Dumb Shit

Today during my visit with Gregory I attempted to give him a kiss. As I moved towards him, he said, "No!" So I backed off and then attempted again. This time he swatted me with his hand breaking my glasses.

"You dumb shit," I yelled, "Now look at what you did. I can't believe you were so careless and now my glasses are broken. What are you, some kind of retard? Fool?"

He just looked at me.

"Now I have to take these fucking glasses to be fixed and live without them for a week until I get them back," my anger elevating, "that was so inconsiderate of you and quite thoughtless. You really piss me off, all I wanted was a kiss and now look at what you have done!"

He just looked at me.

No, I didn't really say or think any of the above. The fact that he struck out and inadvertently broke my glasses was just a fact of life. Wasn't his fault. Maybe was my fault. I really wanted a kiss but sometimes his "No" means "Yes" so I tried again. Next time I will be more careful about getting in his range without protecting my glasses.

We just continued our visit as I taped my glasses together, laughing to myself at the image of a nine year old Michael who used to have to tape his glasses together more often than not, and laughing together about something else as I offered him a Tootsie Roll and popped one into his mouth.

Before I left for the day, I asked for a kiss, he leaned in and gave me one and I kissed back. It worked this time.

I also got to thinking about what I would have said if Gregory had broken them for me some 15 or 20 years ago. I probably would have been angry and read him the riot act. Or maybe not. But it makes me feel bad to think that we have had to get to this point for me to so calm about things, not to blame, to take things in stride. What really matters in life and in love is respect, understanding, compassion, and a few other descriptors.

I sure do love that man, even if I have to see him through my broken glasses.

Sad, Frightening, and Beautiful

Today at Lieberman I witnessed something sad, frightening, and beautiful.

First, the set up. Today at Lieberman we had an Oscar Previews Party. The staff wore formal gowns and heels. A few female residents wore beautiful hats with feathers or cabbage roses and a few male residents wore sport coats with a jaunty scarf tossed around the neck.. There was a red carpet to walk down and you could have your photograph taken by our volunteer photographer.

Slides of beautiful dresses, beautiful people, and previous Oscar winners over the years were shown, trailers from each film nominated for best movie were shown, all categories were discussed and residents could vote for whom they thought would win.

The first trailer was from Sharpshooter, biopic of Chris Kyle, the most-celebrated sniper in American military history. In the aftermath of 9/11, Kyle decides to serve his country by becoming a Navy SEAL.

Second, the sad and frightening. As we watched the trailer, Gregory began getting upset and his upset elevated fairly quickly. He got loudly verbal, anxiously shifted around in his wheel chair, and cried. The reaction was caused by the shooting and violence we were seeing in the trailer.

After ten or fifteen seconds of trying to calm him down, to no avail, I asked him if he would like to go out of the room. (I felt like a loving mother with a misbehaving child at the movies. Instead of expecting "self control," remove the child from the situation. ) 

He said, "Yes." 

I repeated, "Do you want to leave the room?" 

"Please," he said. 

He continued to get more and more upset emotionally as I was turning his chair around to head for the door when he picked up "Peaceful the Bear" and threw him down on the floor with such never before seen force and anger saying, "There!"

Up until then Peaceful was always loved and loving. Comforting. Watching this was amazing.

Third, the wonderful. Gregory and I hugged and rocked and I cooed calming words. He calmed down once we were away from the shooting and violence on the screen. The situation and discomfort was over and Gregory was OK again. I put Peaceful back into his lap and said, "Peaceful loves you!"

The beauty in this is that Gregory still has emotions and is able to express them. Also, it is important to note that the emotions are not unreasonable or out of control. Life has its ups and downs. It is good that Gregory is still able to experience them!

Today

Earlier today at Lieberman, Barbara died. I do not remember what she looked like but I did notice her empty place at the table just behind Gregory's. She had stopped eating some three days earlier.

And I heard that Marie was probably on her way out as well. I do remember what she looked like. She sat at the other end of Gregory's table, or better said, was brought into the dining room and placed at the end of the table.

In stark contrast to the other active, somewhat responsive people at the table (Greg, Betty, Julie, and Fred,) she spent her time in the dining room asleep, waiting to be fed, crumpled into a fetal position in her tipped back wheel chair/bed. At times she would be staring off into the distance but never responded to a "Hello" or "How are you today?" Her world was mostly limited and internal.

