PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Friday, May 31, 2013

Picture This: A play in three acts with epilogue but no prologue

The bedroom. Gregory sitting on the bench fully dressed except his shoes. Me sitting at my computer.

From my right to left - A) one foot with sock and shoe on, B) one shoe waiting, C) one foot with sock on. I would have loved to insert a photograph here but didn't want to embarrass Gregory by taking one.

I could tell that he was studying what to do next but I didn't want to jump in to help. While it pains me to see him "suffer through" figuring out what to do, I realize that it is best not to jump in too soon because that only confuses him more and frustrates me.

Back and forth he looks between point A, point B, and point C.

From my point of view I am freaked out. How could he not know what to do in such a simple, straight forward situation? Does he not know how to put on shoe number 2? Does he not see shoe number 2? Does he not see foot number 2? Does he not realize foot number 2 is ready for shoe number 2? Is he just staring at the items (feet and shoes and sox) and having nothing register? Is he waiting for something but not sure what? He seems to know something is "wrong" but doesn't know what or how to process the situation.

Back and forth he looks between point A, point B, and point C.


Finally I get involved. (I cannot remember or share with you the prompts I used to try to help him. If I could it would seem like a Comedy of Errors getting more and more complicated until we are finally discussing the nature of a shoe and its purpose, the various types of shoes, the fine art of polishing a shoe, how to scrape dog shit off of the bottom of a shoe, etc. Sometimes these conversations seem like this and/or my teacher self takes over and I find myself inadvertently trying to teach him how to do the task at hand knowing full well that we are both past the point of no return.)


Just when I am about to get up to put his shoe on his foot for him (I remained calm this time so if he isn't ... at least I am learning) when he slips his foot into the shoe, comments, "That was easy." and stands up and leaves the room. CURTAIN

PROLOGUE: None! What can I say? An empty stage.


Tuesday, May 28, 2013

See No Evil, Hear No Evil, Speak No Evil

I am pretty sure that I do not need to worry about seeing evil around the condo. Enough said.

I continue to work at being calm, patient, respectful, loving, supportive, etc with Gregory on our Alzheimer's Path, therefore speaking no evil gets easier.

The one I just became aware of having perfected is hearing no evil. That is the subject of this post.

My hearing has become fine tuned to all types of noises around the condo. This has happened in relation to Gregory's increasing need for supervision and in addition, our getting two baby kitties. Gregory's needs have been increasing for ten years now and most recently have become fairly intense.

The kitties (Emma and Gigi) were 4 and 5 months old when we got them and they are now 9 and 10 months old respectively. As you can imagine, new kitties can get into a lot of trouble, especially when there are two of them to egg each other on.

I am tuned into noises during the day, when we have music playing, at night when I am asleep. For the most part, there are three noises as well as their intensity that I am able to distinguish in relation to both Gregory, the cats, the state of the condo, and all of our general well being.

The first noise I can distinguish is OK NOISE. On hearing this type of noise, I can identify what or where it is coming from, know that the noise is safe, and know that I do not have to worry about it or take action. Examples are the washing machine changing cycles, the refrigerator dropping a new supply of ice cubes, the furnace clicking on or off, the kitties chasing a mouse (stuffed,) Gregory going to the bathroom.

The second noise I can distinguish is the NOT-OK-NOISE or NEEDS-MY-ATTENTION NOISE. On hearing this type of noise, I know that I must get up and go see what is happening to cause the noise and why. Did Gregory shatter a wine glass when it was dropped, is a kitty climbing the screen door, did the front door open and close, and who said "Oh shit" and why? If I hear Gregory shaving at 4:00am, I will get up and redirect him back to bed.

The third noise I can distinguish is the UNIDENTIFIED NOISE, which causes me to react as I would to noise number two but perhaps a little more quickly. Once on site with the noise, I can revert to my usual NOISE 1 or NOISE 2 reaction.

