Happy New Year

What a better way to start the New Year than with this:

2012

HAPPY NEW YEAR!

New Language

Gregory has created a new language out of his Alzheimer's.

Whether it is too cold or too hot in the condo he asks for "another tick" on the furnace.

For breakfast he likes "thin thins" with honey meaning the new thin round bread that has appeared in the grocery stores.

He let me know "Michael, Ding, Ding, Ding" happened in the kitchen as the oven reached temperature and we could begin making some cookies.

Various waves of the hands try to narrow down his message.

When he needs help with the computer he announces, "It happened again!"

Showing is always easier than telling, which ironically is the professional writer's mantra.

"Over There" represents everywhere that isn't here. For example, he is looking forward to going over there (Mexico,) he saw a neighbor over there (in the lobby,) he wants to go over there for dinner (a restaurant we haven't been to for a while,) we need to call one of his friends over there (in California? ... John?)

"You know!" said urgently after his having tried to explain something but not being able to come up with any words at all, just huffs and puffs and hems and haws means, "Michael, please tell my story for me."

Sometimes we both get the giggles at the new language he comes up with and sometimes I cry.

Silence

Today's Daily Word addresses something I continue to work on in my relationship with Gregory. In an effort to "be his words, be his story, support his actions" I find that I continue to jump in too soon. If given a enough time, if given silence, he often is able to formulate his words or work out an action on his own.

In an effort to protect him, often I jump in too soon and often my help only serves to distract and confuse him. Often it frustrates and angers me. It is painful for me to watch him struggle, especially when I can tell from his face and from his posture that he is indeed struggling. Even more difficult is that when he cannot come up with what he was trying to say or do, he is not able to move to "Can you help me?" Just silence. Painful silence. So often I have to jump in.

Another situation that I continue to work at monitoring is "When do I need to correct him?" The guideline is "Are babies dying?" Translated this means does the fact that he is not doing something correctly matter? Is he in danger? If not, I try to say nothing. Silence. But often I am already giving feedback when I realize to late, "Not necessary." Silence would have been better.

So recently, after I "mess up" I repeat silently to myself, "Say nothing. Do nothing. Say nothing. Do nothing." Besides helping me calm down I am trying to bring my actions to a higher conscious level so I do not react, but rather act ahead of time. Act before I speak.

At the same time I am carrying on an argument with myself because at times I must "Say something. Do something." It is not fair to him or to myself to always say or do nothing. So I have been looking for a better mantra.

With this Daily Word, I have that mantra:  SILENCE. Working at being silent (and repeating the word "Silence" over and over again) will give me time to think, while waiting to see if I have to jump in. This is the answer to how I might handle myself when these occasions arise.

At least for now. At least until the game rules change again. I'll let you know how it works.

(As I usually do when sharing a Daily Word post, I have revised the thoughts to reflect my spirituality.)

About Daily Word | Pray | Affirmations | Articles | Search Archives | Subscribe | Shop | Donate Saturday, December 24, 2011 SILENCE In the Silence, I am strengthened and renewed. Before I begin my day, I rest in the silence of the morning, close my eyes and breathe in deeply. A smile comes to my lips as I feel the loving presence of God life. In silence there is power, depth, beauty and strength. I can never be alone, for God love and life dwell s within me. Silently, my prayers thoughts go forth to bless send love to a dear one, and silently, I meditate upon the joy within. It is in the silence that God strengthens my faith in life and in myself and fills me with courage. In the silence are born new aspirations, new inspirations and renewed faith. In the silence, I walk and commune with the my indwelling Spirituality and rest in God's life's sustaining love. Peace, be still. I am in the presence of the Almighty. In glorious wonderment I travel on holy ground. I experience myself both inward and outward, during calm times and during turbulent times, and know that both are signs that I am alive as I travel life's path and that all is well. Be silent, all people, before the Lord.--Zechariah 2:13

I Don't Mind (Really!)

We, Gregory and I, have a collection of seven (count them) seven Miniature Christmas Trees (approx 6" to 8" tall) decorated with miniature ornaments. They are lined up against the wall on the dining room table (which is in the living room) currently Christmas Central (usually Gregory's desk.)

