my second daughter in Hawaii for three months to help take care of the baby. My mom thought Hawaii was her home, and forgot about Texas. When we came back to Texas, she forgot about Hawaii.
My mom knows me as her daughter most of the time, and at times forgets about her other children. She no longer remembers names of her grandchildren, great-grandchildren, sons-in-law, and daughters-in-law. She often confuses my older brother with her own brother. She constantly asks me if her brother or my older brother is still alive. She forgot that she lost a son when he was eleven. She asks where he lives now.
My mom knows me as a source of comfort. She gets anxious when I am not around. Not long ago she was agitated when I was gone. My son-in-law took her on a walk. He said she kept walking longer than the usual route she takes when she walks with me. I wonder if she was angry with me and her anger fueled her energy, just as the time she put her backpack on and walked out the door. I started taking my mom to my soccer and pickleball games. She had never come to watch me play soccer even though I’ve been playing soccer for almost 30 years and she lived close by. Now she contentedly sat on the sideline watching me play. She enjoyed the attention my teammates gave her. Often she prefers going out with me than being home without me even when it’s hot outside and she cannot lie down. I learned that I cannot take her everywhere. I took her to my annual check-up with the audiologist. While I was in a booth concentrating to listen to faint sounds, what I heard instead was her reciting poems! Poem reciting must give her comfort. She does it more and more and it could happen at inappropriate times like when we were at a show or a piano recital. I have to watch out for her poem reciting and her bladder emptying. I cannot leave her alone for a moment at public parks or outdoor venues because somehow she feels she can empty her bladder in nature even when there are people around. More recently, even soccer fields and pickleball courts are not safe when the need for bladder emptying arises.
My mom no longer has a concept of age and time. She doesn’t remember how old she is. She may say she is fifty, or twenty, or ninety. She doesn’t recognize the blessing of having a long life. She thinks my father and my uncle have died at a young age when she is told that they are gone. The fact is they died in their 80’s and my mom is now 98. She may ask if one of her children has gotten married or if they had babies yet. She goes back to childhood often. Sometimes she thinks her parents are still alive. She asks where her parents live.
When my siblings, or nieces, or nephews come to visit, my mom keeps asking them how they know where she and I live, or why they know she lives with me. She marvels at their being so smart for finding our place. She also thinks I am smart when I know how to drive to different places.
My mom’s hearing gets worse. She often hears wind blowing and comments that the wind is so strong. During her first year being with me, she’d argue with me that it was my hearing that was bad if I could not hear the wind. We got her hearing aids but they didn’t work out. She doesn’t understand she should wear them all the time. She lies down so often they keep falling out of her ears. She would put them away but not consistently at the same place, so we constantly have to look for them. I finally put them away and only use them when we are in a weekly zoom meeting with my siblings.
My mom constantly unplugs her cell phone when she sees it’s being charged. She doesn’t remember when I tell her to not to unplug it. My younger brother and my mom’s cousin calls her every so often to talk to her. She does not remember how to answer the phone anymore. If we are around when the phone rings, we help her answer.
My mom is a curious person. She always wants to know what something is. If there is a stack of mail or papers or magazines or something on the table, she’d pick them up and look at them. If she sees a package of wet wipes and she doesn’t know how to open the lid, she finds scissors to cut the package open. I do not know how many packages of wet wipes she had dried up. I’ve stopped putting wet wipes in her room or her bathroom. Once I put a box of television wall mount brackets in her room, waiting for my son-in-law to install them on the wall of her room for us, she tore open the box and left a mess. I have learned not to put any unopened boxes in her room.
Yesterday while the four-generation household of seven members sat down at dinner together, my mom said she was the only one left in her family because her brother and parents had died. I told her that the six people around her are her family and she’s not alone. I am not sure if she understood but she said “Thank you.” Then she asked where she and I first met. I was a little confused. I wasn’t sure what she meant to ask. I made her repeat the question. Then I said, tentatively, “When you gave birth to me.” She laughed. I definitely should laugh with her. Laughter is a good response.
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