Also, I can distinguish the urgency of NOISES 1 and 2 and will react quickly or more slowly, with calmly or pumping blood, OMGing (Oh My God)ing or not. I used to jump up and run to Gregory for a "Oh No!" or "O Fuck!" noise, now I wait to see what happens next.

Actually, as I write this I realize that there are other types of noises in my repetroire. For example, if the buildings emergency alarm klaxon is sounding in my unit and the recorded message is instructing us to evacuate using the nearest stairway, I will gather my cell phone - wallet - keys etc, Gregory, and the cats if they are available and willing.

Then I will feel the front door to see if it is hot, and proceed across the hall to the emergency stairwell. If I can hear the klaxon faintly, I know that it is sounding in a different zone, well above our floor, and be prepared in case of further instruction from the fire department but will not take action and will remain calm.

Sometimes the kitty noises are of the nature that can be labeled playful, worrisome, come feed me, or wrestling with my sister. Different talking, different reactions.

When Gregory calls "Help," which he usually does in a calm quiet tone, I go to his aid no matter what.

When the phone rings, sometimes I answer it and sometimes I let voice mail greet the caller.

All in all, the ability to monitor my life, Greogry's, and the cats is quite beneficial to avoiding or catching problems before they get too advanced. I get a certain amount of peace of mind from this talent.

Monday, May 27, 2013

Balancing Emotions

The article "Balancing Emotions," reproduced below, helped me gain yet another insight into why I react to difficult interactions with Gregory in ways with which I am not happy and which I am trying to change.  

For this post, I want to concentrate on this particular part of the article: 

Emotions and inner patterns of behavior arise like waves of energy within us. They take the form of feelings and reactions that play out over and over again. These patterns are very habitual: a trigger comes and the pattern arises. Sometimes, we do not even need the trigger; the pattern is just there.

After 35+ years of life and love with Gregory, we have many shared experiences and have learned many patterns of interaction. Now, ten years into our Journey with Alzheimer's Disease, many or most of those old patterns of interaction have changed or disappeared. We have compensated, revised, tweaked, changed, dropped, and added to our repertoire.

Often our interactions are based on Gregory's current normal (which is somewhat crazy) but to keep our life as normal as possible, I also try to interact with Gregory like I always have. When an interaction goes awry I still react as if Gregory is normal, as if the interaction should have been normal, as if our relationship still is normal. However, he is not and they are not. So I get angry, impatient, frustrated, and at times disrespectful.

The old patterns arise like waves of energy and are habitual, but because the old normal is mismatched with the new normal, the energy is often negative. Angry energy. Disrespectful energy. Impatient energy. Frustrated energy. Confused energy. 

Even though I have worked at changing many of our patterns, many more of the old ones still surface without needing a trigger. In looking at myself over the last ten years, what I have had to do is relearn and analyze my patterns of behavior and make sure they mesh with the "New Normal" that Gregory and I are living now. 

Sometimes I am able, other times I am not. Part of the problem is that the "New Normal" will be new yet again later tonight, tomorrow, and the next day etc etc etc. I'll keep trying.

