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?

Why Limit Love?

Today, I visited a very old woman.
I thought she was a man at first.
Age does that, obliterates all traces
of vanity and feminine glory.
A big, oozing wart on her cheek
kept drawing my gaze, hypnotic,
and in my heart, disgust surged.
She reached out for my hand.
Right next to my not liking, love arose,
awakened by hers. She smiled.
"Have you had lunch?"
In her mind, I was her daughter.
I flashed back on my own mother
who died two months ago.
And decided right there, why limit love?
I could become a daughter again,
if only for that moment.

Not Chasing After the Past

I was at a dinner last night and a woman there who is a rep for a cosmetics company, tried to convince me to buy her miracle anti-aging cream. 'Look at me! I am sixty one, and I look twenty years younger . . .' She took a look at my face and decided I probably needed the 'Re-Define' line.' I was polite, took her fancy brochure, and dumped it in the trash after I got home. How foolish, I thought, this refusal to go with the inevitable. 

You shouldn't chase after the past.

or place expectations on the future.

What is past 

is left behind.

The future is as yet unreached.

Whatever quality is present

you clearly see right there, 

right there.

Not taken in,

unshaken,

that's how you develop the heart.

Ardently doing your duty today,

for - who knows? - tomorrow

death may come.

There is no bargaining 

with Death and his mighty horde.

Whoever lives thus ardently, 

relentlessly ,

both day and night,

Has truly had an auspicious day:

So says the Peaceful Sage.

- Bhaddekaratta Sutta: An Auspicious Day, MN 131 - 

Are you chasing after the past?

In Her Wake

In her wake,
tears welling up
as soon as I sit for a while
and hidden joy
of the enduring love
that binds me to her still.

In her wake,
regrets about times
when I did not love her well,
one, two, three, four and more;
wishing for a rewind button
that does not exist.

In her wake,
a renewed inspiration
to open the heart
when the mind thinks otherwise
and to not let my own wounded-ness
blind me to the possibility of love

In her wake,
many thoughts coming and going,
and the reminder to guard
from misguided sentimentality
and the easy temptation
to idealize the deceased.

In her wake,
recognizing as my own,
hindrances I used to see in her mostly:
attachment to material things,
chronic worrying about imaginary future
and love tainted with much clinginess.

In her wake,
awareness of impermanence
sinking more deeply;
even her whose life I took as a given
had to disappear, first in mind, slowly,
then in body, with the final exhale.

In her wake,
the reassurance that death can be sweet,
nothing to fear, only the mind's ideas
and our unwillingness to let go;
holding tight the comforting vision
of her surrender - much peace, much ease.

In her wake,
the determination to not let her terminated life,
every bit of it, go to waste.
Using all I learned from her, all she gave me,
to live each new moment more wisely, more kindly.
I used to call her Maman.

Grieve, And Don't Grieve

The mindfulness-based injunction to not grieve can be misunderstood. As I am waddling through my own grief, it is becoming more clear that one is not to indulge in the proliferation of grief related thoughts. AND, at the same time, one is not to ignore the waves of grief-related emotions that keep on surging from the heart.

'Do not grieve' is an impossible goal for the ordinary humans that we are. Hindrances in the unenlightened or partially enlightened mind make it such that clinging is present still, which leads us to experience great suffering when our love one leaves us permanently. This non negotiable goodbye brings our grasping tendencies to the forefront of our consciousness, and we get to feel the painful consequence from our binding and impure love.

If we try to hasten the 'not grieving' process, we run the risk of repressing the grief. Not a good thing, as I learned many years ago when I could not face up to the reality of my emotions when my father died. The dis-owned grief came back to crush me a year later, in the form of a disabling breakdown. We are to recognize the emotions that rise up, all of them, without judgment. We feel them, we give them space to be, and we move on with the next moment.

Conversely, we do not want to overindulge grieving thoughts. Such over thinking is only an expression of the mind-created self running wild. It is easy letting the mind create stories about the dead person, and ourselves in relation to the person. Wishful stories, guilt ridden thoughts, embellished tales . . . are all fabrications that keep us stuck in the suffering from unnecessary clinging. To let go of the urge to think such thoughts, I have found it helpful to contemplate Ayya Khema's talk on Metta, especially this:

The near enemy of love is attachment. [...] The whole problem lies in the fact that because it is attachment, we've got to *keep* those one, two, or three in order to experience any kind of love. We are afraid to lose them: to lose them through death, through change of mind, to leaving home, to whatever change happens. And that fear discolors our love to the point where it can no longer be pure, because it is hanging on. Now fear is always connected to hate. It doesn't mean that we hate those people, those one, two, or three, or four, or five, or how many there happen to be in the house, it means that we hate the idea that we could be losing them. So there's never that kind of open-hearted giving, without any demand behind it that a certain person is also there to receive it. Therefore it's always dependent, and as long as we are dependent, we're not free. This kind of love is doomed from the beginning and we all know that. We can change that kind of attachment to something else, but most people do not have that ability. Some people do, they manage; but it's a rare case. 