On earlier days, I remember looking at her and even in her disheveled condition; imagining the loving, sophisticated woman she used to be. But no more.

After kissing Gregory goodnight and on my way towards the elevator, a nurse was headed to Marie's room where family had been sitting with her all day. I asked the other nurse who was just outside the room how Marie was doing and she told me that Marie had just passed.

No matter how "far gone" some of these residents may be, or how angry and non-communicative, I cannot walk by a fellow human being in the hall and not smile real big and nod my head or say, "Hello." In turn, over time, some of the residents regularly now smile at me and say hello.

When in the dining room and someone needs help, if I know how to help without getting in the way and for example only if I know what to do, like getting thickened juice for someone who needs it to be thickened so they will not choke when drinking, I have to help. When Freddy is upset and cursing, I hold his hand and he holds my hand back and settles down.

My love for Gregory continues to grow, my expectations for him now are in the present moment and mostly in line with his abilities and not my hopes and fears for the future, and my love of fellow humanity continues to be tested and stretched. There is such great love and beauty to be experienced at Lieberman.

I grief and am also grateful for Barbara's and Marie's deaths.

Update

RG,
Hi. Greg continues to settle in. I go every day to visit but only for an hour or two. I am hard at work learning my new role as secondary caregiver. They are getting to know him and how to provide for him. He is content and "spends his day." To be with him is to realize that he is a very different man than he was before the psychotic episode. He is really living in the moment and is happy with that. Today we visited with his companion Alaksh and G was happy to see him. We set up a desk for him, stocked his mini-refrigerator, assembled two lovely lamps - one for the desk and a matching one on his night stand. I am creating a refuge for him but mostly for me and his visitors away from the Fellini environment that is any nursing care center. Day by day...

Fondly,

Michael

Update 1/09

Sorry (not really) that I have been absent on the BLOG but it has been a hectic time since the last post on Tuesday.

Gregory has been in a regular room at Evanston Hospital with a "sitter" since Tuesday. He seems more calm but they are still working on leveling out his sedative drugs. He is eating well and sleeping well. Yesterday and today he acknowledged my presence, and responded to my "I love you's. He has been cooperative with hospital staff. (Who have been wonderful.)

I believe I have found a great place for him to move to for an assisted living situation. Been on the phone and making decisions until I forget who I talked to and what we said.

Made of list on the computer of all the important information I needed to remember and have as reference and forgot it at home when I went to visit him this afternoon. Oh well. At least it is all down and in one place.

Will keep you in touch with our progress and more details.

Meditation: Round 2: Practice 7

The Intention of today's Practice was peace and calm and healing not only for ourselves but also for the world. This in light of the Boston Marathon Bombing and the poisoned letters arriving at the offices of various senators and the White House.

Some how it felt especially good to offer the Practice to something greater than just myself. The beginning of this practice felt like what prayer should be ... and it felt good. Most prayer to me feels like a form of begging or negotiating with some old, wise man sitting in judgement, who exists outside of myself, and who controls what happens to me. I feel the most successful prayer, if I need to use that word, has to do with going inside myself having faith in knowing that the answers exist within. Today, I reached a new level of understanding about how I want to define prayer for myself.

In the part of the Practice where one deals with Emotions, Corinne suggested that instead avoiding letting the emotion distract from the meditation, we work with it.We should picture ourselves in front of a door with the emotion on the other side. When the door is opened, what form does the emotion take: a person, a feeling, a word, a place? Talk with the emotion. Spend some time with the emotion. What is it trying to say to you? What does it want to show you or have you learn? What do you want to say to the emotion?

For a lot of people, spending time with emotion is difficult. Confronting it, dealing with it, embracing it, is hard to do. For me, this time, much to my amazement my mother was on the other side of the door. She extended her arms and took me into her bosom. She told me that she knows how much sadness I hold in my heart and what a huge responsibility I have on my shoulders supporting Gregory through his difficulties with Alzheimer's Disease.  She asked me to let her help me carry my load and to support me. The experience was quite beautiful and reassuring.