We have had a number of small parties (more at homes) and one large party (friends, neighbors from the old neighborhood, and neighbors from the condo where we currently live) this holiday.

At these parties, Gregory gets to tell his stories (with great difficulty) and he enjoys being able to share. Usually I tell his stories but there are a few (a very few) that he is still able to tell (wave his arms at and stumble over.)

One of his stories (when we have company over) is to tell about (and show) his recent oil stick paintings. This is a new skill added since he has lost so many (like playing his piano or doing cross word puzzles.) He takes great joy in painting (loves his mentor artist Nancy) and enjoys sharing with our friends and family who sometimes offer to buy one (but he isn't ready to sell any yet.)

Another story is to point out (show) the line of variously sized and colored, heavy mercury ornaments which are hung (artistically) along the fire sprinkler pipe which runs across the living room (which is really The Great Room or the Loft Space.) He calls it (when he can remember the name) his Christmas Pipe.

Another story popped up recently (which was a surprise to me) but which I let pass. He was showing a guest the miniature Christmas Trees lined up on the desk/table and pointed to one saying, "This is my favorite. They (the miniature ornaments) are very old and belonged to my Grandmother. I love these the most and will never let them go.

I don't mind. Really I don't. Turns out that the miniature Christmas Tree with faded, antique, tiny round, multi colored ball ornaments to which he was referring (which Gregory and I have collected over the more than thirty five years we have been together) has now become something inherited from his Grandmother and which he will never let go. I was surprised. I am sad. But I understand (and I don't mind.) Really.

Holiday Time

(Disclaimer Below Entry)

We always look forward and are excited about the Christmas season. We decorate the house early and take it down late. We throw a large party (this year over 40 attended,) and a number of smaller ones. We bake cookies (this year over 20 dozen,) wrap presents (for family and support service people and just a few for each other,) go to the Christmas Kris Kringle Market downtown, have a few theater engagements, and eat out a little more often than usual. 

On Christmas Eve we cook a special dinner at home and watch the George C. Scott version of "A Christmas Carol, open our presents, have cookies and tea. On Christmas Day we go to friends for dinner. We have friends in for New Year's Eve and look forward to a visit from our niece and nephew for a late Christmas sometime during the middle of January.

Disclaimer: It used to be WE, now it is I because Gregory is no longer able to help with planning, preparation, execution, and/or cleanup of all these events. I do get tired but also get extra sleep. I do get overwhelmed, but also try to keep the details simple. I do have my annual Christmas Cry but cheer up pretty quickly. 

In all, it is well worth while because Gregory still enjoys the festivities and even thrives on them even though it is a little more difficult for me during the down time when he seems a little more confused. But the holidays still work for us so WE (read I) will hold on to them for as long as possible and simplify them as we go along and as necessary. Merry Christmas to all and to all a good night.

In The Moment: A Story in Four Acts with A Prologue and an Epilogue

PROLOGUE

You had to be in the room to appreciate what happened. You had to BE either Gregory or Michael to REALLY appreciate what happened. I can speak about what I experienced but can only imagine what Gregory experienced. When asked, the best he was able to reply was, "It was all of it."

ACT I: SETTING THE STAGE

Aaron, our "guest" researcher working on his doctorate dealing with a study of caregiving partnerships, joined us for the evening not only for further observations for his dissertation but also to help make Christmas cookies and to join us for dinner. He brought a bottle of wine. Red, full bodied, delicious.

Gregory and I have come to look forward to Aaron's visits and find him good company on many levels. He is a affable person, intelligent, and actually wants to hear what we (I) have to say about living with Alzheimer's.

I qualify here that Alzheimer's is an easy to use general term. Putting one's medical finger on exactly what is going on with Gregory and labeling the type of dementia is not obvious. Perhaps Frontal Lobe Dementia is more fitting based on my observations and limited knowledge of dementias. But most people know Alzheimer's and using the "label" makes it easier to discuss as well as easier to get medical services and support.