Balancing Emotions 
From: tricycle: The Buddhist Review, Spring 2013.
A discussion by Lawrence Levy, founder and senior member of the Juniper School, based on a workshop by and the teachings of Segyu Rinpoche.
Long devoted to translating traditional Buddhist teachings into contemporary idiom, the Silicon Valley–based Juniper School, led by Segyu Rinpoche, has in the past few years reached out to the general public with its accessible teachings. Here, a senior member of the school describes the practice of Balancing Emotions, one of the “four building blocks of Buddhist training” (the other three practices are Meditation, Cultivating Compassion, and Developing Insight). In March, Segyu Rinpoche, a Brazilian-born lineage holder in the Tibetan Gelug tradition, will offer a four-part video retreat on all four practices at
Balancing Emotions means gaining control over the mood and outlook we bring to everything we do. Our inner emotions have an enormous effect on our experience, often impeding our inner growth. Balancing our emotional energy can create a significant shift in our inner well-being, creating new levels of inner strength and tranquility.
—The Juniper School
One of the great insights of Buddhist thought is the central role of emotions and inner patterns of behavior in our experience. Strong cravings and emotional patterns color almost everything we do, sometimes keeping our minds disturbed for long periods and often upsetting our personal and professional lives. Although our emotions are normal aspects of experience, they can become like mental prisons. A single word, or even a look, from another person can trigger a range of emotions that consume us for hours, weeks, or longer. These inner states typically are present regardless of our outer endeavors and attainments, and they can be highly resistant to change. Wealth, fame, and other worldly successes, for example, often fail to provide the contentment we anticipated because they do little to change the emotions and patterns of behavior that govern how we feel.
Emotions and inner patterns of behavior arise like waves of energy within us. They take the form of feelings and reactions that play out over and over again. These patterns are very habitual: a trigger comes and the pattern arises. Sometimes, we do not even need the trigger; the pattern is just there. This emotional energy incites us to action, driving our mood, experience, and interactions with others. It can make us do things we do not want to do, leaving us to rationalize our behavior or to regret our actions. When our emotional energy rises, it is difficult to dissipate it at will. It needs to run its course. Consider, for example, how anger, envy, resentment, lust, and other emotions can dominate our mood and attention. Buddhist training gives us tools to bring these waves of emotional energy into balance.
To gain this balance, first we have to commit to learning about ourselves and growing. This is often not as easy as it sounds. For example, we have a strong tendency to blame problems on outer conditions—the boss, the neighbor, the friend, the economy, the family, the environment, and the like. We tend to convince ourselves that if outer circumstances were to change—if we had more money, more fun, more friends, more free time, more respect, better relationships, and so on—things would be better. However, although outer changes may help, we often give them too much weight, and we have difficulty seeing the obstacles created by the inner forces at work.
Once we acknowledge the importance of looking within ourselves, we have to elevate our awareness of how our emotions and patterns of behavior affect us. We begin to see the impact on our lives of our emotions, our inner patterns of behavior, and the inner stories that dictate how we see ourselves and the world around us. Becoming aware of these inner forces is key to changing them. Just the awareness can make a difference.
Having enhanced our awareness of our emotions and patterns of behavior, we can apply remedies that will reduce or eliminate those that cause inner agitation. These remedies include committing to a path of inner development, meditating, exercising self-restraint, and cultivating positive modes of thought and action. Buddhist training guides how to do each of these.
However, we must be careful not to suppress or bury our emotions; then the energy just finds its way somewhere else. Instead, by gently robbing negative emotional patterns of their power and by practicing positive modes of thought and action, we bring balance to our inner lives, and our minds will gradually become habituated to remaining calm, stable, and clear. 

Saturday, May 25, 2013

In addition ...

In a previous post I discussed an interesting phenomenon in which Gregory is more comfortable at times to go to Ken, his companion, for help than he is to come to me.

In that post I had wanted to, but forgot to mention that it seems very much like when a child goes to one parent with a question, doesn't like the answer, and so goes to the other parent to see if they can get a different answer. That is probably the reason that eventually when the child asks the mother a question, she replies, "Go to your father," and when the child asks the father a question, he replies, "Go to your mother."

Another interesting thing happened when we were discussing my taking Gregory to the swimming pool after Ken leaves us. I have slowly been "dropping pins" about Ken's leaving for Vanderbilt to continue his studies in psychology so that when he finally has left, Gregory will have had a chance to deal with the leaving.

When I dropped the "pin" the other day, Gregory looked concerned, worried, frightened? I asked what was the matter. "You'll take me swimming?" he replied. "Oh."

"Yes. I'll help you begin and then while you swim I'll do the hot tub or something." Gregory's worried face continued. "Do you want me to be there while you swim?"

Both Gregory and Ken agreed that Greg swims alone once in the pool and doesn't need assistance. Finally, Gregory said (or stumbled,) "Well ... then ... you'll have to come and be there. And Ken will help." In other words, Gregory wanted Ken to show me what to do to help Gregory when he goes swimming. Ironic since I "trained" Ken on what to do for Gregory. I gently reminded him of this, said that we all three could go down a few times, and perhaps that would make the transition easier.

