Thoughts on End of LIfe

Writing this is no easy task. Based on having seen Lieberman residents rushed to the hospital in an ambulance, I began wondering under what conditions is this necessary?

While Gregory was still sentient, he and I decided that we wanted to be cremated, not buried. We also decided in the event of stroke, heart attack, catastrophic illness, etc ... "no heroics," "no resuscitation," "pull the plug" if there is one if quality of life is not available.

But how does one decide on quality of life (QOL?) Gregory's QOL today is very low compared to before the Alzheimer's, but there still is quality! He is still enjoying his narrow life, feels safe in his new community at Lieberman, is eating well and enjoying the food, laughs and gets silly, is communicating somewhat if you know what to listen for, sleeps well, likes listening to music and watching TV, is healthy and not in pain.

So for now, lets leave him "plugged in" since he is plugged in by himself and not ill or on a machine or suffering. But with Alzheimer's it will get worse. Much worse unless death takes him sooner rather than later. Mental/ emotional duress and pain is much more difficult to measure but I believe I will know when that time comes and at least we will be able to control it with medication.

Being in charge of making decisions like this for another person is overwhelming. My decisions are and will always be made with love and only with Gregory in mind, not any suffering I may experience as he fails. But none-the-less deciding that a person should end their days in a drugged stupor is difficult. Luckily the nursing staff at Lieberman is thoughtful and well informed and have advised me well so far.

Gregory's latest round of increased medication, is Risperdal. It is a antipsychotic medicine that works by changing the effects of chemicals in the brain and is used to treat schizophrenia and symptoms of bipolar disorder as well as irritability in children with autism. While it is not approved for use in conditions related to dementia, like many other drugs, it serves dual purposes even though dementia was not what was tested for the drugs approval.

Gregory was beginning to be uncontrollably combative, irritated, frustrated, angry, and was unable to sleep well. The Risperdal, as I was warned, caused him to be lethargic and unavailable emotionally/ socially for two to three weeks until the dose was balanced and his system adjusted.

He is now back to what I call his "former diminished self." While the drug did not bring back any abilities it did calm down most of the negative ones and that is good.

Next I need to put into writing my directions to the Lieberman staff as to when Gregory might be "rushed" to the hospital. Holding, with Gregory's permission long ago, the rights to Power of Attorney for Health (and Finances,) I am able to make life and death decisions on his behalf.

What I do not want to do is prolong his life if he is on his way home! I like that expression as it makes me feel like we came from somewhere and we will return somewhere even though I might not be able to understand under what circumstances that might be.

I especially do not want to prolong his life inadvertently, under duress of his illness, or because of the "best actions" of doctors, hospital, and medical staff.

If Gregory is working his way towards dying, I only want him to be comfortable, free of pain, and I will sit there and hold his hand or lie down next to him and snuggle until the end.

I need to think about these last things and put my end of life directions into writing. I also am aware that what I put into writing for Gregory should also be used in the event of my needing them. That's the next task.

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 tricycle.com.

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. 

Today

Today I feel:
     sad
     frightened
     lonely
     angry
     empty
     unhappy
     tired
     frustrated
     overwhelmed
   
Then I ran a very hot tub, turned off the lights, and meditated. I realized that it could be (and will be) worse, but for now OK. I realized that nothing MAJOR or DANGEROUS or INCURABLE or UNREPAIRABLE is happening or changing. I realized that the SUM TOTAL of it, almost ten years now, is what gets to me, PIECE by PIECE and at times PEACE by PEACE.

So now I am dried off and dressed. Writing. Feeling better. Thank you for asking!