On my part besides having an evening's company, considering Gregory's difficulty with language, I find myself more and more in need of intelligent conversation outside of our relationship. Aaron helps provide this. So we discuss not only Alzheimer's but also world politics, the weather, Gregory and my relationship, our history, or families, etc.

ACT II: THE HISTORY

Gregory was quite animated as we talked about his family and his early years. At one point he excused himself and returned to show Aaron a photograph of his parents, Helen and Ed. Gregory took piano lessons, which while forced by his mother, he adored.  Helen was a concert harpist and music played an important role in the Maire Family. When he went to college he gave up piano, probably in reaction to his mother's musical attentions and also in a move towards youthful independence.

He kept in storage the piano that had been passed on to him by his mother, reclaimed it when he and I first knew each other, and then passed it on to his niece Renee when we purchased a magnificent new Grand Piano for our first home together. I remember him "auditioning" pianos at the piano store with Helen and Renee in attendance. One piano with a beautiful voice and the perfect action found its new owner. Gregory was dedicated to his piano, practiced, studied, and became close to a concert pianist himself.

One day he sight played one or two pages of Chopin's Ballade in G Minor, Op. 23. We both fell in love with it and at my encouragement he decided to "tackle" the piece and learn (memorize) it. He probably spent five years doing so. The ten minute piece is very difficult and complex and the kind of music that someone like Artur Rubinstein would play as an encore after a magnificent concert at Carnegie Hall.

Slowly but surely, Gregory perfected the piece. He would always joke that, "You must be tired  of listening to me "bang" through this." I always assured him that I thoroughly enjoyed listening to him practice and often would lay on the sofa and with my eyes closes, listen and drift. Finally, Gregory performed Ballad at a Musicale at friend's Chuck and John's home where, as was done in the Victorian Era, our "Gay Family" shared their performance talents for an evening's entertainment.

Since Gregory decided to sell his piano over five years ago now, being unable to play due to Alzherimer's, he has been content to listen to music on CDs. Only two or three times in the five years has he mentioned that he missed being able to play. We listen to music every evening during dinner, more often on the weekend. We have listened to our beloved Chopin Ballad in G Minor, Op. 23 many, many times. I find myself whistling it when we are in the car, Gregory joins in, and we laugh and wonder why it comes to mind at any particular moment.

ACT III: THE LEADUP

Back to Aaron's visit. We chatted, had coffee and Christmas cookies which Gregory and I made a few days earlier. We laughed, we shared. We listened to Christmas music and made a batch of Vanilla and a batch of Chocolate Walnut Ball Cookies from my mother's recipe. Over a gross of cookies were made. We cleaned up and messed up again as I started dinner. Aaron, Gregory and I worked as a team throughout. I was chef, they were the sous chefs. It was fun and we worked together smoothly.

At dinner we talked of Gregory and my past, our present, a lot about Aaron's life, and about things worldly. We got back onto talking about Gregory's family and spent a lot of time talking about his childhood and his parents. When I say "we," you must understand that I mean "I." Now-a-days I am his words, I am his memories. But I know him so well after thirty five years that he might as well be the one talking. He nods with acknowledgement as I tell his story and does join in now and then with carefully thought out and carefully worked out additions.

Through the evening Gregory had shared some of his activities with Aaron; his paintings, a book he was reading, a jigsaw puzzle he is looking forward to working on after the holidays, a photograph or two. Mostly his sharing was by showing. With great difficulty she shared a memory or idea or two using words (with my help.)

After dinner, suddenly Gregory got all excited about something he wanted to share with Aaron. He couldn't organize his words so our "guessing game" began. Again, knowing Gregory as well as I do and based on the shape the evening had taken so far, I was able to figure out that he wanted me to play the Chopin Ballad that he had learned many years ago so Aaron could hear the magnificent piece.

As the music began, Gregory and Aaron were sitting on their stools by the kitchen island and I was sitting across from Gregory on a living room chair.

