Sad, Frightening, and Beautiful

Today at Lieberman I witnessed something sad, frightening, and beautiful.

First, the set up. Today at Lieberman we had an Oscar Previews Party. The staff wore formal gowns and heels. A few female residents wore beautiful hats with feathers or cabbage roses and a few male residents wore sport coats with a jaunty scarf tossed around the neck.. There was a red carpet to walk down and you could have your photograph taken by our volunteer photographer.

Slides of beautiful dresses, beautiful people, and previous Oscar winners over the years were shown, trailers from each film nominated for best movie were shown, all categories were discussed and residents could vote for whom they thought would win.

The first trailer was from Sharpshooter, biopic of Chris Kyle, the most-celebrated sniper in American military history. In the aftermath of 9/11, Kyle decides to serve his country by becoming a Navy SEAL.

Second, the sad and frightening. As we watched the trailer, Gregory began getting upset and his upset elevated fairly quickly. He got loudly verbal, anxiously shifted around in his wheel chair, and cried. The reaction was caused by the shooting and violence we were seeing in the trailer.

After ten or fifteen seconds of trying to calm him down, to no avail, I asked him if he would like to go out of the room. (I felt like a loving mother with a misbehaving child at the movies. Instead of expecting "self control," remove the child from the situation. ) 

He said, "Yes." 

I repeated, "Do you want to leave the room?" 

"Please," he said. 

He continued to get more and more upset emotionally as I was turning his chair around to head for the door when he picked up "Peaceful the Bear" and threw him down on the floor with such never before seen force and anger saying, "There!"

Up until then Peaceful was always loved and loving. Comforting. Watching this was amazing.

Third, the wonderful. Gregory and I hugged and rocked and I cooed calming words. He calmed down once we were away from the shooting and violence on the screen. The situation and discomfort was over and Gregory was OK again. I put Peaceful back into his lap and said, "Peaceful loves you!"

The beauty in this is that Gregory still has emotions and is able to express them. Also, it is important to note that the emotions are not unreasonable or out of control. Life has its ups and downs. It is good that Gregory is still able to experience them!

Oh My Heart

Yesterday when I arrived to visit Gregory he was being changed by the aides. I didn't let him see me so as not to complicate the situation and waited in the hall until they were finished.

Changing Gregory's diaper (I hate using that word) is at most , when he cooperates, a difficult situation. He is tall, weights 180 lbs, and has to be moved to his bed using a hoyer lift. A sling is inserted behind his back and brought up around his legs. The ends of the sling are attached to the machine and he is lifted into the air, swung around parallel to the bed, and lowered into place.

Then the aides take off his pants (and often his shirt,) clean him up, and put on a new diaper. This is done by rolling him from one side to the other. The aides have to do all the work because he cannot roll himself. Then they put on new clothing, reattach the sling, lift and swing, lower him back into his wheel chair.

I would guess that this is not only a little embarrassing (although I think Gregory is used to it by now,) but uncomfortable and at times painful. Depending on Gregory's "state," it is also frightening for him to be dangling in the air and he becomes resistive, known to swear, kick, and/or struggle. The aides are kind and gentle and are able to "talk him down" but as I said, it is not an easy activity for Gregory or the aides.

That described, yesterday after he was back in his wheel chair, I came into the room. "Hi, its me!" But Gregory was still "recovering" from his ordeal and was unable to focus. I tried to put my face in his line of vision, continued announcing myself, but he was still unable to focus. I think that he was actually unaware that I had arrived.

Finally he did a double take, and I mean a double take like in the movies, and he was able to focus on me, realized who I was, and a large smile came over his face.

Here comes the title of this post: He looked into my eyes, with this oh so pleased look on his face, reached out towards me and said, "Oh, my heart!"

I melted.

A Play in A Series of Poems

I have written many pieces of poetry chronicling the path which I have traveled with Gregory, my life partner of over 35 years, who was diagnosed with young onset Alzheimer's Disease some ten years ago when he was fifty five years old. For the most part, the feedback on my work has been favorable. 

For a next project, wouldn't it be interesting to try to write a screen play in which the audience would experience what a person with Alzheimer's goes through and what those who love him endure? It probably wouldn't be hard for me to write the screen play because I have so much material from which to draw.

The question, however, is who would want to watch it? Who would want to sit through some 90 minutes with one intermission of heaviness, sadness, frustration, confusion, depression and tears even if laced with love, compassion, insight, and humor?