The Dharma Of Alzheimer's & Dementia

This talk combines the wisdom of 15 years of work with patients with Alzheimer's Disease along with the practice of Buddhism. The talk includes some ideas and tools on how to wisely prepare the mind and heart for dementia. This talk is dedicated to my father who died of Alzheimer's Disease.

Transcript

As Buddhists,

It's not unlikely that we've contemplated death as a practice.

But how many of us have taken on contemplation of Alzheimer's or losing your mind?

In my life,

I've had two loves since I was 19.

The first was Buddhist practice,

And the second was taking care of Alzheimer's patients.

The first job I really loved was when I was 19.

I went to work in a nursing home that was near where I lived.

And because I was new there,

They put me on the most difficult floor,

Which was the one with all the Alzheimer's patients.

And they put me on the ninth shift.

And the first night I was working,

It was about two in the morning,

I was changing someone's bed and I felt this tap-tap on my shoulder.

So I turned around and there was this tall,

Skinny lady,

Stark naked,

And she just burst out laughing when I turned around.

She had this beautiful twinkle in her eye,

And then she ran off down the hall.

And I went running off and chased her and brought her back to her room,

Got her dress,

Put on her nightgown again.

And in those days,

People,

When people wandered,

They tied them in bed with these soft restraints,

Or posies,

They called them.

So I put a couple posies on her,

Put her back in bed,

Three,

I think,

Tied way underneath the bed.

Then about an hour later,

At three in the morning,

Tap-tap-tap,

There she was again,

Stark naked,

Laughing,

Running down the hall.

This went on all night long.

We started calling her Houdini,

Because we could never figure out how she'd get out of these posies.

And that was the beginning of my love affair with this incredible joy and openness and beauty of Alzheimer's disease.

And over the 23 years that I've worked in this field,

I've had an incredible variety of roles,

From first being a nurse's aide to being a nursing home social worker to being part of research studies on Alzheimer's disease,

The University of Washington,

To actually writing a booklet that was published nationally,

And to working directly with caregivers.

When I was preparing this talk,

I realized that I have my own refuge tree.

I'll leave this up here after the talk if you want to look at it.

But these are five people that,

For the last few years of their life,

I was their caregiver,

And I helped them die.

And every one of them,

Except this woman way down here,

Had Alzheimer's.

So basically,

I was kind of like their Alzheimer's midwife,

But in a reverse way.

And an interesting note is this woman at the very top who has dark hair.

She was the press secretary for five presidents,

And she was best friends with Grace Kelly,

Went on her honeymoon trip,

And also was friends with Marilyn Monroe,

And she had a radio show in Washington,

D.

C.

So some pretty amazing stories.

But I don't really want to tell you stories tonight,

Although that would be fun.

I'd like to look at the practice of Alzheimer's from a Buddhist standpoint.

How does one practice Alzheimer's?

It's really a practice of seeing into the five aggregates.

The Buddha said,

And what is not yours,

O yogis?

Material form is not yours.

Abandon it.

Feeling is not yours.

Abandon it.

Perception is not yours.

Abandon it.

Mental formations are not yours.

Abandon them.

Consciousness is not yours.

Abandon it.

When you have abandoned it,

That will lead to your welfare and happiness for a long time.

The practice of Alzheimer's is really about looking deeply into these five aggregates and abandoning them.

One of the first books on Alzheimer's disease was called The 36-Hour Day,

Which gives you a sense of what it's like.

Although I realize maybe some of you might be able to call your retreat the 36-hour day,

Too.

Some days seem that long.

First of all,

Briefly,

What is Alzheimer's disease?

It's a disease.

It's related to aging,

And it's a disease of the brain where the brain begins to shrink,

The cells begin to die,

The neurons begin to get tangled,

And they get plaques.

Basically,

The brain can't function very well.

And you might say,

Well,

You know,

Death,

Everyone's going to die,

So it makes sense for me to practice that.

But Alzheimer's,

You know,

It doesn't run in my family.

I probably won't get it.

However,

Think about this.

At age 65,

9 percent of us will have Alzheimer's or some related dementia.

At age 75,

25 percent of us will.

