Mindful Presence to Ease the Dementia Journey

(cross-post from Huffington Post)

Imagine a marathon you did not sign up for, and yet, you are told you have to run the race until the end. To add to the challenge, you are to carry a heavy load on your shoulders, and the load will get heavier and heavier as the race goes on. This is what the dementia journey is like for most family caregivers... Keeping with the marathon metaphor, what is needed is a way for caregivers to develop the strength that will be required of them over the long run. The Presence Care program is a new, integrative approach that combines mindfulness and compassion practices with understanding of the dementia experience. Its goals are to ease care burden and stress, and to help foster greater well-being for both caregivers and the persons in their care. It goes like this:

1. Understand dementia.

The more we can learn about the disease, the better equipped we are to understand what the person needs and why they are behaving in certain ways. Dementia affects different parts of the brain, each responsible for different cognitive domains such as memory, language, behavior, executive function, or movement. Not all dementias affect the same domains, and we need to know which ones are impacted and what that means in terms of the person's interactions with us. For instance someone struggling with executive function will have trouble initiating tasks and will be dependent on others to get engaged into activities. We also need to guard from our tendency to position the person with dementia as less able than they really are. Many abilities are preserved throughout dementia. In many cases, emotional intelligence is even heightened.

2. Practice mindfulness.

Using Jon Kabat-Zinn's definition, mindfulness is being fully aware of the present moment, on purpose, and without judgment. The validity of mindfulness as a powerful stress-reduction tool is no longer in question. That benefit alone makes it worthwhile for stressed out dementia caregivers to undertake mindfulness practice. The other, equally important reason has to do with the way in which mindful attention allows us to notice what is happening moment to moment, that may impact the person's experience. What do we bring into the situation? What do we hear? What do we see? What is the person telling us with her body language? Armed with that awareness, we then have a chance to act in a way that is most beneficial to the person. Of course, remembering to be mindful does not come naturally. We need to train our mind to come back to the present moment. This is done by setting time aside to practice every day. Even only five minutes of sitting and paying attention to the breath can make a big difference.

3. Respond with compassion.

Compassionate care is a natural outcome of mindfulness practice. In the mindful noticing of stress for the other person lies the seed for our compassionate response. I worked once with an elder man with Parkinson's who was moved to tears once his wife learned to model her steps after his. It took them both a good ten minutes to walk the twenty feet from my office to their car. Mindful "pacing with" is a wonderful practice that helps us shift from trying to get somewhere fast to becoming fully present for ourselves and the other person, while walking together. Such walking is an example of compassionate response.

I would like to end with a note on self-compassion. With greater awareness and deeper understanding of the person's needs often comes the painful realization of our own inadequacies, and of times before when we may have unintentionally hurt the person in our care. We address this by giving ourselves frequent self-compassion breaks, a practice developed by Kristin Neff. First, we recognize the suffering in our heart: "This is painful." Then we see that suffering as a part of the human condition: "We all struggle in our lives." Third, we extend kindness to ourselves: "May I forgive myself." The dementia care journey is an ongoing adult education in mindfulness and love. If we learn to view every one of our dementia care experiences as just that, we will do ourselves a great service, and we will be more free to give the person what they need.

The Mind Curator

Dwelling in one's mind and heart,
one gets to be a curator of the space within.

Sifting through the constant influx of thoughts,
checking for quality. This, yes. That, no.
And so on . . . constantly watching.

Swiftly discarding that which might blemish 

the otherwise pristine blank walls.

Taking the time to appreciate the occasional treasure,
and giving it the space it justly deserves.

Same with probing the heart, acknowledging
each visitor. Then deciding whom to welcome,
and whom to usher out the door. And how to go about it.
Wide open love, compassion, rejoicing, and peace
are equally welcome to stay. Not so anger, craving,
and their cohort of other disruptive accomplices.
Even so, being patient, and understanding.

The mind curator never gets to rest.

Loving Kindness and Compassion

Loving kindness and compassion both originate in the heart. Both evoke a warm, fuzzy feeling. And each tends to be confused for the other, and vice versa. 

Loving kindness, or metta, or unconditional love is the practice of generating love in one's heart towards all people, regardless of how lovable they are.

Far enemy: hate

Near enemy: attachment

Compassion, or karuna, arises when we feel sorry with someone. We feel their suffering. It starts with feeling compassion for our own suffering, the unsatisfactoriness of one's own life. 