Do Not Hang On

My mother died earlier this morning.

My friend Christine shared this gift with me, and I want to share it with you:

This is the note left by Joan Baez's mother who died Saturday April 20th, just a few days short of her 100th birthday:

"Friends who want to celebrate my new adventure, please gather round. Don't grieve, for it's only a worn body that's leaving and the memory of any sad times goes with it. The good memories are in my spirit and my spirit is with you today. I'm in your midst, for there's nothing more valuable to me than to be with you my beloved family and my gracious friends.

Take a moment for silence and wish me well. I'll hear you. Then make the bottles pop. You know I love champagne almost as much as I love you!

Big Joan"

I may not be in the mood for champagne, but I do agree with the 'don't grieve' part. My mother was so clear in what she expected of me during those last few months. Let me go, do not hang on, this is what needs to be done now . . . 

Being Sick

Being sick, as I have been for the last few days, forces upon oneself the reality of the body. A cold, is all it takes to drive home the wisdom of the second remembrance:

I am of the nature to have ill health.

I cannot escape having ill health.

Head cluttered with fever, chest shaken with a relentless cough, limbs burdened with soreness, there is no room left for extra-thoughts. The mind can only attend to the present moment, the unpleasantness of sick body. Of course, the temptation is great to want to jump to aversion, 'I hate this', and its cousin, craving for the return to a healthy state, 'I want to be well'.

Being sick, one gets to practice mindfulness of vedana, using the bridge from the second remembrance to get one step closer to equanimity and acceptance of the inherently displeasing nature of this life.

Being sick, is a dress rehearsal for what it must be like at the time of final parting:

I am of the nature to die.

There is no way to escape death. 

Lots of one's fears about death are born out of times when the body is well enough to leave the mind free to make up stories about one's dying. Just a cold is enough to make one realize what happens when the body breaks down. The illness takes over, and the unpleasantness is such that one becomes disenchanted with life. Letting go starts feeling sweet.

A House of Cards

One of the gifts from spending time with the ones experiencing old age, dementia, sickness and death, is the ongoing opportunity to come closer to the true nature of life. What set the Buddha on his path is good for me too . . . I now understand why the wise man recommended charnel contemplation as one of the mindfulness practices. It is one thing to read about death, and quite another to get close to it with all senses.

Seeing, smelling, touching, being in the presence of one whose body has become a worn out, pain-ridden bag of bones, I get to reflect on the destiny of 'this' body. Being in the presence of one whose mind no longer remember even the steps for basic activities of daily living, I understand that mind is not to be trusted. Sitting at the bedside of one at the verge of death, I get a glimpse of the unavoidable, all encompassing letting go awaiting. This is how things are.

Same with witnessing the many losses to be endured by so many toward the end of their lives, as they get 'placed' in assisted living or a nursing home. A place to call home, no more. The freedom to go as one pleases, forget it. The right to privacy, no, you are getting a roommate, one who may be dying right next to you in the middle of the night.  The pleasure of sitting in the kitchen, nose happily tickled by the familiar aroma of chicken soup simmering on the stove, not an option, you are now being wheeled from your room to the dining room three times a day and that's it. The need to feel useful and contribute to the world, what do you mean? you have paid your dues, now is time to be served and cared for whether you want it or not. A diagnosis of dementia, a stroke, a car accident . . . that's all it takes for one to lose all the basic constituents of one's ordinary well-being.

How precarious the nature of our day to day happiness, and how dependent on so many unreliable factors coming together in some kind of homeostasis! The house of cards could tumble down at any moment.

Ever since my grandfather's sudden death when I was four, I have had this felt sense of tragic unpredictability. An early brush with the First Noble Truth that has shaped my way of being in the world, very early on. Decades later, and rich with many more life lessons, I get a chance to reflect on the many ways that the mind wrap itself around the most inconvenient truth of impermanence. So many mind states, some wise, others not so much. Grief, loss, anxiety, depression, mindfulness, clinging, regret, remorse, anger, fear, patience, denial, avoidance, kindness, oblivion, compulsions, delusions, detachment,  busyness, . . . Finding, verifying the truth of clinging at the base of each instance of mind-created suffering.

I don't want to reside in the house of cards. I want to rest on rock solid ground instead. How about you? What is your relationship to the house of cards? 

Living a Life Without Regrets

Bonnie Ware, a palliative nurse in the UK made the headlines earlier this year with her book, The Top 5 Regrets of the Dying. I have to thank Was Once, one of my Dharma blogger friends for forwarding me the link to Bonnie's website, and inspiring me to contemplate those 5 top regrets: 

1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.

