5 Contemplations For Dementia Care Partners

Sooner or later, during one's mindful journey, one becomes faced with a wall. One has a choice then. To keep bumping one's head against the inevitable, or to stop and contemplate the very nature of the wall itself. The wall is about the impermanence of life, and our need to face that truth. Many times, whenever grief wells up inside, as it did earlier today, I call upon the 5 Remembrances:

I am of the nature to grow old.

I cannot escape growing old.

I am of the nature to have ill health.

I cannot escape having ill health.

I am of the nature to die.

There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change.

There is no way to escape being separated from them. 

I inherit the nature of my actions in body, speech and mind.

My actions are the ground on which I stand.

Strangely enough, I find great comfort in telling myself those lines. It is as if the telling is paving the way for acceptance of what is to come, or what has already happened.  During my work with those in the early stage of cognitive impairment and also with dementia caregivers, I have learned to tailor the 5 Remembrances to more specifically address the unique challenges of the dementia journey. It goes like this:

I am of the nature to grow old.

I cannot escape growing old.

I am of the nature to have ill health of body and/or mind.

I cannot escape having ill health of either body and/or mind.

I am of the nature to die.

There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change.

There is no way to escape being separated from them, in either body or mind.

There is no avoiding making mistakes.

I am doing the best I can and I hold myself with compassion.

May you contemplate those words often. And may you find comfort in them. 

6 Life Lessons From Ones With Dementia

I spent Thanksgiving Day in the dementia care community where I work. Throughout the day, I got reminders about what matters in life, and what doesn't. Take a guess, then read on . . . 

Mind

Few of us pause to appreciate the beauty of our human mind. Not until we are brought face to face with the reality of a mind stripped of some of its essential functions, do we become grateful for what we have 'up there'. The ability to comprehend and make sense of things, to speak and be understood, to make decisions, to have sound judgment, to move, to have emotions, to control them, to remember what just happened, to orient ourselves visually and spatially . . . So many things we owe to the healthy mind! Every day, I marvel at my mind's ability to function so well. And I also ready myself for the eventuality of it failing some day. Not getting attached, even to the mind itself, that which makes mindfulness possible.

Body

The body that once felt eternal, has a way of betraying the very old and the ones with dementia. One by one, systems start failing. Vision, hearing are usually first. Then the legs give way, and a series of assistive devices take over. The cane, then the walker, then the wheelchair, then the reclining chair when even sitting becomes too hard . . . Pretty soon, it is the arms and hands’ turn to go limp. Bodily functions follow, that can no longer be controlled. And close to the end, even swallowing becomes a challenge. Then heart, and breath. The body, just like the mind is a wonderfully engineered machinery programmed from the start for obsolescence. While it works, we tend to treat it with nonchalance. Seeing what happens eventually serves as a powerful reminder to appreciate this body while it is still working, and to also not cling to it too much. It cannot be trusted, just like the mind.

Success

Lawyer, judge, inventor, entrepreneur, surgeon, artist, psychologist, writer . . . they made a mark in society, and had the good fortune of having success, lots of it. Now, there is hardly a trace left of their previous life, apart from fading pictures of past glorious moments, and here and there respectful references to ‘Doctor this', 'Doctor that’. Time and the inability to hang on to memories have a way of erasing what once seemed so important. The world moves on, and the young take over. Seeing this process can help us not fall into the trappings of success, and conversely, failure. No need to get too excited one way or the other. 

Money

It does not matter how much money we make or have. Eventually, we all end up without the ability to enjoy or miss those things we used to cling to. This is not to say we should not plan for the future and make sure we have a comfortable home. It just means we will eventually have to let go of all our ‘things’. Those material possessions are not what matters in the end. Very few of the people I spend time with, talk about what they used to own . . . And the ones who do, all do let go in the later stages of their illness. My mother was one of those people. 

Relationships

Nothing’s for sure, including those close relationships we take for granted. Loved ones upon whom we may have counted for comfort in our old days, those people may die on us, or have a change of heart. The old man who believes that his daughter has died is not far from the truth. His daughter is still very much alive, but she has not visited or called him in years . . . And the woman who thought her husband would be there for her, is now a widow wondering where her beloved has gone. Relationships with those we love and who love us are to be treasured. And we need to expand our circle of love to not just our family and friends, but also anyone with whom we can have a meaningful connection, even if for only a moment. 

