Yesterday was a strange day. Things have been super busy around here, but something yesterday made me stop, think, and reflect. Yesterday I had a visit with my mom. My mom is in the severe stages of Alzheimer's Disease at only 71 years old.
Whenever I go to see my Mom, one of the things that is usually required is some reorganization of her room. She tends to take everything she has and put them in different spots. Tuesday, I found clothes in the trash, shoes in the drawer, books under the bed, pillows in the closet and so on. Some times I choose to leave things just the way that they are, knowing that if I left, the next day they would be a mess anyway. This time, I decided to straighten things. She wasn't in her room, instead out on a walk with one of the nurses, so it gave me time to do it without her around.
So, I straightened her room and got together all of her dirty clothes to take with me. I refolded and reorganized all of her clean clothes and put them in drawers. I picked up all of her books and replaced them on her book shelves. I found the three photos that she has of my sister, myself and our kids and placed them on the shelf. She has very few possessions at this point, so going through and doing this does not take a lot of time. I did notice that I could not find the necklace that my son had made her and she used to wear all of the time. This was a warning. Clothes in the trash and a necklace missing meant that the necklace that she once held dear was gone. Probably tossed in the trash, no longer knowing how proud my son was that he made it and she loved it so much. This was a warning to see if there was anything else that needed to be taken. Anything of any value.
She returned from her walk and we sat on the bed. She was hungry and was "trying" to eat an apple. I say "trying" because even to take a bite of it as a laborious and confusing situation for her. I sat and we talked. This meant that I listened to her talk. She spouted random sentences, mostly none of them making much sense. We had a nice visit, but then I had to go. I explained that I would be back tomorrow. I knew that this meant nothing to her as she would forget soon after the words left my mouth.
I showed up yesterday, Wednesday, thinking that the Mother's Tea was at 2 pm. I got there a bit early in order to unload her laundry and to make sure she recognized me. I saw right away that something was amiss. I asked and found out that the Tea was at 3 pm. I wanted to go, but it didn't matter much, because my Mom really had no idea that it was even happening. I wasn't going to be able to stay. I had to pick up my daughter by 3pm.
On to her room,and I saw her sitting on her bed looking at a book. She was once an avid reader, but now can not read anymore, so she instead looks at "coffee table" type books. She was looking at an art book...upside down. I greeted her happily, unloaded her laundry, rearranged her drawers again, and then sat with her to talk about the book.
She went into, what she thought was, great detail about the "book." I began to realize that she was somewhere in between knowing that this was a book and thinking that this was also some sort of album about her life. Stuck in a sort of limbo. She gave me reasons why this guy put this book together, the story about it and how she fit in to mix. Honestly, most of it was jibberish. Nonsense. I sat there nodding, agreeing, and trying to interject a comment that would let her know that I was enjoying her discussion.
Then suddenly she looks down and starts talking really softly, in order for no one else to hear but me. She says, in a low and annoyed tone, something like, "There are all these families that live here and this is my space, but these people are always here, just trying to be in my business." It was not even that coherent, but I responded, "Well, Ruth (her roommate) is sleeping on her bed." She says, "No," as her eyes "point" to something behind me. She whispers, "That lady standing right over there and that crazy guy. They are just staring at us." Creepy? Yes. I knew there was no one there, but still felt inclined to turn around and look. Was anyone there? I say no. She would say yes. Her hallucinations tell her there are people in her room all of the time. That was such an eerie feeling.
We finished looking at that book and she moved onto another. Again, caught in her world, almost a purgatory of sorts. Definitely not heaven, certainly closer to hell, but a world in between. Finally, I asked to see her hand and took her rings. I told her that I was going to have them cleaned, slipped them on my own hand, as not to lose them. By the time the rings were transferred, the thought was lost. She had moved on to something else. Almost the last thing of value was being taken. The only thing remaining of value is my Mom.
We soon said goodbye, I gave her a kiss and a hug and said that I would be back on Sunday, Mother's Day, to take her to breakfast. A quick glimmer of child-like excitement flashes across her face and fades as I walk out the door. The reality that I am now her mother and she, my child has hit me again.
I was telling my sister, Morgan, about the experience. We both described it as trying to talk with a person who was mentally ill...which I guess, at this point, she is. She absolutely has her own reality. It consists of a world that we are rarely part of. There are people that play parts that only she knows, that only she sees.
This was one of the days that I left very upset. I wanted to talk with someone. Someone who knew what I was going through. The three people I called, my husband, my sister, and a friend were all unavailable. Suddenly I felt so lonely. As if I had been totally encompassed by these emotions. I can only describe it as being left in a dark room, surrounded by nothing. Isolated with my feelings and realizing that no one really "gets" how it feels. No one to rescue you, to help get you out. Heavy. Heavy on my heart, on my entire body. No one to help bear the load.
Even those, like my sister, who are also going through this, do not have the same experience as me...do not deal with my Mom on a regular basis. Again alone. I had no one to talk to and had to somehow hold it together because I had to go get my daughter from school. Hold it together for hours. She was having a play date at our house. No way to release the pain.
I know that I have friends. I have an amazing family that is and always has been supportive. But yesterday, none of that mattered. Yesterday I felt totally and completely alone. Desperate for connection, yet realizing the connection I would get wouldn't suffice. Not today.