2. I wish I didn't work so hard.

3. I wish I'd had the courage to express my feelings.

4. I wish I had stayed in touch with my friends.

5. I wish that I had let myself be happier.

I went down the list and checked, am I living my life wisely? 

Yes,  I do live a live that is true to myself. This was not always the case. It's took me thirty some years before I even knew what my true self was, and a few more thereafter to live a life in accord with that knowledge.

No, I am not very good when it comes to having balance in my work. I still haven't quite figured out the difference between passion, work, and driven-ness. And I know I would do well to work less, and spend more time to just sit and practice being present.

Feelings used to scare me, but that was a long long time ago. 

I probably could carve out more time for my friends. And at the same time, I am very aware of the preciousness of making time for loved ones. And I try . . . 

Number five is not so clear cut. Letting oneself be happier is not that simple. I have found there is a big difference between intending to be happy, and actually being happy. It is not that easy letting go of the mind habits! With mindfulness practice however, the clinging gets to be lesser and lesser, and fear, and anger are no longer so compelling. I feel so grateful for my practice.

How does your life measure up to Bonnie's list? What do you need to change to make sure you will not end with big regret(s)?

6 Teachings on How to Be With the Dying

Ayya Khema's biography has been my late night companion for the last few weeks. Such an inspiring life, and so many wise teachings interspersed throughout. I especially appreciate her advice on how to relate to the dying:

1. When a person is dying, we should recall to him all his good deeds, so that he can die with a peaceful and happy mind. That is very important, for it very often occurs that on their deathbeds people are suddenly afflicted with regret and remorse, because they think they have done one thing or the other wrong. If you, as a doctor or a nurse, do not know a dying person very well, you should get information from his family so you can help him.

2. We should get in physical contact - hold hands with the dying person or stroke him, so he does not get the feeling he has been abandoned.

3. The sense of hearing is the last sense to go. Therefore we should not think that a person who seems to be lying there unconscious is not hearing anything. In his presence, only those things should be said that he should hear.

4. We can say to the person that we are all going to die. The body is not the most important thing. The mind and consciousness of the good and true are much more important. 

5. [We should not shy away from relieving or eliminating physical pain.] Consciousness is also present even when a dying person cannot answer or respond in the usual way. It is completely wrong to give a person over to pain - this only fills the person's mind with negativity and discord.

6. One should die at home in a good, familiar environment. One's dear ones should be present and know that they have to give the dying person permission to die. It is important to say to him or her: "Yes, we will miss you, but we're all completely okay, we're are just fine. We love you, but we can go on living." We should not try to hold on, since that makes dying more difficult.

6 great teachings for us to remember when the moment comes to midwife another person into dying. 

Steve Jobs Was a Dharma Teacher Also

Steve Job's death yesterday came as a shock. We all knew he was dying, but were hoping that he would be a part of this world for a little while longer. As a tribute to him, I would like to share this video of him giving the Commencement Speech for the Stanford class of 2005.

I especially appreciated his story about death:

When I was 17, I read a quote that went something like: “If you live each day as if it was your last, someday you’ll most certainly be right.” It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself: “If today were the last day of my life, would I want to do what I am about to do today?” And whenever the answer has been “No” for too many days in a row, I know I need to change something.

Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure – these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.

About a year ago I was diagnosed with cancer. I had a scan at 7:30 in the morning, and it clearly showed a tumor on my pancreas. I didn’t even know what a pancreas was. The doctors told me this was almost certainly a type of cancer that is incurable, and that I should expect to live no longer than three to six months. My doctor advised me to go home and get my affairs in order, which is doctor’s code for prepare to die. It means to try to tell your kids everything you thought you’d have the next 10 years to tell them in just a few months. It means to make sure everything is buttoned up so that it will be as easy as possible for your family. It means to say your goodbyes.

I lived with that diagnosis all day. Later that evening I had a biopsy, where they stuck an endoscope down my throat, through my stomach and into my intestines, put a needle into my pancreas and got a few cells from the tumor. I was sedated, but my wife, who was there, told me that when they viewed the cells under a microscope the doctors started crying because it turned out to be a very rare form of pancreatic cancer that is curable with surgery. I had the surgery and I’m fine now.

This was the closest I’ve been to facing death, and I hope it’s the closest I get for a few more decades. Having lived through it, I can now say this to you with a bit more certainty than when death was a useful but purely intellectual concept:

No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true.

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

And I thought of the wisdom of another man, not famous like Steve, but just as wise . . . 

This is the truth.

We Must All File On

The old man was in pain, and I was called to check on him. When he first got here, he was able to make it to the dining room some times. Not so, now. He has been confined to his bed, with the oxygen machine as his constant companion. Pillows, lots, behind his back, between his head and the side wall. It's hard being comfortable, and it's the best that can be done. 

I asked if I could sit, and he said yes. 