And age 85,

Which many of us will live to,

50 percent of the people in this room,

50 percent of us will have Alzheimer's disease or some kind of dementia.

That's a lot.

And even if you don't have it,

You'll probably be taking care of someone who does,

Or you'll know someone closely who does.

So tonight it's about helping you to get ready.

Be ready for looking at this illness from a Buddhist perspective.

What's it like to have Alzheimer's?

As I'm looking out into the crowd,

I'm thinking about Kelsey and the meditation cushion.

However,

I don't know where I am,

And then I'm thinking about Deborah or Edwin,

But who knows what's happening in the clouds today.

That's what it's like to be in the mind of an Alzheimer's patient.

It's like,

What is happening?

I'm thinking about the walk that I took,

But yesterday for lunch,

Where did we go?

What happened?

Can I know why I'm sitting?

And then,

Just a series of things that don't get connected,

But you,

When you were hearing me,

You were able to use logic to understand,

Oh,

At some point,

This isn't making sense.

And then your mind could recover through logic.

But with somebody with the disease,

There's no recovery.

Logic doesn't come in.

Basically,

We begin relying on our mind when we're about five years old.

Our mind becomes our whole world.

And part of the contemplations of Alzheimer's are beginning to not rely on the mind as much,

Beginning to train ourselves to work with this.

Unfortunately,

I think in Buddhist practice,

There's a lot of emphasis on relying on the mind.

So,

In some ways tonight,

Just giving you some ideas of kind of how to look at things in a different way.

The disease generally comes in two parts,

Although many people have staged the disease and it can have as many as up to eight stages.

But generally,

The first part is knowing that you don't know.

And this is the most difficult time,

Because basically,

You're having to lose your clinging to the mental formations.

You only have these mental formations,

Perception,

And also consciousness as part of the five aggregates.

And there's that losing of that connection with these,

Especially all the different qualities of mind.

In this space of the disease,

There's with the person that has it,

There's a lot of anger,

A lot of frustration.

And oftentimes denial,

Too.

There's a wonderful book by a man named Carl Henderson.

It's called A Partial View.

And what he did is over a period of years,

And his family helped him,

He documented what it was like to lose his mind.

He documented the phases of the disease.

And he called it mind paralyzed.

And he also talked about it was like having a partial view all the time.

He just couldn't quite see clearly.

I'm going to read some from this book tonight.

But the first thing he said about a partial view was this.

Keep in mind that everything you can say or do is partial.

You're probably never going to get a sentence,

A nice clean sentence that says everything you want to say.

Those sentences are very rare.

Every time I have a feeling that I'm losing,

Losing contact,

Losing my brains,

Whatever it is,

I panic.

I think the really worst thing is you're so restricted,

Not so much by other people,

But you just feel that you are half a person.

And you so often feel that you are stupid for not remembering things or knowing things.

You're restricted in very simple things,

Like how far you can walk without getting lost,

When you can do something.

You always have the feeling it's pretty partial.

And you always have the feeling,

I know I do a lot of times,

That you just haven't done it right.

So there's that frustration.

Actually,

The Buddha would probably say that we all have a partial view because of our delusion and greed and hatred.

So in some ways you could look at this talk tonight as looking at how our minds through delusion and greed and hatred already have Alzheimer's.

Compared to the Buddhist mind or that of an arahant,

We look like Alzheimer's patients.

So you don't need to pretend.

So what practices would allow us not to rely on the mind?

What things would allow us de-conditioning,

That clinging to the fourth aggregate of mental formations?

The first contemplation that goes with this partial view stage is that of seeing the stories of the mind.

Deepa Ma said to a student once,

Your mind is all stories.

She didn't say your mind is mostly stories.

She said your mind is all stories,

Everything.

When I first heard that,

That really struck me.

So what if you were for the next 24 hours to treat your mind like it had Alzheimer's disease and that all these stories were made up?

That's what a lot of Alzheimer's patients do.

They just bring stories from all over the place.

You don't even know what's what.

Whatever they heard,

It becomes their story.

Joseph has this practice where he says to you when you have a lot of thought,

Pretend like your thoughts are coming from the person next to you.