This was the last Practice in this series of meetings. I have decided to take a month off and then look at joining the next session. I will miss the weekly "escapes" but can listen the recorded MP3's that Corinne sends us of each Practice if and when I need to. I owe her so much for the calm, tranquility, and lessons she has helped me work through using Yoga Nidra.

http://www.corinnepeterson.com

Joyful Heart

Noticed that recently I have been in a good place. Not sure if Gregory has plateaued for the time being or if I have. I have been calm, patient, understanding, respectful. I have felt peaceful at a 9.5 out of 10 level. It feels good to feel good. Few if any apologies necessary, little if any guilt, lots if even abundant amounts of love.

Why? On one hand don't question or analyze the feelings just enjoy them. On the other hand look, learn, and grow.

Maybe things feel good because of how well our "Nobel Experiment" is working with Ken, Gregory's companion, living with us and while not needed all the time, being available 24/7.

Maybe Gregory is at a new plateau and we have learned how to deal with and accept the new challenges.

Maybe I have grown and continue to do so with the progress of my meditation and yoga classes with Corinne.

Maybe it is SPRING and the warmer weather and smell of tulips and hyacinths in the flower market air.

Maybe it is because of the renewed flow of creativity with my new endeavor at The Galleria, belonging to an artist collective, having a space in which to sell the results of my creativity, having fun with marketing and signage and display.

Whatever the reason, it feels good.

Meditation: Round 2: Practice 6

This session provided yet another round of spiral awarenesses and growth. I set as my Intention looking at the concept of CALM. 

My Heartfelt Desire on a general level was to work at approaching everything I do in my life from a place of LOVE, and specifically to approach my life with Gregory from a place of LOVE rather than sadness,anger, fear, frustration, and lack of patience.

Through the Initial Relaxation I was able to settle in very quickly. With Intention and Heartfelt Desire set I found that the Body and Breathing Sensing was peaceful and I did not get "antsy" but continued to settle into the Practice.

During the Feelings and Emotions, I chose CALM and CHAOS. It was interesting that this time my hands got into the process. When I focused on CALM I found my thumb and first finger slowly, smoothly, gracefully opening and closing. 

When I shifted my focus to CHAOS, my thumb and first finger rapidly snapped open and closed. I only became aware of these movements after I had shifted back and forth a few times. 

As I focused on these movements I could physically and emotionally sense the feeling. CALM felt calm, slow, peaceful. CHAOTIC felt chaotic, fast, uncomfortable. 

As we looked at Beliefs and I  allowed Heartfelt Desires to come to the front, the message I received was that ALL of my being present for Gregory, GOOD or BAD, CALM or CHAOTIC, comes from LOVE. 

Some of the LOVE IS CALM and makes me feel at peace. Some of the LOVE is CHAOTIC and makes me feel sad, angry, fearful, frustrated, and impatient .... but none the less these feelings surface because of the great LOVE I have for Gregory as we travel together his Alzheimer's Path. 

The CHAOTIC, uncomfortable feelings come because I love Gregory in the first place. If I didn't love him, or care, the feelings would not occur. And the fact that sometimes I am not at my best only shows that I am human and that I care enough to work at being better.

I also became aware of the fact that Alzheimer's is like a game. A game without rules. I have known this before but on this SPIRAL look I realized that being a game without rules means I have to try various approaches, take risks. 

Sometimes my behavior works, other times it does not. This does not mean that I am BAD but rather GOOD. I continue to try to find what works, what works this time and may not work next time and what may or may not return to work again.

I came away from this practice feeling light, and calm.

Meditation: Round 2: Practice 4 & 5

Just to keep track, I skipped Practice 4 because I was ill.

Practice 5 presented an interesting shift for me in several ways.

1) Previously, a day or two before our meeting, I would think about possible Intentions and Heartfelt Desires. This time, I decided to wait and see what "arrived" as I was settling in and getting into the meditation.

2) Another thing that I am more aware of is a "spiraling" of lessons with each new appearance bringing a deeper, more coherent understanding of the idea, emotion, experience, etc that presents itself.

3) During the period of my deepest calm, I became aware of what I would describe as Black (visually) but more An Absence (emotionally & intellectually.) Things would come and go without disrupting my meditation.

At one point a man showed up, I acknowledged him and continued my meditation without needing to know who he was, or what he wanted, or what he represented.

