Yesterday I came home and you asked "who are you?" My heart broke into pieces. I told you I was your daughter, Megan and you said " ohh yea that's right." Today when you came home from daycare you were tearful and a little out of it like you have been lately. Your words were a little slurred. I asked if you knew who I was and you looked me right in the eyes and said " yes, your my moga" It wasn't my name exactly but I knew what you meant and my heart leaped for absolute joy! The rest of the evening was touch and go... You never got flat out angry like you have been. I changed you for bed and after you walked in circles for a bit finally got you to come lay down next to me in bed. We sat for a minute together and then I left to check on the kids. You got up shortly and came out of your room, so I went back and got you settled in bed again and started to leave. You began to cry and called out to me, so we laid for a while together in bed holding hands. You gently rubbed my hand with your thumb. I could remember laying in bed with you like this countless times before but this meant so much to me because I don't know how many more times we have to do this. I asked if you were "OK?" you instantly settled down and said "yes, are you?!" Your voice was clear and concerned for me. We were mother and daughter again not mother and caretaker daughter. It broke my heart and made me joyful all at the same time!
The last few nights have been extremely difficult for you and us. Sundowners Syndrome is plaguing you like never ever before. When the clock strikes 5:00 you start to become extremely agitated. Walking quickly from the den to the kitchen making a circle and repeating over and over again. Anything that crosses your path does so at its own risk, furniture and toys are subject to be grabbed and carried on the constant moving journey with you or kicked across the room. When Everett crosses your path you will usually slow and tell him to come to you, he is on his own journey of constant motion and when he doesn't join yours it increases your agitation. As the evening progresses your agitation grows to outright anger. Not allowing yourself to be calmed by anything, especially me. This chaos continues for sometime and after wearing yourself down some you allow me to feed you dinner or help you to bed. Once in bed you become emotional and look at me with longing lost eyes. I can really see you in these moments and we both mourn the wretchedness that is this disease taking over your body. Your face looks more hollow and saliva drips down the sides of your mouth because swallowing is becoming an issue for you and your mouth hangs slightly open. I kiss your forehead and weep, not quietly. Tonight you looked up at me, took your arms from under the covers and wrapped them around me as you told me "it will all be ok." That's all I needed to completely dissolve into a mess of puddling tears. Somehow when I am at my lowest lost moments you come out from the shadow and tell me what I need. This morning it was " I love you " tonight it was " it will be ok."
We are facing a change. One I never wanted to face but knew somewhere in the back deepest part of my mind we may have to. I have tucked it away... thinking we will be the case of Alzheimer's where it doesn't get to bad. Where you don't have to have professional care full time. Where I can be enough. You have continued to grow more and more agitated when you get home from Jan Werner in the evenings. Everything seems to bother you. You are picking fights with Everett, grabbing at his toys, telling him not to do things. When he tells you No or tries to grab his toys back a tug of war ensues increasing frustration on both sides. You have begun to grab at his arm or shirt. Sometimes you tell him to Shut up. It breaks my heart into a million pieces. You and him have been the very sweetest of playmates. He loves to follow you around when you walk aimlessly around the house. He is still the one that makes you smile in the morning when he walks in and says "HI" to you. All memories of the night before are forgotten between you both. But I remember and I am realizing that our chaotic home full of noisy kiddos and left out toys are maybe not the best environment for you. You need to be somewhere calmer and quieter. It kills me to think about the other options available to you. This is the hardest decision I have ever had to face. I wish so badly you could tell me what to do.
We are facing a change. One I never wanted to face but knew somewhere in the back deepest part of my mind we may have to. I have tucked it away... thinking we will be the case of Alzheimer's where it doesn't get to bad. Where you don't have to have professional care full time. Where I can be enough. You have continued to grow more and more agitated when you get home from Jan Werner in the evenings. Everything seems to bother you. You are picking fights with Everett, grabbing at his toys, telling him not to do things. When he tells you No or tries to grab his toys back a tug of war ensues increasing frustration on both sides. You have begun to grab at his arm or shirt. Sometimes you tell him to Shut up. It breaks my heart into a million pieces. You and him have been the very sweetest of playmates. He loves to follow you around when you walk aimlessly around the house. He is still the one that makes you smile in the morning when he walks in and says "HI" to you. All memories of the night before are forgotten between you both. But I remember and I am realizing that our chaotic home full of noisy kiddos and left out toys are maybe not the best environment for you. You need to be somewhere calmer and quieter. It kills me to think about the other options available to you. This is the hardest decision I have ever had to face. I wish so badly you could tell me what to do.
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