Gregory liked this. He did comment, "You did?" in response to my comment about having shown Ken the swimming procedures. Ken was very supportive and added, "Yep, Michael showed me and I'll show him back. I am sure there won't be any problem.

CLICK HERE to see previous post. Opens in a new window.

Tuesday, May 21, 2013

An Interesting Phenomenon

I have been noticing an interesting phenomenon with Ken's living with us. When Gregory needs help with some things, he goes to Ken for that help. I do not mind but have been observing and have learned a few lessons based on my observations.

Ken is always, and I mean always patient with Gregory. I am not.

Ken is always fast on the ready to help or do something for Gregory while often I will make him figure things out by himself.

Ken will be supportive and positive while at times I become angry, frustrated, concerned, worried for the future based on an imagined, new, or periodic failure on Gregory's part.

I do not want to seem judgmental towards Ken or myself, just observant of the differences. The lesson here, however, is that Gregory TRUSTS Ken to deal with some things that he doesn't TRUST me to deal with.

For example, after hundreds of times helping or instructing Gregory on how to put on his "Medic-Alert" necklace, now I just tell him, "Just do what you can, it doesn't matter." Ken still spends the time trying to verbally tell Gregory how to put on the necklace. Other times I just take it out of Gregory's hand and put it on for him. I have never seen Ken do this.

My very "in touch niece" Colleen once drew an understanding about cats and how they will continually come back to you based on the MARGIN OF TRUST you allow them. You can discipline them or step on their tail accidentally, but they will still come to you to get pet and will purr and love you.

For example, you can hold them firmly, but when they really, really want to get down and when they show you this with their squirming, you put them down. The trust continues. You may swat the cat when it is chewing on a book in your library, but they still trust you. If you swat them all the time, however, or continue to hold them against their will, the trust margin decreases.

So my lesson with observing Ken and Gregory's interactions is that I need to be very careful not to extinguish that margin of trust which Gregory has for me, my intentions, my being here to help. The last thing I would want to do is inadvertently cause him to be afraid to come to me for help.

Monday, May 20, 2013

A Guidance System

Emotions are your guidance system, not the cause your problems. Emotions are the response to what is happening in your life. They are an indication of what you are experiencing. Like a thermometer tells you the temperature in a room, your emotions tell you about the state of your life. Therefore, emotions are a good thing that can guide you to making your life what you want it to be.

Usually one hears about guidance systems when referring to airplanes or missiles. With airplanes, the guidance system helps make sure you will safely reach your vacation destination. In shooting a missile, the guidance system helps make sure the missile hits its destination doing the desired damage.

With emotions, the guidance system tells you whether what you are experiencing is making you happy or sad, is right or wrong, is good or bad. So if you are angry or depressed or sad, that is not the problem. That is the measure of your problem. 

To make changes, you must dig deeper than your emotions (or maybe you already have) to find the cause of your anger, your depression, your sadness. It is easy to say, "I am depressed" and to leave it there, being depressed. It is as if labeling the emotion is enough. However, when used as a guidance system, your emotions help you to be armed with a better understanding of the current state of affairs of your life and you can begin to deal with the cause, to correct it if you can. 

As you make these changes, you will feel your emotional barometer change. Most situations can be changed, if not by yourself then with the help of a family member, a friend, or a trained professional. In those situations that cannot be changed, your thinking can be. While it may seem difficult to impossible, one does have that choice and that ability. 

I believe that each one of us is creating for ourselves a life that reflects how we think about things, how we see things, whether we are optimistic or pessimistic. We must remember that our emotions are only the measure your life not the cause. 

If your emotions are telling you that you are happy and that your life is good, keep up the good work. If your emotions are telling you that you are sad, unhappy, lonely, frightened, depressed, etc, then think about how to begin the process of change.

