You You, Me Me, Wa Wa Wee

Our friend Pat took this video of Gregory. 

In an e-mail yesterday, she explained: "It's from July. We were fooling around with singing & you can hear him respond to me by going lower & lower. Even though he was not looking at me, he obviously heard me & responded. I think it was the same visit I got him going & he sang "you-you-you" (or yoo-yoo-yoo"  & then, when I said playfully that I liked that song, especially since it was all about 'me,' he launched into the opposite, a song "me-me-me."  Or at least that's how I interpreted it."

For some wonderful reason, Pat and Gregory and Gregory and Pat built such a huge bond in the short time they knew each other. 

At Lieberman, he loved his time with Manny his private care helper and friend, was a pleasantly surprised to see long time friend and housekeeper Halina at his side, was always happy to see me, and always pleased to receive visitors. 

But the reception he gave Pat always seemed to be the largest of all with verbal "Wonderful" or "Oh My Oh My" or "WaWaWee!" She was probably the most loyal friend in her bringing Gregory treats and surprises and visits.

I am grateful for Pat who defines what a true friend can be.

Getting This Off My Chest

I just need to get this off my chest and then I'll get on with it. I feel sad when people who used to be a big part of our life no longer come to visit Gregory and me now that he is at the memory care facility.

He certainly is a lot different than he was in his prime or even a year ago. I understand that many people cannot bare to see him in his present condition. I know that sometimes these kind of visits can be painful. I know that Gregory's situation possibly reminds them of their parents, or their grandparents who went through a similar journey.

Because I see him every day, I am used to his "here and now," and I know that it is easier for me than others. I try to keep people up to date on the changes going on, the good, the bad, and at times the ugly. That is if people care to read the blog posts. So there should be no surprises when visiting Gregory. Visiting together with me present makes it easier, I can carry the conversation, I can suggest interactions, I can give a "bad weather alert" when necessary.

But I also know that Gregory is still Gregory, although deeper down inside at times. His radiant spirit, sense of humor, wonder and amazement still shine. When a friend or family member comes to visit it may take Gregory a moment or two to focus on the arriving guest, but when he zeros in, he gets such a look on his face of love and joy, often tears arrive with an "Oh my," or "Oh wonderful." or "Oh look."

You never know whether a huge smile will take over his face or tears of joy will run down his cheek but you can always count on his being happy to see you! While he may not remember the person's name, or their relationship to him, he does know that the person visiting is someone special, some one who loves him and someone whom he loves in return.

Some of our family and friends live far away but when they are in town they always make a point of making sure we visit Gregory. Many of our family and friends who live close by have never seen Gregory, some have seen him only once or twice in the year he has been at Lieberman.

Some people visit Gregory more often and join me on the visit. I am always happy to arrange my time to suit a friend when they want to visit. Other people drop by on their own and spend ten or fifteen minutes many times a month.

I make no value judgement. I do not try to inflict guilt. I know that everyone has their own lives to live, and as Gregory's mother used to say, "everyone has their own cross to bare." But I do feel badly that "circumstances" can alter "friendships" and "relationships" so greatly! Sad. Sad for Gregory. Sad for me.

Visiting

Visited Gregory yesterday. Arrived before dinner and visited. Sat during dinner and visited. Went back to his room after dinner and visited.

Visited. What does that mean?

In our narrow world it means repetition and simplicity. Playing, eating, sipping water or juice, watching South Pacific (over and over again,) putting on a "Peaceful the Bear" puppet show.

Sometimes just quietly hold hands while we sit together, him in his wheel chair and me on a stool at his side. He doses off. I look at him closely, wondering.

The other day, my outer voice said, "I miss Gregory."

My inner voice said, "You shouldn't miss Gregory. He is still with you."

I realized that what I miss is my old life with Gregory. In many ways even when he was a lot more available that "old life" had passed with only the memories left.

It was an abrupt, unexpected ending last January 2014 when I had to call 911 to help me deal with his violence and then to find Lieberman Memory Care Center for him.

But that was ten months ago and both Gregory and I have settled into our new lives.