Self

This thing we call ‘I’ is not worth getting so preoccupied with. If we live long enough, that too will be chipped away, until we no longer have a sense of identity. The glue that kept our story going will have dried up, and now there will only be a vague sense of existence, and remnants from past habits, that’s all. Yet, most of us spend so much of our lives thinking, acting based on this concept of ‘I’, ‘Me’, and ‘You’. We worry so much about what happened to 'I' in the past, and what is going to happen to it in the future. Our carefully constructed identity is indeed just a story with a beginning, middle and end. For many of us that story will end way before our final years, and in its place will be a void waiting to be filled with new meaning, new ways of occupying ourselves, right there, right now.

What life lesson(s) if any have you learned from being around persons with dementia?

5 Forgotten Mindfulness Practices With the Body

The body scan as currently taught, is not a part of the traditional teachings. Yet, it has now become the practice of choice for mindfulness of the body. This has gotten me curious. In this post, I would like to review the various mindfulness of the body practices as explained in Mindfulness Immersed in the Body. Here they are, along with my commentaries:

1. First is awareness of breath, body sensations, and tensions in the body:

[He] sits down folding his legs crosswise, holding his body erect and setting mindfulness to the fore. Always mindful, he breathes in; mindful he breathes out. "Breathing in long, he discerns, 'I am breathing in long'; or breathing out long, he discerns, 'I am breathing out long.' Or breathing in short, he discerns, 'I am breathing in short'; or breathing out short, he discerns, 'I am breathing out short.' He trains himself, 'I will breathe in sensitive to the entire body.' He trains himself, 'I will breathe out sensitive to the entire body.' He trains himself, 'I will breathe in calming bodily fabrication.' He trains himself, 'I will breathe out calming bodily fabrication.' 

Currently, the awareness of breath practice is most often split from the awareness of sensations in the body as taught in the body scan. Also, many teachers stay clear from any active involvement with areas of tightness in the body. We are told to mostly notice the 'bodily fabrication', and not do anything about it. Here, according to the traditional teachings, the meditator is to use the breath to 'calm' bodily fabrications. I find this more aligned with my experience of the body. Sitting, paying attention to the breath, the attention gets drawn to some discomfort, or pain in a part of the body. I do not fight the distraction, but instead choose to be with it, giving it space to be within each in breath, and letting it dissolve as it may with each out breath. A reminder that mindfulness practice is very much an active practice. It is much more than just sitting . . . 

2. Second is mindfulness of physical activities:

When walking, [he] discerns, 'I am walking.' When standing, he discerns, 'I am standing.' When sitting, he discerns, 'I am sitting.' When lying down, he discerns, 'I am lying down.' Or however his body is disposed, that is how he discerns it. [...] When going forward & returning, he makes himself fully alert; when looking toward & looking away... when bending & extending his limbs... when carrying his [belongings]... when eating, drinking, chewing, & savoring... when urinating & defecating... when walking, standing, sitting, falling asleep, waking up, talking, & remaining silent, he makes himself fully alert. 

We are so conditioned to think of mindfulness practice as mostly sitting, or walking. We forget that opportunities for practice are with us at all times. Sitting now at my desk, I can become aware of fingers tapping the keys. Mindfulness is a 24/7 practice, minus the time we spend sleeping.

3. Third is awareness of the repulsiveness of the body:

[He] reflects on this very body from the soles of the feet on up, from the crown of the head on down, surrounded by skin and full of various kinds of unclean things: 'In this body there are head hairs, body hairs, nails, teeth, skin, flesh, tendons, bones, bone marrow, kidneys, heart, liver, pleura, spleen, lungs, large intestines, small intestines, gorge, feces, bile, phlegm, pus, blood, sweat, fat, tears, skin-oil, saliva, mucus, fluid in the joints, urine.' 

To which I will add the practice of witnessing the results of aging on the body, ours, and that of others. Working with sick, old, and dying folks, I get a chance to see what awaits most of us in the end, if we live long enough. The stench of human feces and urine, all mixed in, in the middle of the night  . . . Youthful beauty, disintegrated, and giving way to an ugly bag of bones. Faces, contorted from pain everywhere in the joints, the organs . . . Minds, gone and struggling to make sense of each moment. We all try so hard to disguise the repulsive nature of our body and the fact that we are walking, defecating machines. 

