From those last depressing posts you can see what our life is like with Alzheimer's. It's up and down, sunup and sundown. I have a wonderful life, I have a wonderful mother. She is still here, and she wouldn't want me moping about and worrying and complaining. She would want me busy, so I am busy, and I am happy, and walked the dogs with my little girl this morning, the way she used to walk with me when I was little. Alzheimer's Disease does something strange to time, it becomes no longer linear, but all surrounding. So today I have a new attitude of positivity, of love, and hope. I wear my #endalz shirt when I'm busy and not with Peggy, so I can remember that having Alzheimer's in my family is special, and that we have a role to play in finding a cure.
Me, working in the kitchen sporting my #endalz T-shirt!
My life is so busy right now. We are starting our own business. Nary Dairy, it's crazy, it's all the time, it's fun, exciting, scary... its consuming. I fell asleep exhausted, but only for a little while and then I woke up and I realized that I didn't see Peggy today, or yesterday. In the darkness my memories of her intermix with where she is now, and I keep finding things there that weigh heavy on my heart. What she would of loved, what I missed. I start to see time backwards. It was my 15th wedding anniversary yesterday. A slideshow starts as I go back and remember 15 years ago. There were signs of ALZ then. But it's now, and she's here, even though it seems as if she's not, she's just a few miles away in a bed. Everything is happening so fast and so slowly. I feel badly that I want it to be over, and now I realize that what I really want is not for it to be over, but a DO OVER. I want this disease to have never happened to us, and what I really want is it not to happen to anybody else. I think about the other people dealing with this in much more difficult situations. And my mind just continues to roll around in it, back and forth in time and memory. So much that I have to get up to stop thinking about it.
So, now I will watch Stephen Hawking, or NOVA and fall asleep, listening to something that takes me out of my mind, so I can stop thinking about what happened to hers.
So Peggy has calmed down a little, and so have I. Every time we take another step down this ALZ staircase it takes an adjustment for her and for me. I was talking to Ruby about what is happening and what exactly this stage entails. I was upset that Peggy seemed very uncomfortable because of her swallowing and coughing, and she said with kindness. "If it bothers you to visit, don't come as often." She was worried about me and caregiver burn out, because she has seen it many times before. But, that's not what I was worried about, I was worried about Peggy. I know this disease is just as hard on the caregiver, but Peggy is the one that is slowly dying. Whether it's for weeks or months or years. That's what it is now, dying, not living. How can I NOT be there for her at this time? We've made it this far together. So, I visit, just as often or maybe even a little more because I have accepted where we are now, and if she's sleeping and doesn't know I was there, I do.
I don't say this lightly, or because I'm tired, or don't want to continue to fight this disease. I say this because I'm worried that she is suffering now. One of the saving graces about Alzheimer's is that everyone tells you that "they"(the patient) don't know what's going on. They are not suffering. Her recent step into yet another end stage makes me feel that this is not the case. She is now having trouble swallowing, and her brain is not telling her throat what is air and what is food. So she chokes, a lot. This makes her upset and red in the face and scared. Which makes me upset and red in the face and scared. She has a patch that helps reduce her saliva, yet it had to be reduced to half because it was making her agitated (what doesn't?). What I'm trying to say, is this is not a peaceful death. And that's why I wish the candles would quickly blow out in an instant and end another one of these "end stages."