Well,

Just pretend like everything you're hearing is coming from someone with Alzheimer's disease.

How would you be?

What would it be like?

Well you'd listen,

Of course,

And you'd be courteous and compassionate,

But you wouldn't put stock in what you were hearing.

You wouldn't sink into it.

You wouldn't take it so seriously.

You wouldn't buy into it.

So that's a practice of Alzheimer's,

Not buying into your stories.

Carl again talks about this.

When you have Alzheimer's,

There are a lot of things you have to get used to.

One of these things is just being dead wrong.

I've learned not to argue with anybody about the outcome,

Say,

Of a baseball game.

I have a hard time knowing sometimes whether it's real or not.

Even things that you have seen very recently and very clearly you may not have seen at all.

You just think you saw them.

You dreamed you saw them.

In some ways that could be the Buddha talking to us.

You just think you saw them.

You dreamed you saw them.

It's waking up.

When he talks about awakening,

It's awakening from the dream,

The illusion,

The deluded mind.

So seeing through those stories,

Our IMS story,

Our male-female story,

Our family story,

That they're insubstantial,

They're like the ramblings of an Alzheimer's patient.

The shame,

The I'm no good story that Matt talked about.

Actually,

I have an interesting story about the I'm no good thing.

When I was working in a nursing home,

There was one woman.

She had had a stroke.

Oftentimes with stroke patients,

The result of their stroke is they can only repeat one phrase over and over again.

They don't really know what it is they're saying.

It doesn't really have any meaning.

It's just this phrase.

It's like a record that gets stuck in a certain place.

Unfortunately the phrase she got stuck with was I'm no good.

So she would sit there.

For some reason they always put her out right in the front where everyone was.

All day long she would sit there and she'd say,

I'm no good in this really loud voice.

When you work there you just get used to it and you just totally ignore it.

It was really fascinating for me to watch new people would come in and she'd go,

I'm no good.

I'd go down next to her and they'd go,

Oh honey,

You really are good.

You shouldn't say that.

And they'd talk to her for like 10 minutes trying to convince her to feel good about herself.

And then a minute later they'd leave and she'd start right up.

I'm no good.

And what they hadn't seen is they created a story out of it and she didn't have one.

There was no story there.

Seeing if you can't do that with your stories.

It's just this lady with stroke just saying the same thing over and over.

Another practice for this partial mind phase is about being at ease with chaos.

And I'm just going to give you two little things about what this is like from an Alzheimer's patient's perspective.

It relates to time and time gets kind of strange at this phase.

Carl says,

The scariest thing I guess is the fact that I have no sense of time.

I have not the slightest idea,

My brain doesn't,

Of what's 10 hours away or two hours away.

Then in relationship to that he says,

My wife has gone to a coffee clutch with her girlfriends,

Which is perfectly all right.

But one of the first things that I noticed as Alzheimer's began to creep up was that when my wife was playing bridge,

This was a couple of years ago,

And I was at home,

I got really upset.

And the biggest reason was I couldn't contact anybody.

I really don't know how to operate little things,

Like even a TV radio.

Everything seemed to be wrong that day.

And it's a day I'll never forget.

I was so lonely and so frustrated that I called the police to show me where my house was or to show me if somebody was home.

Imagine that,

What would it be like to be at home and to call the police because you didn't know if anyone was home or where you were.

And yet he learned to be okay with this too.

He said,

I can't remember what month I'm in or how old I am,

But I guess it doesn't make all that much difference.

It's part of the mystery of life.

You could smile about it,

I guess,

He said.

It's a little bit like when you're moving and all your boxes are in disarray and you don't know where anything is and you can't find your toothbrush or something to eat off of.

Can you feel what that's like not knowing where anything is and yet still drop down into equanimity?

Being okay,

Even that.

It's about letting go of even mindfulness.

Mindfulness is just another one of the fourth aggregates,

Part of the fourth aggregate.

So what are you going to do when mindfulness is not there because obviously it's not there for Carl.

What can you find that's deeper than mindfulness?

See if you can't feel it now.

What can you rely on that's deeper than mindfulness?