ACT IV: THE EVENT

Chopin's Ballade in G Minor, Op. 23 starts out slowly and quietly and then builds and builds with amazing complexity and crescendo.  We all listened quietly and almost as soon as the music began, Gregory closed his eyes and began "remembering" the piece with his hands and body. Aaron observed, I watched. Gregory rocked with the music. His body reflected the peeks and valleys as well as the alternating calmness and intensity of the music. When the notes were high, he moved his hands treble-ward. When the notes were low, he moved his hands base-ward. When there was a trickle or wave of notes from one height to the next, Gregory's fingers would waggle in response. When there was a pause or breath, Gregory would pause or breath. When there was a strong point in the music, he would punctuate it with his finger or fist.

His eyes closed the entire time, although sometimes I could see the whites of his eyes as they fluttered, Gregory was no longer in the room with us. He was reliving the piece. He was sitting at his Grand Piano playing the piece. The look of concentration on his face, the look of joy, of bliss, of rapture told me that he was experiencing each note as he had spent so much time practicing and learning to play them.

I had to look away often because I was overwhelmed with emotion. I stifled sobs, I shed tears, I breathed deeply to avoid lamenting aloud and disturbing Gregory's reverie. Having regrouped myself, I would return to watching, with amazement, Gregory's performance. Then I would have to look away again, my eyes cold with evaporating tears, my body and lips quivering with the experience. Aaron sat quietly and watched ... and observed ... and took notes.

As I watched, I recalled the first time Gregory performed the piece, some fifteen or twenty years earlier at Chuck and John's Musicale, after having struggled and spent so much time learning it. I had to leave the room because I could not stand the suspense and perhaps terror of wondering if Gregory would be able to make it through the piece and not panic as he admittedly did sometimes in front of an audience.  The performance was a spectacular success, note perfect. I think it was really a high point in his life.

This time I knew I would not leave the room, not only with the suspense and perhaps terror of how Gregory's current "performance" would end, but with the suspense of how I would survive it. When the last note was hit, and its vibration had ended, in the silence Gregory opened his eyes and began sobbing. I gave in to my emotions and let the tears and sobbing out as I got up and went to him. We hugged each other, shaking and sobbing and me whispering, "That was wonderful. It's OK. That was wonderful. It's OK."

EPILOGUE

Aaron went and got a box of kleenex from the guest bathroom and all three of us dried our eyes. Gregory and I had gone through an amazing experience. Aaron had not lived it as we had, but none-the-less was moved to tears. Later he asked, as the researcher in him dictated, if we could explain what happened. I was still so emotionally charged that I told him I didn't want to talk about it right then but certainly would be writing about it and would share that with him. Gregory's response was, ""It was ... (searching) ... all ... (searching) ... of it."

For me describing the experience is pretty clear. I felt that I was watching from the outside, something very precious and sacred going on in Gregory. I was feeling great joy and love watching him relive his moment of glory. I was amazed that he could remember each note, each bar, each section of the piece. It felt like the "old Gregory" was back with me and back for himself, for that brief ten minutes.

As well, I was grieving all that has been lost in these eight or so insidious, confusing, frustrating years of Alzheimer's. I was celebrating all that is still with us even through these trials. I was filled with sorrow as strong as my joy. I was able to acknowledge for myself that I have been able to help him to feel happy, content, purposeful, and safe through his losses. I was feeling guilty and renewing my resolve not to be impatient, frustrated, and at times mean and disrespectful. Most of all, there was something so magical, and strong, and spiritual about sharing this experience with this man whom I love more than life.

As far as what Gregory was experiencing, I can only surmise. He certainly was in the moment. Alzheimer's did not exist. He was in and of his music. He rode each note as Chopin has written them and as he had practiced them so long ago. He definitely was no longer in the room with us, he was in the music.

Reflecting how Gregory has been dealing with his cognitive losses, I believe that his tears after his "performance" most likely showed how joyful he was to once have been able to play his beloved piano, not grief of having lost the ability. I believe that for at least ten minutes, his entire life - childhood to manhood - became one unified joyful, celebrated memory without any of the frustrations of Alzheimer's and ... he cried with that joy.

Beep Beep Beep

Very often Gregory backs himself cognitively into a corner and once there cannot get out my help.

