Seven Days or a Week

It has been seven days since I was with Gregory. Six days in California and one day regrouping at home in Evanston. I took the extra day not only to regroup, unpack, and chill but also I was aware of some avoidance going on.

I was afraid to see Gregory, wondering how I would feel and wondering how he would react. Would he have missed me? Would he remember me? Now that the documentary "hoop-la" was over, how would it feel returning to my day to day and my visits to Lieberman.

When I turned the corner of the hall towards Gregory's room, he and Manny were sitting in front of the balcony doors, looking outside and singing. I just stood there and didn't say anything. Manny notice me and moved away from Gregory. Gregory kept singing.

I moved more in front of Gregory, put my hand on his knee, and smiled big. I still hadn't said anything. Gregory kept singing.

Finally I said, "Hello my love!" Gregory looked at me with a blank look on his face. "I love you!" Gregory's face changed to his 'oh I have a visitor look.' "I am back and here to visit you. Did you miss me?" Gregory's face slowly, ever so slowly, began to register and process who I was.

"Oh my. It's you," he mumbled through tears and swelling emotion. He began to sob and I leaned in, hugged and held him. I slowly backed away but he held tight and said, "Stay, stay." And I did.

For the next fifteen minutes or so, as I talked and as he mumbled, he went back and forth between laughing, and delight, and tears, and being overwhelmed.

I agreed that it had been along time since I had visited and I apologized explaining where I had been and said I would try not to do that again. Perhaps my part of the conversation was more for my benefit than his.

At one point he leaned forward, very strongly and emphatically pointed out the window and said, "I want to go there!"

"You want to go outside?" I asked.

"Yes!"

"OK, we can go outside if you would like." In my heart I heard him saying, "I want to go home. I am inside and I want to be outside." But who knows how accurate my heart is when it comes to interpreting Alzheimer's Speak.

Finally he calmed down and we just had a good visit, with souvenirs and drinks of water and mouthfuls of chocolate.

I took my leave to go to a meeting with our lawyer, telling Gregory I'd be right back in ten minutes and he let me go without a problem. When I returned he was back in his usual mode of welcoming me for a visit and the trauma of my week's absence seemed over.

So what happened? As best as I can tell, and based on feedback from Manny, Gregory did not miss me while I was gone but realized and experienced the emptiness of my having been gone when I returned. It took him longer to process my face, who I was, what I meant to him and like a developing photograph, the negative image slowly became a positive image.

He was more overwhelmed by the memory of my absence triggered by my return than he was by the actual absence. Either way, we are both happy that I am home and I eagerly look forward to seeing him again today and visiting with the rest of my Lieberman Family as well.

Gregory Maire: Studies in Color and Form: Part 2 The Failure

Many of our wonderful family of friends were able to attend the 6:00 Opening Reception for Gregory's Art Show. The invitation was low key and I understood that the timing was not easy for a lot of people.

That said, thank you for being there or R.S.V.P.ing your not being able to join us: Pat, Isaac, Cheryl, Emily, Kathleen, Vic, Linda, George, Corinne, Nancy, Susan, Jan, Jake, Roger, Marc, Alan, Nancy, Dan, David, Danny. Hope I didn't forget anyone.

The day event at 2:00 was quite successful as you read in the previous post. Gregory was quite exhausted by 3:00 or 3:30 and went up to his room with Manny to take a nap and then have dinner from 4:30 until 5:30.

In anticipation for the 6:00 reception, Manny made sure that Gregory got changed and after he was changed he peed and pooped again and had to be changed again. This is not an easy task for Gregory or those involved.

It takes putting a sling around and under him, lifting him out of his wheel chair in this dinosaur type machine, swinging him over to the bed, lowering him onto the bed, removing the sling, rolling him from side to side to take away the soiled clothing, cleaning him up, and putting on new clothing. 

Gregory is unable to assist so when the aides move him around, no matter how gently, Gregory is uncomfortable, possible in a little pain, and while I am not sure if he is embarrassed anymore at not being able to toilet himself, perhaps this figures into the experience. 