What I miss is living with a person in a relationship that has 40 years of experience and practice. I miss the little sound bites, little sayings, little doings that no longer exist. I miss our conversations. I miss waking up in the morning next to him. I miss sharing a dinner out. There is so much I miss.

But amazingly enough, Gregory and I continue to build new experiences based on his current level of ability. I pop a mini-cookie into his mouth and he replies "mmmm." I stick a pretzel rod into his mouth and let go. He knows to reach up and hold it and finish eating it.

If the half a cup of water is left close enough, sometimes he reaches over picks it up to take a drink. When he gets nervous that his wheel chair is being pushed down the hall too quickly, I reply, "No, it's OK. I am a safe drive. A very safe driver."

We do "forehead kisses" by leaning our foreheads against each other in a 30 or 60 second "embrace." We kiss on the lips. I make a loud smacking, high school newly learned how to kiss sound to make sure he gets the idea. Recently he has begun making the sound too. Sometimes when we kiss he says, "More."

He does his "jabber routines" in various languages. They make no sense but he is able to carry on and then we both giggle at his joking in Russian, Yiddish, Italian, Insane Person.

He will give me a "look" and I will ask, "What?" He will say "What?" in return. We go back and forth maybe some 6 or a dozen times: What? What? What? What? Then we giggle.

When he tries to say something or tell me something and gets frustrated at being unable to do so, all I have to do is say, "I know." And he calms down, trusting that I do understand. Sometimes I do, most of the time I only understand that he is upset and that my sound bite can settle him.

I tell him stories about his, our past and he seems to enjoy them. Sometimes he gets melancholic but usually with a sadness of joy at remembering.

In his world, our life is full. In my world, I am content. Or as I say "STRANGELY CONTENT."

Welcome to My Zoo

I do not mean this to be a comment on any of our friends or family who have come to visit Gregory at The Lieberman Center. I see it more as my problem, not theirs. But I need to write about it.

For a first visit, I will go to The Lieberman Center with a friend to visit Gregory. I can introduce the visitor to the center, help them find Gregory in his room or at his current activity, provide a buffer in case it is not a good day for Gregory or a support to the visitor if the visitor has difficulties in dealing with Gregory's "Here and Now." After that I release my need to be there to the friend's discretion.

Many people have not wanted to visit Gregory because, I understand this with my entire heart, they cannot bare seeing what he has become.

Others need to see Gregory in his present circumstances so they can come to some closure with what has taken place due to the Alzheimer's.

Others want to be there to support him and to support me.

Some have had similar experiences with their own family members due to either Alzheimer's or the need for a care facility due to illness or old age.

All of the various reasons are based on love.

BUT, sometimes I feel like a game keeper at the zoo. I am there to protect the animals but also to protect the visitors.

I put Gregory on display, hoping he will perform, will show recognition, will behave appropriately.

I will discuss the various types of training he has gone through and the various tricks he can or can no longer perform.

Step right up, step this way, see Gregory in his current condition, in his current situation. Be amazed, be amused at what Alzheimer's has wrought.

Try to explain away the situation, try to understand what is going on in that void, or not.

Ouch. All I can say. Ouch. And sorry for my rantings.

Secret Revelations

Today Jan dropped by for a visit. She brought a latte which Gregory enjoyed very much. In fact I think he was in "seventh heaven" while sipping it.

A short while later he got very serious and was almost proselytizing on the beauty and importance of what he understood, "saw," wanted to communicate. His words were bits and fragments, his sentences not finished, his communication nonexistent.

But what he shared was significant to him and therefore to Jan and me. We agreed, shook our heads affirmatively, said we understood.

At one point he seemed to have a revelation saying, "Now I see. It is ... it is ... beautiful. Beautiful. Beautiful. Beautiful. Beautiful. Beautiful.
In this series of photographs you can almost feel Gregory's rapture and Jan's expressive response reflected her calling Gregory's pronouncements, "Sacred Visions."

Today Pat Visited

Today Pat dropped by for a visit and brought along her book of elephant photographs.