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. 

A Slap In the Face

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 of escaping 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 contemplate the first four of the five remembrances often. Yesterday went deeper . . . 

I spent most of Thanksgiving at the memory care community where I work part of the time. I had expected a joyful day.  I came out instead with heart filled with deep sadness. It helped that I had gotten slapped in the face, literally, by a still relatively young man, a resident with a case of early onset dementia, and lots of rage bottled up inside. Too much going on, too much noise, too many strangers visiting, a complicated family situation . . . he could not take it, and delivered me an unexpected blow, just after I had introduced myself to him. I did not flinch, and walked him to the table where a few relatives were to join him for a short lunch. He obviously needed space. I left him waiting alone. 

Right side of the head still burning, I went on and pretended nothing happened. The truth was, mind had been jarred, and questioned. The angry man had hit me hard with his suffering, and I had to face the truth of the four remembrances delivered right into my flesh, not just as thoughts to be pondered. Habitual, reactive mind revolted, and heart flinched at the very real possibility. Everywhere I turned, lonely souls reminded me, and even the ones with families visiting soon would be left also, back to living the end chapter of their lives in this place. I stopped being the one working there, and felt like almost one of 'them', with only years, and the randomness of fate separating us. 

Life, with its conventional narrative of past, present, and future, is rotten at its core. The story never ends well, and the only way out is through the dropping of the story itself. Each instant, a new moment, a new call to living.

Relative Time, Absolute Change

From the retreat I brought back these notes, from Leigh's lecture on 'time':

We look at impermanence, realizing that everything that arises passes until it eventually ceases to exist. We usually understand this on an intellectual level, but we need to 'see' it. It is so pervasive that we miss it. 

What is now?

What is the past? Just memories.

What is the future? Just fantasies.

The truth is, it's always now, and it's always changing. Time is just our attempt to measure the underline phenomenon of change. Time is an illusion, and a difficult one to navigate. We are always here, now. Our world is ephemeral.

It's all a sandcastle, guys. Every bit of it!

Now, try this practice, as I have:

Try walking without thinking time, and instead just 'see' change. Try being really present for the now. 

Mind blowing, literally!

Muhammad Ali's Latest Life Lesson

The crowd's reaction to this made me very sad:

They missed the whole point of Ali's appearance. They missed the fact that they too one day will be betrayed by their body. 

The Way Flowers Are

Is this flower pretty?... Do you see the ugliness within this flower?... For how many days will it be pretty?... What will it be like from now on?... Why does it change so?... In three or four days you have to take it and throw it away, right? It loses all its beauty. People are attached to beauty, attached to goodness. If anything is good they just fall for it completely. The Buddha tells us to look at pretty things as just pretty, we shouldn’t become attached to them. If there is a pleasant feeling we shouldn’t fall for it. Goodness is not a sure thing, beauty is not a sure thing. Nothing is certain. There is nothing in this world that is a certainty. This is the truth. The things that aren’t true are the things that change, such as beauty. The only truth it has is in its constant changing. If we believe that things are beautiful, when their beauty fades our mind loses its beauty too. When things are no longer good our mind loses its goodness too. When they are destroyed or damaged we suffer because we have clung to them as being our own. The Buddha tells us to see that these things are simply constructs of nature. Beauty appears and in not many days it fades. To see this is to have wisdom. 

Therefore we should see impermanence. If we think something is pretty we should tell ourselves it isn’t, if we think something is ugly we should tell ourselves it isn’t. Try to see things in this way, constantly reflect in this way. We will see the truth within untrue things, see the certainty within the things that are uncertain. 

~ in The Four Noble Truths, from Living Dhamma, by Ajahn Chah ~ 

Living on the Edge

Every moment,
living on the edge
between the misplaced hope
for a pleasing life always,
and the very real possibility of hell,
just like that.

Techtonic shifts,
the earth's does not care
about 'me'.
One day, old age and death
shall come and do their job
When, how, there is
no knowing.

As much as 'I' recoil
at the idea of pain,
there is no protection
to be had.
Each day, plenty of reminders
that fate's got no feelings.

Many brothers and sisters
bleeding, everywhere I turn
I see the anguish in their eyes
and I hear their silent screams
Gone over the edge,
they have, with not a chance
of returning.

I am learning my lesson:
no point in getting carried away
thank you very much
for every sweet moment,
with a grain of salt
'cause that's life.

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.

Look At Me

Here is a gift, given to me by Jon, one of the readers of Mind Deep, who got it from another blogger. This is a gift that is meant to be shared:

(Kate the writer of this poem, was unable to speak but occasionally seen to write. After her death, her hospital locker was emptied and this poem was found.)

What do you see nurses what do you see?

Are you thinking when you are looking at me... A crabby old women not very wise,

Uncertain of habit with far away eyes, who dribbles her food and makes no reply, when you say in a loud voice 'I do wish you'd try'

Who seems not to notice the things that you do and forever is losing a stocking or shoe. 

Who unresisting or not let's you do as you will, with bathing or feeding a long day to fill. Is that what you're thinking is that what you see? Then open your eyes nurse you're not looking at me.

I'll tell you who I am.... As I sit here so still, as I use at your bidding and eat at your will. I'm a small child of ten with a father and mother, brothers and sisters who love one another. 

A young girl of sixteen with wings on her feet, dreaming that soon now a lover she'll meet: A bride soon, at twenty my heart gives a leap. Remembering the vows that I promise to keep.

At twenty five now I have young of my own, who need me to build a secure happy home. A young women of thirty my young now grow fast bound to each other with ties that should last. At forty my young ones now grown, will soon be gone but my man stands beside me to see I don't mourn.

At fifty once more babies play round my knee, again we know children my loved one and me. Dark days are upon me my husband is dead, I look at the future, I shudder with dread. For my young are all busy rearing young of their own and I think of the years and the love I have known.

I'm an old women now and nature is cruel, 'I' is her jest to make old age look like a fool. The body it crumbles, grace and vigour depart. There now is a stone where once I had a heart. But inside this old carcase a young girl still dwells and now and again my battered heart swells. 

I remember the joys, I remember the pain and I'm moving and living life over again. I think of the years all too few- gone too fast and accept the stark fact that nothing can last. 

So open your eyes nurses open and see, not a crabbit old women, look closer- see ME.

Wow!

Life's Not Fair and Other Wisdom

My friend who works with me told me she was sad. "There is just so much suffering out there." Her job is to welcome enquiring families looking to transition their loved ones to an assisted living place. Listening to her stories for the week, I was struck by the cruelty of life for some of us, particularly towards the end. They are 59, 86, 45 , 61, each with his/her own tragedy,  a massive stroke, Parkinson's, a bad fall, Alzheimer's. Different blows, same devastating results: body, broken; mind, failing; dreams, halted; savings, wiped out . . . 

There is no telling which one of us will be dealt a bad card, and when. 

Meanwhile, appreciating what is being given, and could be taken away, any moment. The ability to walk. The pleasure of a perfect spring day in San Francisco. The satisfaction from meaningful work. The joy of friendships. The safety of a good mind. The sanctuary of my own home. The energy of youth. 

And most of all gratitude for the sinking realization of impermanence, and the gift of wisdom.