How about the pain, I wondered? He grimaced. "An 8, it comes and goes, can I get more medicine?" Folks on hospice always want more meds. More morphine, more Vicodin, more Klonopin, more . . . How come we the living well get to decide when and how much? Who makes these laws? I get angry when I see all the suffering that comes with some endings.  The hospice nurse had been called, and we had to wait. 

I asked if I might touch his hand, and he said yes.

The old man is usually not very talkative, but this time was different, and he proceeded to tell me his whole life story. A sad one, filled with many tragedies, and also marked by great resilience in the face of so much adversity. The old man was not able to attend school, but he had spent his life in books, to make up. I got treated to Schopenhauer and Shakespeare, and this from Ella Wheeler Wilcox:

But one by one we must all file on. Through the narrow aisles of pain.

"The young ones, they don't think about it, but one day they too will have to file on". The old man looked at me. And I told him I knew, yes, one day my turn would come also when I would have to file on, through the narrow aisles of pain, I was very aware. The old man seemed to get comfort from knowing that we all got our turn. "Such is life . . . and I wish I could just go to sleep and not wake up."

I asked if I should stay a bit longer, and he said yes.

Serena was playing a good game of tennis. I adjusted the TV so that the old man could have a better look. "Once, I was able to run, and jump like her . . ." 

The Old Age Home Contemplation

For greater mindfulness, one can heed the Buddha's advice and go to the cemetery: 

(1) And further, monks, as if a monk sees a body dead one, two, or three days; swollen, blue and festering, thrown in the charnel ground, he then applies this perception to his own body thus: "Verily, also my own body is of the same nature; such it will become and will not escape it."

Thus he lives contemplating the body in the body internally, or he lives contemplating the body in the body externally, or he lives contemplating the body in the body internally and externally. He lives contemplating origination-factors in the body, or he lives contemplating dissolution factors in the body, or he lives contemplating origination-and-dissolution-factors in the body. Or his mindfulness is established with the thought: "The body exists," to the extent necessary just for knowledge and mindfulness, and he lives detached, and clings to nothing in the world. Thus also, monks, a monk lives contemplating the body in the body.

(2) And further, monks, as if a monk sees a body thrown in the charnel ground, being eaten by crows, hawks, vultures, dogs, jackals or by different kinds of worms, he then applies this perception to his own body thus: "Verily, also my own body is of the same nature; such it will become and will not escape it."

Thus he lives contemplating the body in the body...

(3) And further, monks, as if a monk sees a body thrown in the charnel ground and reduced to a skeleton with some flesh and blood attached to it, held together by the tendons...

(4) And further, monks, as if a monk sees a body thrown in the charnel ground and reduced to a skeleton blood-besmeared and without flesh, held together by the tendons...

(5) And further, monks, as if a monk sees a body thrown in the charnel ground and reduced to a skeleton without flesh and blood, held together by the tendons...

(6) And further, monks, as if a monk sees a body thrown in the charnel ground and reduced to disconnected bones, scattered in all directions_here a bone of the hand, there a bone of the foot, a shin bone, a thigh bone, the pelvis, spine and skull...

(7) And further, monks, as if a monk sees a body thrown in the charnel ground, reduced to bleached bones of conchlike color...

(8) And further, monks, as if a monk sees a body thrown in the charnel ground reduced to bones, more than a year-old, lying in a heap...

(9) And further, monks, as if a monk sees a body thrown in the charnel ground, reduced to bones gone rotten and become dust, he then applies this perception to his own body thus: "Verily, also my own body is of the same nature; such it will become and will not escape it."

` The Nine Cemetery Contemplations, from Satipatthana Sutta: The Foundations of Mindfulness `

Or one can spend time in an old age home, or a hospice, and witness day after day, the inevitable deterioration of body and (often) mind, that comes with  death approaching.

Hence, coming to the same deep realization:

Truly, also my own body is of the same nature; such it will become and will not escape it . . . 

Truly, also my own mind is of the same nature; such it might very well become . . . 

Service work, it's good for the ones we serve. It's also one of the most powerful spiritual practices to help one attain freedom from greed, hate and delusion. 

And Life Goes On

I stopped by her room
and saw nothing different,
other than labored breath, and stiff body.
The doctor was on the phone,
ordering some meds.
Aides were going about
their usual after dinner routine.
Betty's roommate got swiftly changed
and put to bed.
The dimming light signaled another day,
ready to end.

I went home to have dinner with my friend.
We ate and talked and laughed.
One last check into work mail,
and I learned the news that Betty had passed.

The next day I stopped by her room,
and found no sign left of her,
other than two family pictures,
and her hospital bed, stripped of the old sheets,
and not yet remade.
A new family came to check available rooms.
Shared rooms.
They peeked in, and liked what they saw.
"It's so bright. Our mother would do well here."