Far enemy: cruelty

Near enemy: pity (feeling sorry for the other person)

While different, I find those two inclinations of the heart to be intimately related. Loving kindness practice naturally leads towards feeling compassion, and compassion for self and others facilitates the openness of the heart needed to feel loving kindness.  

Preventing Burnout With True Compassion

@mihaela_V on Twitter asked 'Any tips re: compassion w/o taking on others' suffering?' That's a great question, and one I can answer based on my limited experience as both a mental health professional, and a practitioner of mindfulness. 

Early on in my career, when I worked as a psychiatric social worker, I remember coming home every day from the hospital feeling drained and with little left to give to myself and my family members. The explanation was simple. I was taking on the suffering of those I was meant to help. And the remedy, as suggested by my supervisor, was clear. I needed to strengthen boundaries between me and the patients. Whenever faced with difficult material, I learned to summon images of door being shut, and fences going up. It helped some, but not really. 

The reason is, I did not know what true compassion was.

Fast forward thirty years, and my experience is so different now . . . Mindfulness has enabled me to   bring compassion first to myself, and second to others in my care. And in the process, I have discovered the joy of serving without feeling burdened by it.

UC Berkeley Center for Greater Good has one of the best definitions of compassion:

Compassion literally means “to suffer together.” Among emotion researchers, it is defined as the feeling that arises when you are confronted with another’s suffering and feel motivated to relieve that suffering.

To Leigh Brasington, I owe this clear articulation of what compassion is, and what it is not, and what happens when it is not practiced correctly. Here are my notes from last year retreat with Leigh:

The far enemy of compassion is cruelty. Its near enemy is pity. We risk burnout when we get attached to results, and we insist on relieving the other person's suffering.

Practically, this has meant approaching the other person's suffering like this:

I meet you and I sit with you. I allow myself to feel all of the suffering in this moment, yours and mine. I discern what is yours and what is mine, and what are my reactions to yours and my suffering. And I pay particular attention to any tightness in my mind or body, for it is always a sign unnecessary clinging, which we know is the real troublemaker. What am I wanting that is not possible? What am I pushing away that cannot be done away with? Sitting with her who is sharing her great mental suffering with me, can I let myself feel her anguish, her depression, her hopelessness? Can I stay with the extreme unpleasantness of it all? No need to do anything, other than 'seeing' the whole package, and finding the ebbs and flows of breath in between. Same way I would deal with my own suffering. In the joining and the shared acknowledgment of the suffering lies the possibility of healing. And without the rub from ego-induced clinging, the other's suffering does not stick but leaves instead joy in its trail. Joy from heart open fully, not defended. 

May this be helpful to you whose heart wants to open, and bring relief to the other who is hurting. 

Notes From Facebook Compassion Research Day

Here are my raw notes from day spent at Facebook, focusing on fascinating presentation from  Dacher Keltner, researcher and evolutionary psychologist from UC Berkeley, Greater Good Science Center.

Sympathy Breakthroughs:

• Jonathan Glover, Humanity
• 75% of soldiers refuse to shoot at enemy

Principles of the spread of compassion:

• emergence of care-giving system
• reliable identification
• contagious compassion
• it pays to be good
• from gene to meme

Signals of compassion:

• a reliable signal of compassion: it's not in the face
• the vocal register of compassion: amusement, awe, compassion, enthusiasm, interest communicated through voice

Self-less genes

Viral goodness: the spread of compassion

• neonate distress cries
• emotional, physiological convergence in friends
• compassion inspires elevation
• generosity spreads through networks (Fowler & Cristakis)
• altruism increased in altruistic clusters
• collective joys

Tactile contact: the first language of compassion

• human skin is largest organ that gathers all kind of social information
• touch: rewards, builds trust, signals safety, soothes
• UC Berkeley study on emotion and touch: correct label, were able to identify emotion that was intended through touch
• coding touch
• women misread men's compassion signals through touch
• men miss women's anger signals through touch

Vagal superstars:

• richer friendship networks
• more sympathetitc prosocial children
• trusted more in interactions with strangers

Compassion deficits in US children: empathy has dropped, narcissism has risen

Making compassion a meme, a sticky idea:

• oliners and rescuers
• reading compassionate words like "hug" makes people more altruistic, less prejudiced toward outgroups

Competitive compassion:

• compassion as a basis of status
• reputation

Awe and the sacred:

• transcendent experiences of beauty give people a sense of common humanity
• experiences of awe trigger activation in the vagus nerve
• experiences of awe trigger altruism, compassion

A compassionate, cooperative future:

• Pinker and the rise of cooperation, compassion
• Wright and the rise of nonzero relations
• cooperation fares better than competition
• the wisdom of the tit-for-tat (Axelrod, 1984): cooperates, forgives, not envious, strong

(I especially resonated with the parts about touch and voice. In my work with the dying and persons with dementia, I have found both touch and voice to be the primary channels for relatedness and also vehicles for expression of compassion.)