4. Fourth is awareness of the 4 elements in the body:

[He] contemplates this very body — however it stands, however it is disposed — in terms of properties: 'In this body there is the earth property, the liquid property, the fire property, & the wind property.' 

Standing, I feel the solidity of my feet against the ground beneath. Once mind steps aside, there is only earth element. Taking a shower, I sense the water running down my body, and within, inside the mouth, the viscosity of saliva. Outside, inside, same fluidity. Sick with a fever, I feel fire within. Out and about, the sun warms the outside of my skin. Spinning at the gym, I feel the air from the fan, caressing my face. Meanwhile, the breath comes and goes, inside the nostrils, the chest, the belly. Air all around. The body, our body is not separate from the environment, but instead a different configuration of the four elements. 

5. Fifth is contemplation on the fate of the human body:

As if he were to see a corpse cast away in a charnel ground — one day, two days, three days dead — bloated, livid, & festering, he applies it to this very body, 'This body, too: Such is its nature, such is its future, such its unavoidable fate'...

Yes. Today's charnel grounds are to be found in hospices and nursing homes. Tending the dying, we get to see what happens to the body after death. We may want to beautify corpses, and make them look as if life had not left. That is missing out on the opportunity to contemplate the profound truth of impermanence as it relates to the body. 

Which of these five practices do you feel most inclined to take on? 

Dementia, Grief, Mindfulness, and Not-Self

Contacts with my mother have been sparse lately. It's been hard catching her on the phone during the rare times when she is awake. And the nine hour time difference does not help either. Yesterday, I was able to hear her breathe once as I whispered words of love to her. The aide confirmed that she had seen a response in her face.

Friends, coworkers have been asking about my mom. Each time, I have felt a twinge of annoyance. Grief shows itself in sometimes subtle ways . . .The truth is I have been a bit too adamant to claim closure with my mom. "I have said goodbye. I am at peace."  This last chapter is taking longer than I thought, and I feel as if lost in a twilight zone, with hardly anything to hang on to. No physical contact, no voice, just one breath in several weeks, that's all that's left. 

I have been haunted by the image of her lying in bed, pulling away from my touch, and holding on tight to her sheet instead. Breath coming and going, light as a feather. And no hindrance in the body, anymore. This struck me as remarkable, coming from my mother, who had been such a chronic worrier. She had let go finally, and I had to let go also. Carrying this last image of my mom has been most helpful now that I am thousands of miles away from her. It has also enabled me to understand more deeply the reason for practice. Mindfulness, particularly when focused on the breath, is the surest method for experiencing the relief from ordinary mind-made suffering.

From my mother, I have learned most during those last ten years when dementia stripped her brain bit by bit, of its ability to fabricate thoughts about past, future, and self. Being with her  forced upon me the direct experience of not-self, and for that I am incredibly grateful. 

The Mother Who Used to Know Me

The mother who used to know me
has gone
and in her stead, sits a woman who stares at me
the same way she does with strangers.

The mother who used to know me
has gone
and shows irritation whenever I touch her
who are you to dare, she wants to say.

The mother who used to know me
has gone
and no longer tries to respond
whenever I look at her and tell her my love.

The mother who used to know me
has gone
and tries to understand why it is
that I of course smile at her so sweetly

The mother who used to know me
has gone
and my heart revolts against such cruel parting
that leaves me wanting so much.

The mother who used to know me
has gone
and I cry tears of sorrow
for her who still seems to exist, yet no longer is.

The mother who used to know me
has gone
and all the wisdom I thought I knew
no longer seems so relevant. 

What Grief Can Teach Us About Love

Grief is not all the pain it appears to be. Grief as I have come to know it, is also an extraordinary opportunity to experience and see close up the suffering from clinging in its most extreme form. This is my mother’s parting gift to me.