What's here for you when the mindfulness is gone?

What will be here?

What can you trust?

Being this and being able to rest in this when the time comes.

Being able to go deeper than your mind.

Being able to trust in something deeper.

The second part of Alzheimer's disease is being absorbed in the illness and not really even knowing you have it anymore.

One man described his wife as a far gone.

In some ways it could be seen as beyond the beyond as the Buddha says.

It could be a positive thing.

It actually is in a way and I'll point that out.

It's interesting because at this point the person with the disease isn't really clinging much anymore.

They're not going through that anger and frustration phase that I described earlier.

The memory and associations are gone and to a certain degree the clinging goes.

You can see how memory and association can fuel clinging because when there isn't that there,

Clinging drops away.

This phase for the person is a lot like death.

It's a kind of surrender into the illness although often the illness just sweeps them along like a wave.

And interestingly at this point when they're absorbed in the illness,

If they have any kind of mentally based illnesses like high blood pressure or depression,

These will often disappear at this point.

They won't need to take the high blood pressure medications anymore because they can't really remember anything and there isn't much worry or difficulty.

Unfortunately this is the time when the caregiver's practice really kicks in.

It's the time when the caregiver's feeling the most difficulty around letting go of the five aggregates.

Here's this person that they loved,

Same body,

Technically kind of the same perception,

Same consciousness,

Same feelings.

Mental formation's different but there's this confusion of like,

Well who was it I loved?

What was it I loved?

I mean if an illness of the brain can change so much,

Where was this person I knew?

It can cause tremendous grief for the caregiver at this point in time and the practice is really at this stage for them to look at the aggregates.

So Buddha talked about this looking.

Suppose that a man who is not blind were to behold the many bubbles on the Ganges as they are driving along.

After carefully examining them he would see they were empty,

Unreal and insubstantial.

In exactly the same way does the yogi behold the body,

Feelings,

Perceptions,

Mental formations,

States of consciousness,

Whether they be past,

Present or future,

Far or near.

He watches them and examines them and after examining them he sees they are empty,

Unreal,

Insubstantial.

So for the caregiver it's starting to see the reality of this and it's not easy especially if the person doesn't have a spiritual practice.

So one of the practices,

These practices I call no mind practices.

You don't even have a partial mind.

But it's being comfortable with,

And you can practice this here,

Having a simple mind.

Ukhundala,

A Burmese teacher of mine,

He often used to say at the start of a retreat or any time during retreat to practice as if your mind and body are completely feeble.

So imagine what it would be like to be doing walking from here back to your room and really have no idea where you were going.

So you were so completely with the walking you weren't also thinking about where you were going.

It's kind of like the dullard's practice,

Just having that complete simplicity.

Carl talks about it.

He says I can't cope with more than one thing at a time and that one thing has to be very easy to understand.

So allowing your mind to settle into that much simplicity.

He also says about speed and rushing.

When someone wants me to hurry up,

I can't hurry up.

There's no way to hurry up.

I can't be rushed because I get so doggone confused I don't know what I'm rushing about.

Imagine what that would be like to not be able to rush because you didn't know what it was.

In the later stage of Alzheimer's it gets so simple that you can't put a plate of food down in front of someone with several foods because they get too confused.

They don't know what to do when they see three foods at once.

So you have to take one food and put it in front of them and then they eat that and you take the plate away.

You come back.

You put another food down.

So it's having a mind that's that simple.

Could you do that?

You drop the thinking.

Just be so focused,

One thing,

One thing.

One of the benefits of the disease is Acharya Samadho told a story about visiting Beatty Griffiths.

You might have heard this story.

Beatty was a spiritual teacher who had a stroke that wiped out about 50% of his memory.

And Beatty was just really happy when Acharya went to see him.

He said,

Beatty,

You're so happy.

You just lost half your memory.

And Beatty said,

Well,

Yeah,

But now I have 50% less to worry about.

So another practice for the latest stage,

The last,

Very last part of the disease process.

It's the most beautiful of all the practices,

I think.

It's about total trust.

And I call it free falling into mercy,

Free falling into the mercy of others.

Could you do that?