Very often I back Gregory into a corner and once there he cannot get out by himself or with my help.

I must be more careful to "signal when backing," BEEP BEEP BEEP.

Still I behave...

Still I behave as though Gregory does not have Alzheimer's. I get angry when he gets dumb. I take offense. I refuse to believe. I am rude and disrespectful. Maybe today I will change.

Today he wasn't able to "Please get me a kitchen towel from the guests bathroom." He confused the difference between "Yuck" garbage and "Recyle" garbage again. He tried to grab the hot cookie pan thinking he was helping. Couldn't look at a Lego block pattern, find the piece, and put it in place. Uses "him" when he means "her." Uses his hands more and more to facilitate his knife and fork. He forgot the steps involved in drying the dishes. Etc, etc, etc.

I did two things correctly today.

When he couldn't do the Lego blocks, I sat down next him and did them myself talking through each step. Later he said he had fun helping with the Legos.

We made Gregory's Great Grandma Barbara's Christmas Cookies this afternoon. He  "remembered" them a week or so ago (talking around them until I was able to guess what he was talking about) and asked if we couldn't make them this year.

I bought the ingredients, laid out the cookie trays. I read the recipe and figured out the directions. I measured. I boiled. I sifted. I added ingredients. He mixed the dough. I formed the cookie balls. I pressed them with a glass. I put them in the oven. I timed them. I took them out and let them cool. I put them on the cooling rack. I piled the cool cookies on one tray. I put them in sealed container with sliced apples to cure until Christmas. I cleaned up after. He dried the clean items (after I talked him through how to dry.) WE had a fun time. I am tired. He is happy.

Coffee Time

I have started Gregory on a cup of coffee every night at around 5:00. He never liked coffee and was more a Tea Person. The "Coffee at Five" has come about due to serve several purposes.

First, very often at sundown, people with Dementia go through was is known as "Sundowning." Why this occurs is not fully understood but maybe their mood and discomfort may be caused by an internal clock, by the change in light, by reflections in the window without the ability to discern "inside vs out."

Gregory automatically started the routine for himself of spending an hour or so reading or doing a jig saw puzzle that just happened to coincide with sundown. Because he is occupied, "Sundowning" does not seem to be a problem for him.

Second, I read an article a while back about the importance of caffeine in relation to dementia, and recently saw in November 2011's Weight Watcher's Magazine the following:

"Caffeine may do more than increase alertness. In fact, new research conducted by the Florida Alzheimer's Disease Research Center and the University of South Florida is showing promising results regarding caffeine and dementia - at least in animals. Mice bred to develop the rodent equivalent of Alzheimer's disease improved when given 500 mg of caffeine (about five small cups of coffee.) Although the research is still in its early stages, lead researcher Gary W. Arendash, PhD, is working toward determining if his findings may be of use to people at risk for the disease as well as for those who already have it."

Having seen this information previously (and now reinforcing to see it further confirmed) I introduced "Coffee Time" to Gregory's five o'clock routine a couple of years ago. Now "Coffee Time" around our home is important for both of us. It helps Gregory through the possibility of Sundowning, might help offset some of his dementia, and he as come to enjoy the flavor of coffee (with a few cookies.) It also helps give me the needed energy boost before I begin to set up for, cook, and clean up from dinner.

Apple Pie Too (2)

A response to the "Apple Pie" post from our niece Colleen. "Funny but not. But it made me think of a friend of ours recently who flew Delta to FL.  The attendant asked him if he would like a snack and he said, “What are my choices?”  Her reply, “Yes or No.”

Apple Pie

An old old story between Gregory and myself is about going into a diner and asking the waitress what kind of pie they had. She replied, "Yes."

A variation on this story is, "What kind of pie would you like Cherry? or Apple?" with a reply of "Yes."

Yesterday in the bathroom, I told Gregory that he should move his pills closer to his sink  so he didn't forget to take them. He replied, "OK." and left the room.

Reality

What they believe is their reality. Not yours.
Not the expected. Not the accepted.
Not the usual. Not the same day to day.
What they believe is their reality. Not the world's.