A day in the life of my mom who speaks for herself with Alzheimers.
|My day starts when I open my eyes and find myself sleeping on my chair. I try to get up but someone stops me. I jump at the sound of the person’s voice and become scared and frightened. I start to scream, “Get out of my house, why are you here.” Then, I use some profanities and start things to get this person to leave. Finally, I cry so hard and so uncontrollably that I begin to shake. All the while this person is trying to calm me down and tells me, Ruth, everything will be okay. It’s me Joan you know me. I love you.
Joan stands in front of me and I really don’t know her name or anyone else’s for that matter, but I do know her face. Then, my day begins with her taking me to the bathroom and helping me get cleaned up. I smell something and realize that I soiled my diaper and I am not capable of changing it. I try to tell her that but it comes out like, “I know you did it, I think so too, just do it. Don’t you remember.” That seems to be what I say a lot of the time. I don’t know why.
After getting cleaned up she takes me into another place and gives me food. I have no idea what she is giving me and what you call it. I look at it and she says it is called oatmeal. It could be anything and I would not know it. She could give me dog food or worse and I would still eat it if I felt hungry. The trouble is……I can’t remember what I was going to say. I started to tell you the oatmeal was no good but I could not tell her why. I just stared out into space and forgot that I was even eating anything at all. She asked me what was no good and I began shouting NO GOOD NO GOOD NO GOOD and threw the spoon at her and on the floor. I think she was about to say something when my daughter walked in and saw what had happened. She looked at me covered in oatmeal and the food all over the floor and asked Joan what caused me go get so agitated. I was trying to say that the oatmeal was too hot but I could not remember what hot meant or that it needed some sugar because I like things sweeter.
My daughter looked at me and just smiled. I knew everything would be okay because she was there. She came to give me something that looked like a lot of things but I don’t know why I had to take them or if I would even like them. Some looked like candy, some looked like round things and the rest looked like mush. She called it my medicine and said that I needed to take these things in order to be okay. I just spit them all out and yelled NO!
Then all of a sudden something strange that has never happened before really puts me over the edge. I started to curse and use all kinds of bad words and could not stop myself. I kept telling whoever the fat lady is that was in my house to GET OUT YOU FAT THING AND NEVER COME BACK. She stayed calm. She just said, Ruthie, we all love you, it will be okay. I just glared at her in total horror and started to try and leave. “I am not staying here with you. You can’t make me. I hate you.” I was ranting like a crazy lady and could not stop. All of a sudden someone else came and both of them just looked at me and did not know whether to laugh or cry. I just ….. I don’t know what I did. I went back to sleep on my chair and let them worry about what to do.
When I woke up again I did not remember what had happened before but I knew something in me had changed. I began talking funny and sounded like something out of a horror movie. I started yelling, “WOO WOO WOO WOO,” and waving my arms as if I was possessed. I started smiling strangely. I heard the 2 of them say I sounded like I thought I was a different person trying out different voices. I had no idea what they were talking about. I started to pretend I was dancing and said,” I want to float and fly over there with the birds. Don’t you see them?” Then I said, “I want to go over there and eat and eat all of you.” I could not control my words or what I was saying.
I became so out of control that Joan had to call my neighbor and my daughter to stop me from yelling and screaming. All I kept saying was “Don’t you remember, leave me alone, get out of here and stop trying to kill me.” I started to speak but no one knew it was me. I sounded like three different people and they thought I was going crazy.
Throughout the day the same things happened until I got a extra dose of resperidol to help control my outbursts and calm me down. Even the doctor did not know what to say when they called him. His words were, “That is the disease progressing and get used to it.” Get used to what? Not knowing who you are or who anyone else happens to be. I did not even know my own daughter who was standing next to me and trying her best to stay calm for my benefit.
What happened next was earthshaking and even worse. All of a sudden the aide saw something brown and awful on the carpet when she went to help me to the table to eat something. It went down my legs and I could not control or stop it from coming. It looked like a river of dark chocolate. She just shook her head and took me to the bathroom and did her best not to get upset. The rug, her shoes, the carpet and of course me were one big mess and smell. I started to cry because I knew that I did something bad. I said, “I am bad, I am sorry. Don’t yell at me.” Of course no one did.
When it gets dark I get scared because I can’t tell the difference between day and night. I just sit in my chair and watch whatever is on that thing in front of me. Sometimes I talk to the people on that thing and start yelling at them. If I see someone on it hurting someone, I think it is really happening. If I see something I don’t like I start screaming and yelling for someone to change it.
Life has not been the same for me for over four years. It will probably only get worse. My children told me I am going to be eighty years old on Thanksgiving Day. I don’t even know what that means. All I said when they told me I was going to my son for that day is okay. Then, “I want my son, I want him now. No one else cares about me. Just him.” I guess I say that because he is always working and I really never see him except when I imagine it in my dreams. I see a lot of people in my dreams. I see my husband and my sister who are not here anymore. I see my brothers too. I talk to myself and sometimes I even talk to pictures on the piano and to that thing in front of me.
When am I going to be myself again? When is anyone going to be able to help me? I think the answer is NEVER!
How would you like to live each day like this?
Written by her daughter Fran Lewis