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.
Wednesday, July 29, 2015
By now a number of years ago, as Gregory's Dementia/Alzheimer's was getting worse and fairly quickly, dinner time would prove to be a difficult time for Gregory and me. For him to figure out how to navigate the food on his dinner plate and in the beginning of this new loss for me, losing my patience with him.
On one particularly difficult night, I do not remember all the details, but I was not only impatient but also mean. I yelled at Gregory for not knowing how to use his fork and for sitting there staring at his plate. I encouraged him to eat but he was really having difficulties. I grabbed the fork and began feeding him. But not with love. With anger and saying something like, "OK then I guess I am just going to have to feed you like a baby!"
Can you imagine how I feel now remembering back and writing this. In some ways, writing it as an apology to Gregory. Now, at Lieberman, he is unable to feed himself and I will help him to eat dinner (or lunch.) Now I do it with love, and care, and patience. As I carefully wait for him to have finished his chewing I bring the next portion to his mouth announcing what I am offering: "Here is a bite of roast beef now." "Here is some delicious mashed potatoes." "Mmmm, this creamed spinach is one of your favorites." I repeat my monologue (or is it a dialogue?) with each bite. Sometimes I'll just say, "Ready?" or "OK?" or "Do you want more?"
Several times, at Lieberman, I have talked to Gregory about how sorry I am about some of the times I was mean before and I might cry a little. While he does not have much language, I think he understands what I am saying and I know that he accepts my apology.
The reason for the Keith Jarrett above is that we used to listen to music at dinner time to make the evening more pleasant and to help cover the fact that conversations were no longer possible unless they were one-sided coming from me. The music made for a mutually enjoyable experience. Keith Jarrett is one of our favorites.
After one particularly difficult blow up, Gregory and I sat quietly through the rest of dinner, tears running down my face, Gregory suffering quietly as well, while Jarrett's Köln Concerts was playing. That piece, if you are not familiar with it, is somewhat noisy, not really melodic, but beautifully strong and emotionally played by Jarrett with his moaning and breathing heavy showing up behind the music. He puts his entire self into the performance.
When the piece ended, Gregory said to me, "That was perfect for our situation. Wasn't it?" At that we were able to "make up" and hug and get on with our life. We were both always good at apologizing well and picking up our love again as we continued doing the best we could do with a horrible situation: Alzheimer's Disease!
In some ways, the more I listen to Köln, I think it would be great background music for the movie of Gregory and my life.