Not sure at what point he "messed again" but having to go through even part of the ordeal again was not easy on Gregory or the aides.

By the time Gregory got down to the lobby all of his guests had arrived, hung up their coats, and were looking at the artwork. Gregory being exhausted, and possibly overwhelmed, was "not present." He sat nobly in his wheel chair but his eyes were closed. 

I tried "waking him up" if he was sleeping but I think that he just didn't want to open his eyes. I call this "My Seven Year Old Stubborn Little Boy Syndrome." 

Most likely he was so overwhelmed from the events of the first reception, then eating dinner and having to go through two "changes," that this was his way of just not wanting any more stimulation.

A number of people came up to say hello, to pet him, to try to get a reaction ... but none took place. I tried to get him to open his eyes several time ... but no go.

Next, as I was hugging him, I lost it. I stifled a loud sob, but not stifled soon enough for the group of friends not to hear. I cried into Gregory's neck/shoulder until I could gain my composure, took deep breath, and came up for air. I understand my eyes were not the only wet ones in the crowd.

At this point Gregory did open his eyes. I leaned in towards him and in my usual slow and carefully pronounced way I said, "I love you very much." He looked at me and replied, "I know."

Next I continued, "And you make me very very happy" to which he replied, "I know."

Then he looked me directly in my eyes and said loudly and clearly, "Thank You!" He closed his eyes and disappeared for the rest of the reception.

Enough said? I learned many lessons and had several insights. So calling the reception a "failure" is not really true.

First, I had hoped so much that he would be present for those people we value most in the world, our friends. Next I realized that I was disappointed in his behavior (erroneous) and embarrassed (erroneous) in front of our friends.

I also realized that this reception was another one of my attempts at making it seem, for Gregory and me, like our life is "normal" when in reality it is NOT! My expectations for Gregory had inadvertently caused him to become uncomfortable, not feel safe, and to withdraw.

I am not sorry about the experience because it is always a risk when trying to provide Gregory with "joy" and "meaning," I would not want to settle for less if I did not have to, and I was able to learn from it.

I need to be more aware of how much he will be able to take and when enough stimulation is enough. I need to keep in mind his comfort zone, not mine. 

While I felt disappointment and embarrassment, those were emotions triggered by old learning and no longer really a part of me, Gregory and my situation, and definitely not true triggers or true emotions.

I know that our family of friends were there to support both Gregory and me and I appreciate that. I know that Gregory was aware of the love and support that was in the room for him.

In the end, the most important part was Gregory letting me know he knows I love him, knows he makes me happy, and thanked me for letting him know that. That is all that really matters (and the new lessons hopefully not to be repeated next time.)

How Many Times?

How often can I cry out to the mountains, pleading
When its weight in rocks is my life's daily pain?

Screaming NO NO NO in my sad, lonely silence
Until my throat and breathing cries NO NO NO.

Overwhelmed. Devastated. Exhausted. Sad.
Tears of blood flowing, washing down my face.

With my emotions which are no longer valid to him
But still oh so valid for me, oh so valid, oh so real.

He does not cause this, but I am brutally caused.
He does not control, this but I am cruelly controlled.

Not understanding even the words I very carefully use
Nor the explanations I still try to give, to help, to share.

We sit at the restaurant table with our closest friends
I hold his hand, stroking, trying to help him be involved.

Love cannot describe the immensity or the agony of my love
That no longer soothes but only torments and tortures.

How often can I cry out to the mountains, suffering
When its weight in rocks is my life's daily pain?

.

Today

Today I feel:
     sad
     frightened
     lonely
     angry
     empty
     unhappy
     tired
     frustrated
     overwhelmed
   
Then I ran a very hot tub, turned off the lights, and meditated. I realized that it could be (and will be) worse, but for now OK. I realized that nothing MAJOR or DANGEROUS or INCURABLE or UNREPAIRABLE is happening or changing. I realized that the SUM TOTAL of it, almost ten years now, is what gets to me, PIECE by PIECE and at times PEACE by PEACE.

So now I am dried off and dressed. Writing. Feeling better. Thank you for asking!