There's a book that's been popular in the last several years called Counting on Kindness.

It's about the care of Alzheimer's patients.

And it really summarizes this phase.

You have to completely count on kindness.

Could you and will you be ready to completely count on the kindness and mercy of others?

It's becoming open and transparent like a child,

Like this woman,

Marcella,

The one that tapped on my shoulder and ran naked down the hall.

And incredible openness and trust.

She was like a child but not childlike in a way because she had a full history.

She had raised children,

Had a job.

She lived a wise and wonderful life.

And it was all gone.

It came back full circle to this incredible childlike openness,

Which is really a metaphor for our spiritual path.

It's a metaphor.

Jesus talked about it,

Actually.

He said,

Truly,

I tell you,

Unless you change and become like children,

You will never enter the kingdom.

Getting back complete circle with all the wisdom and then dropping into that trust and openness.

Teresa de Lisieux,

A famous saint in the Catholic tradition,

She often said her practice was about becoming a little one.

I really like that,

Being a little one,

She said.

And she was quite little.

It was very sweet.

She said,

Holiness does not consist in this or that practice,

But in a disposition of heart which remains always humble and little and trusting to audacity in the goodness of all that is.

Humble and little and trusting to audacity.

Can you do this?

Will you be able to?

What would this be like?

I'd like to lead us in a final practice for understanding Alzheimer's and being ready.

And that's the practice of this complete dependency on the mercy of others.

So just imagine what it would be like,

What it was like at a time maybe in your life when you felt very dependent.

Calling forth that feeling.

Maybe you were in an accident or you had an operation or you were lost somewhere.

Just that sense of having to trust in the mercy of others.

And as you feel that feeling,

I want you to imagine that after this talk,

In a few minutes,

In five minutes or so,

Someone is going from this room is going to have to take you back to your room because you're not going to know or be able to get there.

And what that would feel like.

And on the way to your room,

You'll stop in the dining room and they'll sit you down to give you some miso broth,

But you can't feed yourself.

And everyone can see that.

And you're counting on their kindness to make sure when they put the spoon in your mouth,

They don't hurt you.

They're not too fast.

That you don't choke.

That you get enough or not too much.

You're counting on their kindness to know what you need.

And then they take you back to your room.

And there they take you into the bathroom to brush your teeth.

And you're just hoping that they're kind and gentle.

And they take you to the toilet.

You can't do this even yourself.

Imagine what this is like.

They have to wipe up after you,

Get you off the toilet,

Take you into your room.

And you're completely dependent on them to undress you and put you in your night clothes.

You have to completely trust in what they're doing and that it'll be okay.

They put you into bed to let you go to sleep.

And you're glad that you could count on their kindness.

This is complete surrendering body and mind.

Have to completely surrender to them.

Letting go of everything.

The Buddha said,

All that is mine,

Beloved and pleasing,

Will become otherwise,

Will become separated from me.

And what is not mine?

Material form is not mine.

Feeling is not mine.

Perception is not mine.

Material formations are not mine.

Consciousness is not mine.

Knowing this will lead to your happiness and welfare for a long time.

So being ready.

Being ready to see through the stories.

Being ready to face complete dependency with equanimity.

An open heart.

An open heart.

Over and over.

Consciousness is a disposition of heart which remains always humble and little and trusting to audacity and the goodness of all that is.

Let's sit for a minute.

Thank you for listening.

To learn how you can support the teachers and Dharma Seed,

Please visit dharmaseed.

Org.

Reviews

That was beautiful. It's hard to capture the mood of Alzheimer's and you did. I eat dinner with my husband who lives in memory care and a posse of ladies who are kind and lovely and very confused and quietly or loudly anxious. My husband dementia is Lewy Bodies so his issues are a different shade of confused.

This is the best explanation I have heard of what this disease looks like for caregivers and people with Alzheimer’s. Thank you. I appreciate your kindness and perspective. Namaste.

Thank you for bringing some peace and calm to what feels like a world of suffering and horror at the moment. I appreciate your wealth of experience and insight.

Thank you for your gentle, and tender care , for tour service.

Helpful calming truth Thank you