Yesterday, when I arrived, I found her sitting at her usual table in the back of the dining room. Remembering our intense connection from two weeks ago, I expected at least an acknowledgment, a gaze of recognition, a smile. I was met instead with a blank stare. I sat by her side and waited. “Bonjour Maman. C’ est Margot, ta fille.” She looked up, gave me a look, and closed her eyes again. Aides had laid out dinner in front of her, and I was to help her.  It took forty five minutes for her to get one serving of the French version of Ensure down. I followed the aides as they wheeled her back to her room, and I kept her company as she laid resting in bed. Giving her kisses, stroking her forehead, reaching out for her shriveled hand did not produce the usual joy in her. Rather, it became clear that she wanted to be left alone. She is withdrawing from the world, I thought, and she is letting me know.

My mother mostly wants to sleep, and sometimes drink a little, that’s all. No more music, no more engagement, no more closeness, no more food. This is in direct contrast to the mother I knew who loved singing so much, and eating well, and being hugged and cajoled. That version of her no longer exists, other than in my memories, thoughts about the past with no relevance to the present conditions. Turning inside, I get in touch with the pulling away and the hanging on from lingering grief. What we call love is first and foremost attachment. The more we feel love, the tighter the bond, and the more difficult it is to let go of the object of our love. My mother is letting me experience what I first learned in words from Ayya Khema. True love is purified from all attachment, and demands that we not burden the loved one with the imposition from our clinging. It also requires that we reconcile with the universal truth of impermanence, that all that is born must die. Last, we must accept the not-self nature of our existence. The only thing that matters at this moment is to give this person who I have been calling my mother, the space to die at her own pace. Anything short of that is due to cause suffering for both she and I.

We tend to make a big deal of death. Watching my mother gently fade away, I am struck by the simple physical nature of end of life, same way I felt when my daughters were born, only in reverse. We are born, we live, we die, that’s all, and with each transition, we are given to a bunch a physical processes, of entering, being in, and leaving the body. At some point, the body gets worn out and starts shutting down. In the case of Alzheimer’s as with my mom, the end phase stretches over many years, giving loved ones a chance to work with grief and clinging not just once, but numerous times. One thing I have learned from this process is the need to appreciate all that is given at any moment. It is so easy focusing on what no longer is, as opposed to what still is. Before my mother lost the ability to speak a month ago, I did not realize how much it mattered to me that she be able to talk and respond still, even within the limited range of her late stage Alzheimer's narrative.

Now, treasuring the times sitting at her side and feeling her spirit, still flickering, and her breath also. I know soon there will be no life left at all. 

Being With Speechlessness (Aphasia)

On Monday, my mother was singing to me her favorite tune La Java Bleue over the phone. On Tuesday, she had been robbed of her ability to speak by a stroke. Aphasia, the medical term to describe what happened to my mother, comes from the ancient Greek term for 'speechlessness'. It is associated with different types of neurological disorders, and comes in several forms. My mother suffers from expressive (non fluent) aphasia, meaning she knows what she wants to say, but is unable to get the words out. Such a sudden loss is traumatic and I have had to rely on both my practice and field knowledge to be as supportive as I could for my mother. I have also had to deal with my own grief of the mother I knew who sang and spoke to me. Yet another loss down the path of Alzheimer's and very old age . . . 

Most important is to acknowledge directly to the person, what has happened, and the likely emotions associated with the communication challenges that they are experiencing. When complicated with memory loss, the person may not understand what is happening to them, and may need to be reminded. With my mother, I have been telling her that she had a stroke, and is experiencing a temporary loss of speech. I want to keep her heart in a hopeful place, and there is indeed the possibility that she may respond to speech therapy.  I empathize with the extreme frustration she shows in her facial expressions whenever she is trying to talk, and I apologize for the times when I may not understand her. This is a step caregivers often forget in their communications with aphasic persons, particularly when the aphasia has been present for a long time. I also rely on the bank of previous spoken interactions with my mother, and all the topics I know she enjoyed then and is still likely to enjoy. Next time I visit, I may also try to see if I can encourage her to communicate through art, although that door may be closed given the state of her advanced dementia. For a person suffering from strict non fluent aphasia, and with limited to moderate or no dementia, writing and art making would be two logical outlets for self-expression. Last, is falling back on two most profound forms of communication, touch, and seeing. Gazing into my mother's eyes, I shared some of the most tender and loving moments we ever had together. It is quite something to realize that it took that much, for the two of us to get there. 

