Today We Played Piano

Today, during one of my recent extended stays with Gregory, we listened to piano music. We started with Beethoven followed by Schuman, Rachmaninoff, and Chopin.

Through most of Beethoven Gregory moaned with delight. "My. My. My. My. Oh. Oh. Oh. Oh."

During Schuman he cried with joyful reminiscence. I also helped his hands move through the motions of playing the treble with his right hand and playing the base with his left hand both in time to the piece we were listening to. While I did most of the movement I could feel his hands and fingers responding behind my control.

During Rachmaninoff we laughed when I said, "Too many notes," and retold the story of my father's comment/ compliment at Gregory's recital of Rachmaninoff for the family, "That sure was loud!"

After the first few bars into the Chopin, Gregory covered his face with his hands and began with a cry, then moved into sobs, which escalated to howls and over and over again saying something close to "I can't, I can't, I'll never." As suddenly as he went into his reverie he arrived back. I held him and we rocked for the rest of the piece.

During the Beethoven and Schuman, I asked several times if he was OK and he clearly said, "Yes."

During Rachmaninoff I commented, "What a fun time we are having!" He agreed.

For the Chopin, after his howling subsided, I asked if he wanted to stop listening for a while and he clearly said, "Yes, for a while!'

Through most this experience I measured my emotions which were ones of joy at being able to provide Gregory with memories and an opportunity to express his emotions. I was "here and now" and didn't think about his loss or my loss of who my best friend/lover used to be.

When we got to the howling, I began to cry as well, was overwhelmed with the Gregory who used to be and our relationship that does not and never will exist in the same way again. I began wondering at the worth of the experience. But Gregory's need to howl was there and it arrived and I held his hand and we rocked and it was over and it was good.

I feel great joy and great success when I am able to provide for his needs and feelings no matter the cost to mine!

Crying Myself Silently

I have learned to cry myself silently
Without making a silly squeak
No body shakes or loud noises
But tears still as large as sobs

A song, an idea, a line in a play
Bring on a wave of emotions
I have learned to cry myself silently
But tears still as large as the ocean.

A thought, a memory, a photograph
Bring on an attack of emotions
I have learned to cry myself silently
But tears still as large as wars

Over time, I have learned to say
"Thank you emotions
"Thank you tears
"Just not right now

An E-Mail Reply

From niece MB (daughter of Al, Greg's oldest brother:) 
I have been concerned about you since Gregory has moved into his new home. I know they are taking care of him. That will give you time to make adjustments to your life.

Thanks for the kind words. I am doing well. We have been struggling with this for over ten years and the major difference, now that Gregory is in the advanced stages of the disease, is that the concerns, needs, and ability to define new normalcies have been narrowed. 

For the most part the routines and normalcies for Gregory are now predictable whereas during the early parts of his disease, it was a baseball game without rules!

As for my living alone, our relationship was always one of parallel growth. We both had the same interests and friends but maintained our individual interests and friends, and of course the two overlapped at points. So while I have to redefine my new life living alone, I do not have to redefine my life or identity entirely. 

I have had to learn to live in the present moment, as Gregory does, and to see life through his eyes. When I am able to do that, I am happy and content. When I begin to see his life through my eyes, I have more difficulties avoiding crying and grief.

Not sure if there will be a price in the future, but for now I have been separating myself into two parts. When I am by myself and at home I try not to think of Gregory and our past 39 years and when I am with him I try not to think about home and my life and our past 39 years. 

Some Buddhist monks spend a lifetime learning how to live in the here and now, without living in the past or the future. Both Gregory and I have been able to do that. He because of the Alzheimer's me because of my great love for him.

At home I'll keep busy with friends, keeping the condo up, writing, etc but when I am with Gregory, sometimes we just sit and hold hands and that is paradise and enough.

In the beginning it was difficult learning how to let go and become the Secondary Care Giver with The Lieberman Center (and their trained, knowledgable staff) being the Primary Care Giver. 

I am still Gregory's advocate but have begun to know how to choose my "battles." The staff at Lieberman actually listen to and hear what I say, try to accommodate my suggestions and Gregory's needs, but also help educate me when I am out of order or unrealistic in my goals for him.

Gregory's CONDITION is much worse and continues to worsen but his SITUATION is so much better ... so my heart is light.

Today at Lieberman

Today, I got to Lieberman by 1:00. Gregory was happy to see me and seemed able to focus pretty quickly on my presence. He asked a question I haven't heard in several weeks, "Where have you been?" My stock reply, "Shopping." He laughed. I laughed.

I sent Manny on a "break" so Gregory and I could be alone. Very often we just make "nice/nice" or sing or sit and watch South Pacific, the musical. Often I get there by mealtime and I sit with Manny or Alaksh and help Gregory with his lunch or dinner. Sometimes, if I am the only one there on that day, I will take turns feeding him and helping him feed himself.

I pulled his wheel chair as close to me, head on, as I could. "Can we talk?" I asked. "I love you so much and really miss you. You mean so much to me and I want you to know that I am here for you, to help you and to take care of you. I know that we both didn't expect it to be like this but this is our life now. I wish I could make it all better but we both know I cannot.

I hope you are happy here and know that everyone likes you and is taking good care of you. I am happy. I want you to know that. I hope you are happy too. The money is OK so we don't have to worry about that. Now that you are OKed for Medicaid, all of this help is free, we don't have to pay a penny. (Actually his Social Security money goes to support, in part, the Lieberman fees.)

I know you have forgiven me for the times when I was mean or angry. I know it wasn't your fault but I am just human. You have been a trooper through all of this and have been so accepting and loving.