How I Train Myself

While in the storm still, I have been thinking a lot about 'The Simile of the Saw' (or Kakacupama Sutta), one of the Buddha's teaching about anger and good will. Particularly this passage:

"Even if bandits were to carve you up savagely, limb by limb, with a two-handled saw, he among you who let his heart get angered even at that would not be doing my bidding. Even then you should train yourselves: 'Our minds will be unaffected and we will say no evil words. We will remain sympathetic, with a mind of good will, and with no inner hate. We will keep pervading these people with an awareness imbued with good will and, beginning with them, we will keep pervading the all-encompassing world with an awareness imbued with good will — abundant, expansive, immeasurable, free from hostility, free from ill will.' That's how you should train yourselves."

Today, I shall train myself to be unaffected and will say no evil words. I will remain sympathetic, with a mind of good will, and with no inner hate. I will keep pervading the one who badly hurt me with an awareness imbued with good will, expanding it even further to the whole wide world. Pondering those beautiful words: abundant, expansive, immeasurable, free from hostility and ill will. 

Trusting the Buddha to know best:

Attend constantly to this admonition on the simile of the saw. That will be for your long-term welfare & happiness.

Compassion for those hardest to love is a practical matter. It's good for the mind, it's good for the heart.

How Heroic Are You?

A Reflection on Heroism, Spurred by the 'Fukushima 50'.

Relatives from the 180 workers at the Fukushima nuclear plant are sharing tales of their loved ones' heroic acts:

"My dad went to the Nuclear Plant. I never heard my mother cry so hard. People at the plant are struggling, sacrificing themselves to protect you. Please dad come back alive." 

"My husband is working knowing he could be radiated,"  He told me via email, "Please continue to live well. I cannot be home for awhile." 

"My father is still working at the plant -- they are running out of food…we think conditions are really tough. He says he's accepted his fate…much like a death sentence…"

I have been thinking a lot about those 'ordinary' men (and women?), and I wonder what prompted them to volunteer their lives? 

Philip Zimbardo, from Stanford University has been asking the same question, as part of his 'Heroic Imagination Project':

Villain, reluctant hero, hero . . . it's hard to tell what lies within each one of us. How would you act in the following situation?

It's Already Here

(This whole week, I am at Mount Madonna Center, attending a retreat with Jon Kabat-Zinn and Saki Santorelli. In honor of Jon Kabat-Zinn, I thought I would feature some of my favorite videos of him in my absence. May you enjoy!)

I really love this talk about uncovering our natural compassion:

So true! For me, compassion has evolved over time, and is a direct outcome of my mindfulness practice. Its opposites, unconscious indifference or harming come from not seeing things, or people the way they really are. I know this, from looking back on those times before when I failed to love. 

The Nun Without a Robe

I just read a very moving story in the Sunday New York Times, about Annie (Gloria Wasserman). 

Ms. Wasserman often sent as much as $4,000 a month, usually through money orders, to her relations on both coasts. She also routinely sent along boxes of used clothing that she had culled from places like the Catholic Worker’s Mary House, on East Third Street, where she was known as that rare visitor who searched for items that fit others, and who had a gift for using humor and kindness to deflate the tensions arising from hardship.

“She became like a grandmother to dozens of women on the street who had nobody,” said Felton Davis, a full-time Catholic Worker volunteer. Sensing the lack of esteem in a woman beside her, he said, “She would say: `I have just the shirt that you need. I’ll get it for you.’ ”

Meanwhile, up in New Hampshire, the clothes kept coming. “The boxes would be opened, and it would be like: `Who wants this T-shirt?’ ‘Who wants this sweatshirt?’ ” Ms. Grinols recalled. “So many people in this area got gifts from her."

. . . With the money she earned by working in all weather, in the hours when the rest of us slept, Annie bought Chelsea a used Toyota Tercel. She paid for Chelsea’s tuition at the University of New Hampshire, and provided financial support to a ballet school in Los Angeles. Whatever money she took in, she sent out, while owning little more than a bed and a radio.