Many times during the past three weeks, I have rested on the foundation of my practice. Reading Ayya Khema, stopping often to connect with the breath, sitting every morning without fail, sharing in this blog with all my noble friends, and contemplating the teachings, particularly on suffering,  impermanence, not self, and the five remembrances. I have also been reflecting on my experiences of noble silence during retreats, and how such practice can help one prepare for the possibility of speechlessness both in oneself, and in others. 

A Lesson in Love

Sitting by my mother’s bed at the hospital, my heart is filled with emotions. Mostly love, and deep grief from a new threshold passed over a few days ago. My mother‘s stroke has left her unable to speak. Monday morning, she and I had been singing together La Java Bleue over the phone. When I saw her yesterday for the first time since her stroke, she recognized me instantly and smiled, with one tear out of the corner of her right eye. It hit me right there, the immensity of her love, and of my love back to her. The nurse said it was the first time they had seen her open both eyes since she got admitted Tuesday night. There is no telling whether she will speak or move her right leg again. She makes grunting noises when I put the phone on her ear and my brother speaks to her.

Sitting by my mother’s bed, my mind takes me to hard places, mostly memories of when I rejected her   love, and I was not there for her. Of course, I thought had reasons every time. I dismissed her as too anxious, too dependent, and wanting to live her unlived life through me . . . I wished for her to be other than she could be, less depressed, happier, less demanding of my love and my brother’s love. I moved far away, five thousand miles, to live ‘my own life’. This is what the mind does whenever it is intent on closing the heart. There were also the times, more recent, during the beginning of her Alzheimer’s when the illness exacerbated those traits of hers, and I did not know then the real cause, and I reacted unkindly. There is no rewind button on life. Instead, one is left with the karmic consequences of past misdeeds and missed opportunities to love.

Sitting by my mother’s bed, listening to the monitor’s beeping sounds and the commotion in the hallway, I take refuge in practice, and decide to turn the guilt that besieges me, into a teacher of love. No need to keep adding more misery, this time self-directed. Guilt, rightly understood, is a call to move forward with the heart wide open, and with mindfulness. Using the sting of regret as a constant reminder to guard from the mind’s deceiving ways. Dwelling in love, at this moment, first for my mother, and also myself, I feel a shift, an immense gratitude for this one more gift from her. And I review all the gifts she bestowed on me starting with the gift of life itself.

May she be at peace, and at ease during this transition.

May I also be at peace, and at ease.

And may this serves to help you love better, more often.

Dementia Care and Not Self

Why dementia care is such a noble practice:


Not self in action . . .

And a great example of service as practice, and practice as service.

Minding the Guilt

Guilt is an interesting emotion with many nuances worth exploring. 

Guilt came up recently in a caregiver support group I help facilitate. One woman felt guilty for not being there for her husband 100 percent of the time. I explained that we often set ourself up with unrealistic expectations of ourselves, 'should-s' that demand from us more than we can humanly give. And we end up with this yucky feeling in our stomach, a mixture of self-hate, confusion, and powerlessness. This is false guilt, a toxic emotion to be disposed of promptly as soon as we can see it for what it is.

Guilt can also be of the rightful kind. There are a few major decisions I have made in the past that have come back to haunt me, both in terms  of negative outer consequences, and also the pain from a tormented heart. There is no escaping such guilt. I have found it needs to be endured with great tenderness, and also the determination to learn from it. Rather than lingering in biting remorse, better yet is to mine the wisdom buried in one's earlier mistakes. Whenever guilt raises its ugly head, I meet it like this:

First, I feel the guilt completely, including the slew of other, all very unpleasant mind states attached, the sadness, the remorse, the regret, . . . I feel them all. Guilt is a blow to the ego. It crushes one's inflated view of one self, and as such, can be seen as a very good thing. Guilt opens one's heart.

Second, I move on to a state of self-compassion. I revisit what happened, and the circumstances that led to the original action. A state of limited consciousness and heart not being opened, for sure. I forgive myself. 

Third, I step out of myself, and I feel the pain of those I unwittingly hurt. I use that intimate knowledge to build up the necessary resolve to not repeat such hurtful acts. Part of that resolve is a renewed commitment to mindfulness and loving kindness practice, the two best safeguard I know against negative karma. 

