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.
Sunday, February 16, 2014
Joy and Sorrow
When I arrived at Lieberman this evening, Gregory was having dinner (with Manny's help.) Greg was alert, smiling, eyes wide open, head sitting much more comfortably on his shoulders (lately he has been having supporting his head.) I was so happy and joyed to see him probably the most together since his seizure. He talked a little, responded to questions, smiled, ate well.
Meanwhile Eddie, who is a table mate of Gregory's, was a little grumbly. I tried to engage him a little and he responded meanly. I reached over and stroked his hand. He calmed down a little. I held his hand through the rest of my time at the table. He held my hand with sincerity, what ever that might look like expressed by a 99 year old man with advanced dementia. He calmed down and seemed to thrive on the touch of another human being.
I found out that "B," the female at the table who told me it was none of my business how many times she and her husband had sex (even thought I never asked) was an actress. We talked about theater a little and she perked up as well. "Now I am retired and that is good." she told me with a smile.
New to the table is "J." Just arrived in the area to be closer to her son "H" (a gay man who was there with his lover "R.") She is beautiful in her old age, sophisticated, kind, and friendly. At the end of the meal she told "H" to make sure he left a nice gratuity for the waitress. I have to admit, it made me feel good to have other gay men with me in that environment.
Turns out that "H" is an interior designer/architect and asked the name of Gregory's firm. I told him a little bit about the kind of work Gregory did and boy did Gregory perk up. Greg said me, "Tell the story," so I continued telling. I almost cried right there. I have been telling both Gregory and my stories for many years now but since Christmas and his drastic down turn I not only haven't had to tell his stories but had almost forgotten they exist.
There was a wonderful camaraderie among the people sitting at the dinner table this evening, some satient and some less so. At one point I turned to "H" and said, gesturing to myself, "This is all a front. But it feels good."
Later, after Manny had left, Gregory and I were in his room watching TV. Gregory started getting upset in the way that I have identified as his needing to go to the bathroom. I tried to calm him down and asked, "Can I talk to you?" He looked at me. "Since it is so difficult for you to get up on your own, there is nothing for you to do but pee or shit in your pants. You should not feel bad about that. They will clean you up and you'll be fresh as a daisy again.
He grabbed his penis area saying, "Oh no not this again." I stroked his hand and purred "Just let it go. Don't worry about messing yourself. Just let it go." Slowly he calmed down and I could smell the results of our conversation.
I mentioned to the passing aide that Gregory needed to be changed and when might that happen? I have learned not to be too insistent and to not only recognize that they have so many others to attend to but let the aides know that I recognize how much work they have to do and that they cannot do my bidding instantly, no matter how painful it is for me to know Gregory needs to be changed.
While we were waiting for help, the nurse arrived with Gregory's medications. She was impressed that I spoke Spanish. She is from the Philippines and while she doesn't speak Spanish fluently, it is a common language for many Philippinos.
She shared her sadness at what Gregory has been going through at such a young age but assured me that Lieberman is one of the best places she has ever worked at and over the years she has worked in everything from public assistance facilities to high end suburban places. "Lieberman is the best," she said again.
I showed her the photographs of Kai and Paz, our two Philippino/American God Sons. She commented, "What an honor that must be for you to know that people you care for in return love and trust you so."
In ten minutes or so, Gregory's aide and the one I caught in the hall came in ready to help. There was no one else readily available so I said I would help, "You just need to tell me what to do so I won't interfere." I think they appreciated that.
It was at least a three person job to get Gregory from the wheel chair into bed and not without a shout of what? pain? fear? disorientation? from Gregory. But I knew from past experience that whatever it was, it would be gone and forgotten shortly when G was all dry and clean and in bed ready for bedtime.
So there is Gregory in bed, a male and a female aide helping him and his lover as well. Gregory, nude as a j-bird while the male is cleaning him up with a wet towel. Gregory began to cry. From what embarrassment? Who knows. I leaned over and hugged him and again purred, "No no no. No need to get upset. Everyone here wants to help you get comfortable. Everyone here loves and cares for you. It is not your fault. No need to be upset.
And Gregory did calm down, stopped crying, and just was. Once he was dry and in his sleep shirt, with blanket nicely pulled up around his chest, he was happy and back in the moment. I sang him a lullaby and he closed his eyes and dozed off.
Wish that I could just be in the moment and leave my what? pain? behind!