Another time a beautiful, sweet, pink fondant ribbon swirled in my Black, maybe because it was also my birthday and I was thinking of cake but it didn't matter I continued my meditation.

4) At times one needs to pause and enter the moment as it presents itself for lessons to be learned, but other options include setting it aside to deal with at a later time, or deciding that it is not important to deal with the distraction at all and recognizing it for what it is: a distraction.

During Practice 5 Corinne decided to spend a lot of time focusing on the body, energy, and health. While I did "scan" my body and reaffirm my excellent health, I did not end up staying with Corinne's guidance but rather revisited the concept of Essential Self which Corinne had mentioned in her opening comments.

She talked about the difficulty some people have in looking closely at their Essential Self, that self which is closer to being in touch with the universe and away from one's experiences, societal agreements, religious figure and parent pronouncements. In other words free from any biases, real or imagined, true or not, that tend to color who we are, what we think, and how we approach our day to day lives. Our PURE ESSENCE.

In the past I have had trouble focusing on my Essential Self, knowing it exists deep within me but somehow not being able or comfortable enough to dig down for a close look. In relation to the Essential Self, this time I revisited a Triumvirate of Self that I have been aware of, fine tuned it, and added the Essential Self as a fourth level.

I started out with my Public Self which I allow everyone to see, my Private Self which I only allow close loved ones to see, and my Secret Self which only I know about and which I would never share with anyone.

This understanding allowed me to arrive at the fourth self or Essential Self, as defined above. It was easier to look at my Essential Self without fear or difficulty when seeing it on this Continuum of Self from most external and visible to most internal and sacred.

Each time I experience a Mindful Meditation Practice, Yoga Nidra, I seem to arrive at a new place of comfort with myself, my relationship with Gregory, and with my world. Time well spent.

Last Night After Today

Gregory and I discussed the difficult day we/he had. He was calm again and I was able to say, "Well, tomorrow we'll begin again." I found myself thinking not the sad or difficult or hopeless thoughts that often follow bad days but rather ... "I'll try to do better again tomorrow." This was a sign of growth in my thinking. Then today this came across from Abraham: 

The Case of the Missing Strawberry Shortcake

I am sure that some of this has to do with my own disappointment. I continue to tell myself, "Don't take it personally." But I take it personally. I can only imagine how he must have felt but for me I tried to do something nice for him and it only caused more problems. I keep trying.

The other day I planned to make us a nighttime treat. After dinner I made a batch of baking powder biscuits. Then I plucked and sliced the strawberries, sugared and lightly watered them to bring out their juices, and gave them a partial mash. Finally, everything was set aside for later.

After dinner we watched some TV then went into the kitchen together to assemble our dessert. G sat on the stool and watched as I sliced the biscuits and placed them on a plate, topped them with strawberries, and loaded the creation with lots of whipped cream. Kiddingly, Gregory used to say, "The only reason for shortcake is to be able to have lots of whipped cream."

I picked up my plate, pushed the other plate towards him saying, "Bring yours," and headed back to the TV room. A few minutes later (actually a few to many minutes later) Gregory arrived with the baggie of extra biscuits that had been set aside for breakfast.

"I am confused, aren't these too many?"

"Those are for tomorrow. Your strawberry shortcake is on the counter in the kitchen," I said amazed at where a short circuit of his brain had taken him. He had watched me assemble, he saw me pick up my plate, he had heard me say "Bring yours" as I pushed it towards him, but none-the-less he showed up carrying a baggie of leftover biscuits announcing he was confused.

At times like this my brain goes numb with disbelief as I struggle to interpret what had happened, remain calm, figure out the next step, still trying not to just do it for him. Maybe I should be grateful that he knew he was confused. Sometimes he doesn't realize he is confused and behaves as if he knows what he is doing.

So he went back to the kitchen to look for his strawberry shortcake and was gone again for quite a while. Waiting is difficult for me but I still believe that it is important to allow him time to solve his own problem. Sometimes he is able to do so.

Finally I got up and went to see how he was doing. I found him looking around the kitchen not knowing what to do. By then he had probably forgotten where his strawberry shortcake was, the kitchen in his mind must be a HUGE COMPLICATED place, and maybe he had even forgotten why he was standing there.