Fourth, I take a forward thinking stance. The past is the past that cannot be undone. All I can change is how I think, feel, and act in this present moment. The opportunity to love is right now. Today is the first day of my remaining life.

How do you deal with guilt?

Launching Mindfulness-Based Dementia Care at UCSF

'Mindfulness' and 'dementia', two words to do with mind:

mindfulness

dementia, from Latin word demens, which means 'without mind'

Mindfulness and dementia are not just connected in words. Mindfulness also happens to be a key element of successful dementia care, working on two fronts: 1) to reduce caregiver's stress, 2) to help the caregiver be present for the person in their care. Facts gathered by the Alzheimer's Association show the extraordinary stress suffered by most family caregivers:

• 61 percent of dementia caregivers suffer from high emotional stress.

• 33 percent report symptoms of depression.

• 43 percent experience high physical stress.

• 75 percent are concerned about maintaining their health.

• Dementia caregivers are more likely to have adverse physiological changes such as high levels of stress hormones, reduced immune function, increased hypertension, coronary heart disease.

• In the last year of their loved one's life, 59 percent feel they are on duty 24 hours a day.

This goes on for an average of 4 to 8 years post-diagnosis. It is no wonder 72 percent of caregivers express relief after their loved ones die. For professional caregivers and health care providers, the stress is also intense and can lead to burnout. 

Until recently, most mindfulness-based approach to dementia care referred to Mindfulness-Based Stress Reduction for dementia caregivers. Having observed numerous times the unique challenges as well as mindfulness practice opportunities in dementia care, I realized the need for a mindfulness-based program specially tailored to dementia caregiving. Hence began the Presence Care Project, a non-profit initiative aimed at promoting a new form of dementia care training. In the Presence Care approach,  mindfulness, informed by experiential understanding of the person with dementia, becomes the foundation upon which a caregiver can rest, moment-to-moment, day after day, during the long journey of dementia. UCSF OSHER Center for Integrative Medicine has now taken on this new approach and recently launched its new Mindfulness-Based Dementia Care (MBDC) program.

MBDC builds upon the now very well proven model of Mindfulness-Based Stress Reduction (MBSR),  and combines solo mindfulness practices, interactive mindful care practices, lectures, and group sharing. Throughout, aspects of mindfulness practice and dementia care are interwoven. The emphasis is on practice during and between classes. The end goal is for participants to experience a radical shift in attitude from mostly doing and reacting, to being skillfully present for themselves and the person in their care. MBDC is appropriate for the whole range of persons involved in dementia care: family and friend caregivers, professional caregivers, elder care professionals, nurses, doctors, and other health care providers. 

MBDC rests on this central premise: mindfulness, that which helps dementia caregivers reduce their stress, is also what can help them provide the best care for the person with dementia. 

The first series of 8-week classes is starting next week and will be taught by myself and Dr. Kevin Barrows, physician and director of mindfulness programs at the OSHER Center. 

Creating the Space

(cross-post with Presence Care Project blog)

Amazing things can happen with folks who are living with dementia. They can start speaking intelligible words after months of muteness. They can start relating and smiling again. They can move their previously frozen limbs. They can sing entire songs. They can show flashes of insight. So many possible surprises.

However, the conditions have to be right.

First and foremost, the person needs to be given the time, and the mental and emotional space to BE. That means no rushing, no outpacing, no talking over, no ignoring, no assuming. Instead, we are to practice being present for them.

How does that work?

First I take a chair and I sit . . . down. Down at the person’s level, mirroring her own sitting. And I take the time to relax into my body, and to let my mind settle. Becoming aware of the sensations in my body, and of breath. Dropping below the habitual level of discursive thinking and emotional reactivity. I create space within my own mind. Sitting with her, I practice what is commonly called mindfulness.

Something usually happens then. Mindfulness starts working its magic not just on me, but also the person I am sitting with.

I notice my friend’s body starts to relax, and I can feel her mind loosening as well. There is an overall sense of joint resting within a vast expanse. For her this is especially important, as the newly created space and stillness gives the tenuous connections in her brain a chance to take again. She can ‘re-ment’. She was mute and now she tells me “thank you”.

If electrodes were taped on my friend’s brain, I am pretty sure, we would see dramatic changes in her brain’s activity and connectivity. Mindfulness by proxy . . . Maybe a new avenue for neuroscience research?