At The Center: Dementia (And) Awareness

Hello.

The topic of this talk is dementia and awareness,

Both awareness of dementia in society and the subjective awareness of it for those living with its cognitive challenges.

Today I will introduce you to one of my most important teachers from the time I spent at an adult daycare center,

Mrs.

M.

Mrs.

M.

Taught me important lessons about the capacity,

If not the necessity,

For connection and friendship that continues across the lifespan.

With her in mind,

I am here to dispel the idea that dementia is a death sentence,

Something to be talked about in hushed tones or not at all.

This does a great disservice to people living with dementia and their caregivers who sometimes struggle far too much without the support of an educated community.

Dementia as a dooming diagnosis also conflicts with my observation that people remain creative individuals even at the end of life.

And I believe these lessons from my teachers at what I deliberately call the center will illustrate that point.

It may seem odd to encounter a talk about dementia on a meditation app.

My reason for addressing the Insight Timer audience has a lot to do with what first brought me to this app in the first place.

I turn to meditation in part because of the stress of my job as a caregiver,

But most caregivers find themselves in that role without applying for it,

And certainly without the compensation and regular periods of rest that I received in my professional role.

I can only assume that there are people here who are in a position of caring for someone and find moments of sanctuary in the guided meditations or soothing music shared by Insight Timer teachers.

I am not a meditation teacher and even less of a musician.

I am one of millions of people who have found themselves laid off from work due to the pandemic of 2020.

My physical isolation is bearable.

But what about the caregivers whose emotional isolation has little to do with any virus?

From what I have witnessed in five years of work in dementia care,

The presence of dementia in any society is real but often obscured.

I don't think that's healthy or helpful for any of us.

You might have heard of diseases like Alzheimer's disease,

Especially when celebrity deaths momentarily put dementia in the spotlight for a few days.

But maybe you don't know the difference between Alzheimer's disease and dementia.

To clarify,

Alzheimer's disease is one particular cause of dementia,

But there are other causes too,

Related to different pathological processes,

Perhaps in different parts of the brain.

And then there are different progressive stages of impairment in the presence of the disease.

And so in a room full of people with the same diagnosis,

Say of Alzheimer's,

There is a spectrum of possible expressions of it.

The point is,

People living with dementia are individuals and deserve to be encountered as individuals and contributors to their communities,

Whether or not their gifts are considered to be valuable to society.

I'll argue here that the lessons they teach about life in the present moment are especially worthwhile.

Besides the limited awareness in society about what dementia is and isn't,

Another characteristic of the dementia experience is how much the person living with cognitive dysfunction is aware of their impairment.

The dozen or so people I met at the center on any given day spanned diagnoses and some were undiagnosed.

That was quite common,

Especially if they had never seen a neurologist or gerontologist who would be familiar with the cognitive profiles of older adults.

There are also plenty of cases of diagnoses being made,

But not passed on to the person with dementia,

Either because the doctor does not want to have a difficult conversation or the family does not want the person to know.

As a reminder,

I don't consider myself a medical professional.

On the other hand,

Medical professionals are not necessarily aware of how people with a clinical diagnosis actually live with dementia.

Some of the clients at the center were alert to their condition because of their own subjective experience.

My teacher,

Mr.

P,

Confided in me that he felt like his brain was like Swiss cheese,

Full of holes.

At first,

And sometimes later too,

He was not too happy about his wife dropping him off at the center twice a week.

Mr.

R was a veteran who had been found living in his car.

He embraced the social atmosphere of the program,

Even as he scoffed at the bracelet he wore that identified him as someone living with Alzheimer's disease.

Another man with the same ID bracelet,

A retired church pastor,

Was deeply troubled by it and fidgeted with the unwelcome metal cuff,

Often overcome with the sadness of becoming a burden to his wife and children.

And then there was Mrs.

M.

She's the artist of the image you see associated with this talk.

As you will see,

Mrs.

M was less aware that anything at all was a miss and would not have believed anyone who told her she was anything but healthy.

She became my teacher the day we met,

When I walked into the daycare center intending only to become a volunteer.

I had just left a life in Italy and my heart was broken.

For months,

I couldn't walk down the pasta aisle at the grocery store.

Suddenly,

Here was this small but mighty woman who,

Because of her Alzheimer's disease,

Had forgotten the English she had used for the previous 40 years of her life.

And so,

Beginning the day we met,

And for the next three years,

We spoke in Italian,

Hers fluid and fierce,

Mine broken and sad.

I could listen in Italian,

However,

And enough of her words made sense that I knew how best to respond,

Even if it was only via facial expression,

A gesture,

Or a good squeeze of the hand.

Whenever I walked,

And sometimes danced with Mrs.

M to the ladies room,

Offering her my arm for balance and camaraderie,

She would tell me things I didn't always understand,

Sometimes because of the language barrier,

Sometimes because she was no longer making sense even to her Italian-speaking son.

On cloudy days,

When the walk across the hall was dimly lit,

She would name all of the people in her family who were dead,

Overwhelmed by having survived her grandparents,

Parents,

Siblings.

I would tell her I loved her,

Not to make her feel better,

But because in those moments,

That was my own overwhelming feeling.

It broke my heart that she felt alone.

Just maybe I knew something about that feeling myself.

As Mrs.

M and I stood close to one another at the row of three sinks in the ladies room,

Washing our hands with the water temperature adjusted first for her safety,

And then to her preference,

She would begin a new,

More public conversation with the two women she saw in the mirror.

Remarkably,

One was about her height,

And the other was about mine.

Ciao,

She would say,

With a big smile,

Nodding and making the small talk of friendly acquaintances,

Sometimes inviting the older of the two women back to her house.

And then,

As I indicated to her that the others were waiting for us,

She would wave goodbye to the two mirror ladies.

When we had returned to our private confidence on the walk back to the room,

She would lean closer and whisper to me,

Povera vechia!

That poor old woman.

Because that old woman back there in the bathroom mirror,

It certainly wasn't Mrs.

M.

I mentioned this to her son once,

And he nodded in exasperated understanding.

He told me he had to cover the mirror in her bedroom at home,

Because she did not recognize herself in the image that stared back at her,

And she thought there was someone following her.

She was approaching the age of 90 when we met.

In fact,

We celebrated her 90th birthday with chocolate cupcakes in a scene that matched her youthful essence with frosted fingers and lots of laughter.

Once,

At the end of a busy day,

She looked at me,

Tilted her head in a questioning manner,

And asked in Italian,

How old are you?

Quanti ani ai,

She asked,

And I was able to answer in Italian.

Quarante cinque ani,

I was 45.

No,

She scoffed.

No sembri piu giovanni,

You seem younger,

She said.

And to that,

I could only reply that she seemed younger,

Too.

Thank you for spending these minutes with me.

I hope you enjoyed meeting my friend and teacher,

Mrs.

M.

I hope you are a bit more aware of dementia and what can be considered its gifts,

Despite or because of the presence of disease.

If you are more curious about some aspect of dementia,

I invite you to listen to my other offerings here on Insight Timer,

And I especially encourage you to meet the people in your community who are working for the benefit of individuals living with dementia and their caregivers.

There isn't a lot we can do at this moment in history in terms of embracing people,

But there are ways to accompany each other by taking an interest in the welfare of our neighbors.

This quote by Paramahansa Yogananda sums it up.

He said,

Seek to do brave and lovely things that are left undone by the majority of people.

Give gifts of love and peace to those whom others pass by.

Namaste.