I pointed out his plate and he said something like, "Oh that was easy." 

For him, maybe. For me, devastating.

I know, I know. You are probably thinking why didn't I wait until I was sure he picked up his plate? Why didn't I just bring his into the TV room as well? Why didn't I just go back and get his for him? Why didn't I just do all this calmly without taking it personally, letting it diminish my good intentions, causing my mind to go numb, bringing a few tears  of despair closer to the surface? That's easy for you to say.

At least this time I stayed calm and didn't get angry or say something like, "How could you not know what to do?" or worse. At times like this I have to balance back and forth between perceiving and treating him like he is normal and behaving and treating him according to his "current normal." Or figuring out in the field what to do next when what usually worked didn't work this time.

Not an easy job. I do get better at it. But my guess is that Gregory's decline will constantly my outpace improvement. The question is will I survive to outpace his Alzheimer's? Bon appetite!

A Technique

These ideas are taken from The Diamond Cutter: The Buddha on Managing your Business and Your Life by Geshe Michael Roach and Lama Christie McNally. Yes another "self help" book. But the concepts discussed within have made sense and have been working for me. The book was recommended by my nephew Mark and I appreciate him for it.

One meditative activity the book talks about is called "Setting the Day with Silent Time." This is my version of setting the day. It actually starts the night before as you are going to sleep by thinking about the best three things you did or said or thought during that day. Then think of the three worst things and forgive yourself. Think ahead to your first waking thoughts and remind yourself to "set the day."

After you have woken up and taken care of your bodily needs, washed your face, etc, go to a quiet place in your home, sit comfortably and concentrate on your breathing. In. Out. In. Out. Deep breaths. Try to count ten of them without allowing yourself to be distracted. If you get distracted try concentrating on the next ten without distraction. It will get easier. If you would like, then try thinking about NOTHING. I continue to concentrate on my breathing but with less focus. Next think about one of the problems you are facing and think about how you might approach it differently then you have in the past. Picture the problem dissolving as you take this different approach.

For me, I have been working on being supportive and loving while in the midst the "CRAZINESS" of Gregory and my interactions which are usually informed and interpreted by his Alzheimer's. My remaining calm, clear, and helpful with a loving supportive voice that is respectful but also helpful and that does not treat him like a child or like less of a person is quite a feat and one that I am not as good at as I would like to be. PATIENCE! in other words.

So I have started "Setting the Day" with a brief meditation and then picturing how I want to behave in the above described situations. I picture myself being calm, helpful, loving, respectful, even voiced. And guess what. Today after a week or so, I began seeing results. It feels good and I am able to stay out of the "bad interaction, anger, guilt, apology" cycle and around and around. Now I will meditate and picture my being able to be automatic MOST of the time as well as forgiving myself when I am not SOME of the time.

Does any of this make sense to you? Try it. Buy the book. Read it.

Why?

You are not invited to answer this. Most people do not comment anyway and this time you are off the hook. This is a rhetorical blog.

The question is why am I so angry? Why do I loose my temper? Why am I at times close to raging?

Why can't I just be accepting? Why can't I just be patient? Why can't I just be calm?

Every night G reads three words he asked me to post on his night table: SIMPLICITY, PATIENCE, COMPASSION. G is and has all three. Why can't I master that?

I am forgiving and so is he!

Past the Puzzle Plateau

In a recent e-mail to our niece and nephew:

G might be past the jig saw puzzle ability phase if you were thinking of getting him one for Christmas. He sits and stares at the pieces and asks questions like, "How do I know which piece goes where?"

I just helped him finish the border on a much easier puzzle than the ones he has been doing and he has been staring at it for 30 or so minutes carefully looking at the parts of what has been assembled but didn't realize he had to compare it to the picture on the box and the loose pieces on the table.

In our discussion it then came out that he didn't realize that the pieces next to the completed rectangle border were supposed to be used to complete the puzzle. That was probably because yesterday I told him to put those pieces on the side and only find the pieces with a straight edge for the border.

He just seemed to gain some insight into the process and seems to be making some progress.

Sigh. At least I am helping him calmly instead of panicking or loosing my patience although "Take a Breath Before You Talk!" is helping.

m