On a day to day basis, you can alter your emotions by how you think about things. If the person in line at the grocery store in front of you is giving the checker a hard time and holding up the line, it is not necessarily about you and your anger at having to wait or your disgust with the woman's rudeness.

Maybe the person can barely afford her groceries, maybe her husband is dying of cancer, maybe she just got a call that her child was in trouble again at school. If you can begin to look at the "maybes," chances are you will not be as angry with this stranger who is holding up the line as you were. Often, a person's problems are invisible, so don't take them for granted.

Even with something as severe as the diagnosis of an incurable disease; a person can change their thinking. He can spend all the time left being depressed, down, and sad or he can make the best of the time left, do those things he has been postponing, make sure he tells those who matter that he loves them, look at those parts of his life for which he should be grateful. He can live life as well as he can, while he can.

While some sayings are trite, like ...  you can change if you want to, it is all in how you think about it, if you change your attitude you can change your life  ...  they are true. Try it, you'll be surprised.

Sunday, May 19, 2013

So Far This Morning

So far this morning:

Up way too early shaving.
Didn't know how to use his shaver.
Needed help turning on the shower water.
Didn't think to put down bath mat.
Couldn't open the shampoo bottle.
Wasn't sure how to put on his belt.
When he did, missed two loops.
Had both sox on, one shoe on, and didn't know what to do next.
Buttoned his shirt but got confused on the last button.
Trouble putting his "Medic Alert" necklace over his head.
Couldn't clip on his key chain on to his belt loop.

Thursday, May 16, 2013

Wednesday, May 15, 2013

Ken the Kompanion

Haven't posted for a while. With Ken, Gregory's companion since last May and living with us since Easter, things have been going pretty well. As I have mentioned, both Gregory and I get along well with Ken and he, us.

If you missed them here are two BLOGS about the experience: It's Only Fair and Companion

Ken is easy to live with, allows us our privacy, and keeps his own. We also spend many dinners together and often times will just sit around the living room chatting. Gregory and I have learned a lot about the Japanese culture and Ken has heard a lot about the American as well as Gay cultures.

Ken has met many of our friends, has joined several parties that we have hosted, and has chatted with Roger, Scott, and Richard about their experience in Psychology as Ken will be starting his masters in Clinical Mental Health Counseling at Vanderbilt University in September.

Ken and Gregory make a good team when cleaning up after meals. A few meals into Ken's tenure with us, I smilingly suggested, "You know ... it's ... only ... fair ..." And they both finished with, "that we clean up since you cooked.)

Among other support activities, Ken sets the table, takes out the trash and recycle, helps bring groceries from the car and even helps put them away. Often Ken will pick up a few things at the close by Whole Foods or return books to the library. He brings up the mail and when I need an extra hand fixing something around the condo, his are very able.

Gregory and Ken go swimming at the pool in the building two or three times a week, go for walks, go for haircuts and manicures, and spend time at Starbucks.

Today I am just home from a week in New Orleans. Gregory and Ken spend 24/7 together very successfully and I felt totally at ease with not being home. Periodically I would send them texts with added photos of what I was doing in NOLA. A day or two into my getaway, photos of what they were doing began showing up in their texts to me.

Following is a gallery of photos from Gregory's Great Adventure:

Gregory & Ken at the beach

Gregory out on the pier

At home with a sandwich and 
soup from "Pret-a-Mange"

Gregory in the swimming pool

Gregory at "San Germaine" with
a dinner crepe

Gregory at "San Germaine" with
a dessert crepe

Tuesday, May 14, 2013

Mindfulness & Difficult Emotions

"Mindfulness & Difficult Emotions"
Tricycle: The Buddhist Review 
Spring 2013. Page 26 -28
By: Sharon Salzberg