I am not sure if you understand everything I am saying but I wanted to say it. You don't have to say anything to me because I can see all your love for me in your eyes. In your and my tears. It is OK for us to cry together. Then we can be happy again. Or maybe the tears are of happiness. Tears of love.

You are my love. You are my boyfriend. Your are my best friend. I love you so."

At this point I offered Gregory a tissue. I had been wiping both of our tears but now he put it to his nose and blew. Still knows how to do that. We held hands the entire time.

At one point I got on my knees in front of the wheel chair and laid my head in his lap. He put his hand on my head and patted me. It was not easy for him to control his muscles but he did it and we both felt good. I kissed him all over his face and sang, "Soft Kitty, Warm Kitty, Little Ball of Fur. Happy Kitty. Sleep Kitty. Purr. Purr. Purr."

This is the song that Dr. Sheldon Cooper's (from the TV series Big Bang Theory) mother used to sing to him when he was sick. It has become Gregory and my theme song. Often I will tip his chair back, put a pillow under his head, and sing him into a nap. Which I did after our talk. I also put a blanket over him because blankets are warming and comforting when taking a nap, even when you have Alzheimer's and even when you are in a wheel chair.

It was a good afternoon.

Laughing into Tears

Crying is so much like laughter and laughter is so much like crying. Sitting with Gregory at the hospital I found that we would laugh together with tears right behind. Emotions Emotions go away. Come again another day.

In some way I am feeling numb again, which I have experienced at various stages in the progression of Gregory's illness. This time it is as if he has died and in some ways he has. There are a lot of "never agains" and "forevers."

He will never be able to come home again. He will never visit the condo again. We will never be able to decorate for Christmas at home. Many traditions are gone and over. The kitties miss his being here and he will never be able to take a nap in the bedroom with them ending up in his lap asleep and purring. Dinner parties? Overnight guests? Holidays? Birthdays? Grocery shopping? Sitting in the TV room? and on and on.

Slowly I will get used to living alone. Last night I panicked three times when waking up, realizing that he was not in bed with me, afraid he had "wandered," and then realizing that I didn't need to worry about where he is.

As you know, I do not believe in prayer, but it seems anyway appropriate to say that I just hope that he is able to settle into the Lieberman Center and that he is not aware of what his surroundings really look like.

Update on E-Mail Update

My e-mail has been "dinging" off the hook with so many supportive replies to my update broadcast on Gregory and my continued journey with Alzheimer's. Over the next few days, I will be sharing some of the comments (names will be changed to protect the innocent :-)

Meanwhile I am afraid that we might be the closest that we have been to  having to find a Memory Care Home for Gregory. It may or may not be imminent depending on what course the illness next takes. I am still able to keep up and will continue to do what I have to do but at times the presenting situation is so strange that I do not know what to do or what the best course of action is.

For example his recent crying and upset jags. For seemingly no reason he gets upset and is not easily calmed. He does calm down eventually with soothing comments like: Everything is OK ... Everything is good ... love ... happy ... Everybody loves you. etc

One an episode took the direction of his feeling that he was a bad person and/or had done something wrong. I assured him and he perked up. "Really?" he replied. "OK?" "Honest?" etc he was able to get out as he was able to renew his confidence in his worth.

Another episode (and I am trying to guess at meanings here from his "mumblings") had to do with either having (in me) the kind of relationship and love that is very special or needing and hoping to find that kind of social love. Some of the mumblings sounded like him not being gay ("having a love like that.")

Early this morning we spent from 7-8am dealing with something "red" and "people out there"instead of sleeping. I finally got both of us out of bed and we walked around the condo talking about the snow outside the windows and how cold it is. He finally settled down and we went back to sleep.

I am concerned that I do the best for Gregory and am not sure what that might be and/or if my emotions and love for him are getting in the way of intelligent decisions. I would like to believe that I am able to separate my emotional from my intellectual and that the right side will win out. I know I have friends who will "take me in hand" if I loose my perspective!

I will be talking to a Neurological Social Worker in the next few weeks and Gregory is switching to a new neurologist who specializes in Alzheimer's. (I was pissed when I recently learned that his current doctor who was a "replacement" for one who left is a specialist in MS. Good for MS but not for Gregory?)

Meanwhile I am taking a day at a time and surviving. Not necessarily "living" but at least "surviving."

A Difficult Episode

After my therapy session, I went to a neighbrohoood restaurant for a sandwich. Alaksh called me to ask me to come home because G was crying uncontrollably and he couldn't settle him down.

Luckily I was at "Pret" which is just downstairs from the condo and got back in 5 minutes. G thought he had done something terrible, was crying and saying in bits and pieces "You are going to hate me, no wait everyone, they were all there. He was very upset but naturally couldn't tell me what it was really about. 

So I got him to lie down in bed, I lay next to him and assured him: "Everything is OK. Everything is good. Everything is calm. Everything is happy. Everybody loves you." etc etc etc adding everything I could think of that was loving, peaceful, happy, and good. 

Both cats came to be with us and helped G get centered again. Gregory dozed for a while and then lie there thinking while I was working at my computer.

I chatted with Alaksh to see what was going on before the episode to see if we could figure out the triggering event but nothing out of the usual had happened. Often things are not what they seem so without needing any logic behind the cause of the episode, the bottom line is that Gregory was upset, had a tough time calming down, finally did calm down.

Moments come and moments pass. I have learned to get over the in-between. Meanwhile I am wondering about the accuracy of my use of lie, lay or should it have been otherwise?