And I couldn't help but compare with experience I just had a few days ago during the Center for Compassion and Altruism Research and Education Conference with the Dalai Lama at Stanford University. What stayed with me from the conference was not the Dalai's gentle wisdom, nor the scientists' earnest efforts to research compassion, nor the overall sweet impression of a generally beautiful day. No, what shall remain, was the time spent at lunch sitting across from a Buddhist nun. A taint in the midst of so much shared goodwill. My friend and I had asked the nun simple questions about the monastic life, and about her teacher. The nun, obviously was not the least bit interested, and dismissed us with ice coldness, bordering on rudeness. Later, I saw the woman pushing her way through to get to the VIPs standing in the front of the big conference room. Smiling, signing her book, and bowing left and right . . . 

A robe does not a nun make, just like a monastery is not to be found outside, but inside us instead.  

Where is the nun, or the monk within you? How often do you let it guide your thoughts, and your speech, and your actions?

To Annie, the nun without a robe, I express my deepest gratitude for the gift of her inspiration.

One Big Mistake

I just came back from listening to Gil's Sunday morning talk, on the value of meeting ourselves fully, including embracing the big mistake(s) in our lives, as a source of compassion and humility. Not dwelling on the past, and beating ourselves up, but rather moving forward, taking appropriate reparative actions with others we may have hurt, and making the necessary changes in ourselves, so that we do not keep on perpetuating the same mistake. Gil's talk was very timely, considering that I have been spending lots of time lately facing my big mistake, up close.

During recent week-long with Gil and Andrea, I encountered a part of myself that I did not expect. Every night, I met her in my dreams. And during the day, I felt the effects of her presence, as I sat with a whirlwind of emotions.  Anxiety, rage, fear, sadness, and grief, taking turn to keep me engaged, in my seat. 'Her' is the puella girl who refuses to grow up.

She has been a part of me, my entire adult life. And although I have known this on an intellectual level, it was not until I dwelled in mindful awareness, for hours on end during the retreat, that I started to actually relate to her in an intimate fashion. I saw her for who she is, a weak feminine presence, who does not believe in herself, and cannot figure out a way of her own.  She has come to rely on male authoritarian figures for her survival, and resents it. Although she may dazzle others with her brilliance, she never stays long enough anywhere, to reap the fruit from her efforts. She has become a burdensome presence in my life, whose detrimental effects are far reaching, both professionally and personally. 

After I came back home from the retreat, I reread Linda Schierse Leonard's chapter on The Eternal Girl, in her book, The Wounded Woman:

Ultimately, what is demanded of the puella in the process of self-transformation is to give up her clinging to girlish dependence, innocence, and powerlessness and to accept the strength which is already there - to really value herself. For if she accepts her power and strength, then her girlish innocence will show itself as youthful, feminine elan and vigor, as the spontaneity and openness to new experience that makes creativity and fruitful relationship possible. 

I really get it now. The time has come, to part with my puella friend. No less than my life, and the happiness of those around me, is at stake. Which brings me back to Gil's original point during his talk on compassion.  There is something incredibly humbling about owning one's big mistake, as I am doing. From Heal Thyself, by Saki Santorelli:

Compassion begins at home, with ourselves. Whether offering or seeking help, we are all wounded and we are all whole. 

Now, tell me, what is your big mistake? What can you learn from it? 

Five Ways of Putting an End to Anger

Anger . . . not a day goes by, without feeling its heat, usually in reaction to some other person's unkind words, or actions. 

Here are excerpts from sutta reading we did while at Bodh Gaya, during India Buddha pilgrimage with Shantum Seth - from Madhyama Agama 25, in Thich Nhat Hanh's Plum Village Chanting and Recitation Book: Discourse on the Five Ways of Putting an End to Anger -

When someone's bodily actions are not kind but his words are kind, we should not pay attention to his unkind bodily actions, but only be attentive to his kind words. This will help us put an end to our anger . . . 

With someone whose words are not kind but whose bodily actions are kind, do not pay attention to that person's words. Only be attentive to his bodily actions in order to be able to put an end to your anger . . . 

When you see someone whose bodily actions and words are not kind, but where there is still a little kindness in her heart, do not pay attention to her actions and words, but to the little kindness that is in her heart so that you may put an end to your anger . . . 

When you see someone whose words and bodily actions are not kind, and in whose heart there is nothing that can be called kindness, give rise to this thought: 'Someone whose words and bodily actions are not kind and in whose heart is nothing that can be called kindness, is someone who is undergoing great suffering. Unless he meets a good spiritual friend, there will be no chance for him to transform and go to realms of happiness.' Thinking like this, you will be able to open your heart with love and compassion toward that person. You will be able to put an end to your anger and help that person . . . 