I’ve heard some wonderful explanations of mindfulness. The writer and teacher Sylvia Boorstein calls it “awake attention to what is happening inside and outside so we can respond from a place of wisdom.” The Vietnamese Zen teacher and poet Thich Nhat Hanh says, “I like to define mindfulness as the energy that helps us to be there 100 percent. It is the energy of your true presence.” But my favorite definition comes from a fifth grader at Piedmont Avenue Elementary School in Oakland, California. 
In 2007, the school launched a pilot program that offered kids five weeks of mindfulness training from a coach who visited classrooms twice a week, leading 15-minute sessions on how to have “gentle breaths and still bodies.” The students trained their attention by focusing on their breath and noting the emotions that arose. The coach also asked them to cultivate compassion by reflecting—“taking a moment”—before lashing out at someone on the playground. “I was losing at baseball and I was about to throw a bat,” one boy told his class, according to The New York Times. “The mindfulness really helped.” 
The reporter asked another boy participating in the program to describe mindfulness. It’s “not hitting someone in the mouth,” he said. 
Giverny III
His answer is wise, wide, and deep. It illustrates one of the most important uses of mindfulness: helping us deal with difficult emotions. It suggests the possibility of finding the gap between a trigger event and our usual conditioned response to it, and using that pause to collect ourselves and change our response. And it demonstrates that we can learn to make better choices. 
“He doesn’t know what to do with his energy,” the student’s mother said at a parents’ meeting. He was, she explained, usually quick to strike out when he was confused or frustrated. But mindfulness training was changing that pattern. “One day after school he told me, ‘I’m taking a moment.’” 
This is just what the practice of mindfulness helps us remember. Working with emotions during our meditation sessions sharpens our ability to recognize a feeling just as it begins, not 15 consequential actions later. We can then go on to develop a more balanced relationship with it—neither letting it overwhelm us so we lash out rashly nor ignoring it because we’re afraid or ashamed of it. 
We learn a lot in that middle, mindful place. We begin to discover that, like the Oakland schoolboy, we can always take a moment—to re-center ourselves in our bodies, acknowledge what we’re feeling, spot our habitual reactions (whether that means erupting when we’re frustrated or silently sulking when we feel criticized), and perhaps decide on a different course of action. 
When I first began my meditative practice I was only 18, and although I knew I was deeply unhappy, I wasn’t aware of the separate strands of grief, anger, and fear roiling inside me. All I felt was a single, seemingly solid bank of sadness. Then, through meditation, I began to look within more clearly and detect the various components of my sorrow. What I saw unsettled me so much that I marched up to my teacher, S. N. Goenka, and said accusingly, “I never used to be an angry person before I began meditating!” Of course I was hugely angry: my mother had died; I barely knew my father; I barely knew myself. When I blamed Mr. Goenka, he simply laughed—then reminded me of the tools I now had to deal with the difficult feelings I used to keep hidden. I could begin to forge a different relationship with my emotions—to find the middle place between denying them and giving over to them—because I had acknowledged them. 
Mindfulness practice isn’t meant to eliminate thinking but aims rather to help us know what we’re thinking when we’re thinking it, just as we want to know what we’re feeling when we’re feeling it. 
Mindfulness allows us to watch our thoughts, see how one thought leads to the next, decide if we’re heading toward an unhealthy path, and if so, let go and change directions. It allows us to see that who we are is much more than a fearful or envious or angry thought. We can rest in the awareness of the thought, in the compassion we extend to ourselves if the thought makes us uncomfortable, and in the balance and good sense we summon as we decide whether and how to act on the thought. 
Meditation is like going into an old attic room and turning on the light. In that light we see everything—the beautiful treasures we’re grateful to have unearthed; the dusty, neglected corners that inspire us to say, “I’d better clean that up”; the unfortunate relics of the past that we thought we had gotten rid of years ago. We acknowledge them all, with an open, spacious, and loving awareness. 
It’s never too late to turn on the light. Your ability to break an unhealthy habit or turn off an old tape doesn’t depend on how long it’s been running; a shift in perspective doesn’t depend on how long you’ve held the old view. When you flip the switch in that attic, it doesn’t matter whether it’s been dark for 10 minutes, 10 years, or 10 decades. The light still illuminates the room and banishes the murkiness, letting you see things you couldn’t see before. It’s never too late to take a moment to look.