FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!

PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Monday, January 6, 2014

Love, Valor, and Compassion

I remember a long time ago when the guys were talking about "Love Valor and Compassion." Don't know if it was the play or the movie. Some of them said it was "yucky" that the male lovers were grooming each other: nose hairs, ear hair, etc. Gregory and I have always been comfortable with each other's human nature and mutual grooming, shitting in the room with the other shaving, etc. Today I lovingly thought, "If I used to fuck that ass, I might as well be content wiping it as well!"

I minorly apologize for the above if it caused offense but it is part of our reality and yes, Alzheimer's does not discriminate against same sex couples, which is also our reality! 

Was just going to share the above with a friend but then got going with itemizing the changes we are going through. Don't know why for sure, especially after the resent UPDATE, but will make an excellent e-mail and I can add it to my BLOG. Writing is my way of processing, documenting, and currently living.

Things continue to deteriorate so fast that I cannot keep up and an not sure what is the best way to proceed. I have an appointment to talk with his neurologist's social worker and honestly am continuing (with more urgency) to research memory care facilities. Last night we tried to watch Downton Abby but he got upset, couldn't tell me why, but could tell me he didn't want to watch it. 

His eating is getting harder and harder and during a meal he seems so distant or confused. Like yesterday he stirred his oatmeal for what seemed like forever and I kept having to suggest he eat some. At one point I had to show him "how to eat some." He did a little better with his pasta and meatballs but often brought an empty fork to his mouth. A new perseverative behavior is cutting his food into tiny tiny pieces before eating them.

He no longer can sit in front of a breakfast tray because the number of items is overwhelming so I serve one course at a time. Things he used to love he turns his nose up like smoked trout on a cracker. He seems to have stopped enjoying his evening coffee and cookies. Popcorn is no longer important while watching TV. Meals are no longer enjoyable times but difficult and often upset times with his tears.

He sits and stairs at his morning newspaper front page only. He paces the condo. He no longer looks at the photos each day on the perpetual architecture and the perpetual world art calendars but I continue to turn the page each night in anticipation of him doing so each morning.

A night or two ago he was up for several hours in the middle of the night worrying about something "red?" I can hardly do anything because he cannot occupy his own time and needs someone. Often he sits on the bench in the bedroom while I work at my computer.

He talks to himself. He startles easily. I'll say something to him or suggest something, he'll say "Yes, OH, OK." but continues to do what he was previously doing. This morning surprisingly enough he put on and buttoned his own shirt and jeans but now is panting and moaning from exhaustion.

He doesn't have associations with even the simplest directions: Sit down. Sit. Come eat. Pull your pants down. Come here. Stop that. Pick up your fork.

Often he is not at all present, is distant, is gone. And I sit by his side and wonder where he really is knowing there is nothing I can to to help tether him to me or to life. The other day when he was feeling what I would call the Cloud or Fog of Alzheimer's, he told me he just didn't know what was happening and that he thought he was dying. 

Last night we had a lengthy (although nonsensical but filled with urgency and emotion) conversation. Periodically from his "upset periods" with crying etc, I get the feeling that he is once again aware of who he was and what he has lost architecture-wise, piano-wise, relationship-wise, self-confidence-wise, ability-wise. He cries and shakes and looks so pained. I can only hold and rock and mutter soothing thoughts like "Everything is OK. There is nothing to worry about. I am here for you. Everything is good. Everybody loves you."

Where will the next Moment take us? Maybe I shouldn't be thinking that because that makes the moment permanent and it is already past!

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