When you see someone whose bodily action are kind, whose words are kind, and whose mind is also kind, give your attention to all his kindness of body, speech, and mind, and do not allow anger or jealousy to overwhelm you. If you do not know how to live happily with someone who is as fresh as that, you cannot be called someone who has wisdom . . . 

This reading made a great impression on me. So simple, so practical. A real gem.

I dedicate this post to my paternal grandmother, whose chronic nastiness I despised so much as a child. She died twenty five years ago. For the first time, I think of her with compassion, and I see her as another human being, not an evil witch. And I use the power of understanding, and loving kindness, to let go of my long held resentment towards her. 

The Dalai Lama Says: Love Your Enemy, Be Happy

Inspiring editorial from the Dalai Lama in Vancouver Sun, today, for Vancouver Peace Summit, titled: 'Compassion for our fellow human beings is the key to happiness'

Excerpts that resonated with me:

One great question underlies our experience, whether we think about it consciously or not: What is the purpose of life?I believe that the purpose of life is to be happy. From the moment of birth, every human being wants happiness and does not want suffering . . .

From my own limited experience, I have found that the greatest degree of inner tranquillity comes from the development of love and compassion. The more we care for the happiness of others, the greater our own sense of well-being becomes. Cultivating a close, warm-hearted feeling for others puts the mind at ease. This gives us the strength to cope with any obstacles we encounter. It is the ultimate source of success in life. We can strive gradually to become more compassionate, we can develop both genuine sympathy for others’ suffering and the will to help remove their pain. As a result, our own serenity and inner strength will increase. The need for love lies at the very foundation of human existence. It results from the profound interdependence we all share with one another . . .

Whether people are beautiful and friendly or unattractive and disruptive, ultimately they are human beings, just like one’s self. Like one’s self, they want happiness and do not want suffering. Now, when you recognize that all beings are equal in both their desire for happiness and their right to obtain it, you automatically feel empathy and closeness for them. Through accustoming your mind to this sense of universal altruism, you develop a feeling of responsibility for others: the wish to help them actively overcome their problems. Let me emphasize that it is within your power, given patience and time, to develop this kind of compassion . . .

We should begin by removing the greatest hindrances to compassion: anger and hatred. As we all know, these are extremely powerful emotions and they can overwhelm our entire mind. Nevertheless, they can be controlled and replaced by an equally forceful energy that stems from compassion, reason and patience . . .

I must also emphasize that merely thinking about compassion and reason and patience will not be enough to develop them. We must wait for difficulties to arise and then attempt to practise them. And who creates such opportunities? Not our friends, of course, but our enemies. They are the ones who give us the most trouble. So if we truly wish to learn, we should consider enemies to be our best teachers. For a person who cherishes compassion and love, the practice of tolerance is essential, and for that, an enemy is indispensable. So we should feel grateful to our enemies, for it is they who can best help us develop a tranquil mind. Also, it is often the case in both personal and public life, that with a change in circumstances, enemies become friends. So anger and hatred are our real enemies. These are the forces we most need to confront and defeat, not the temporary enemies who appear intermittently throughout life.

Individual happiness can contribute in a profound and effective way to the overall improvement of our entire human community. Because we all share an identical need for love, it is possible to feel that anybody we meet, in whatever circumstances, is a brother or sister. It is foolish to dwell on external differences, because our basic natures are the same. I believe that at every level of society — familial, tribal, national and international — the key to a happier and more successful world is the growth of compassion. All that is necessary is for each of us to develop our good human qualities.

My take away: mindfulness is about sitting, yes, and also practicing being in loving relationship with all beings

Minding Anger, With Love

Yesterday, out of the blue, an angry mood overtook me. With fiery thoughts to match, about X . . . The size of my upset seemed disproportionate with the offense, and I wondered . . . First impulse was to feel guilty for hosting such a 'nasty' state of mind. Then, the realization that it was only a temporary condition, made up of harmless feelings and thoughts - as long as I kept them to myself - brought some relief. I was just to observe, explore, feel, note, accept, . . . doing so from a heart place, and not a should stance as before. A funny thing happened. Soon my attention shifted from 'I' to X, and I started to feel the other's pain, and think thoughts of what I could do to care for X. The big shift was my ability to no longer feel divided by my anger. Being at one with myself, through the storm, truly. And letting that state of reconciliation spill over to the object of my initial fury. Mindfulness does work . . .