A Dementia Evaluation Tool

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Dementia and Alzheimer's

How do we know where someone is within the world of dementia? It's as varied as the people experiencing it. 

Some people can talk about it. Some can even say, "I have Alzheimer's."

Others don't really know they have it. Or, it's too shameful to say out loud. 

The Greatest Generation

Our younger generations think everyone can say anything about everything, at any time, wherever they want. There seems to be a serious lack of verbal filters now-a-days. 

In contrast, our older generation, often referred to as The Greatest Generation, is our World War II generation. These parents of the Baby Boomers – they don't really talk about things. 

Like when they returned from World War II.

They didn't talk about it. They came back and went to work. They used the GI Bill, pursued education, bought houses, started families and got busy creating the middle class in America.

But, they didn't talk about it. 

Most of them also don't talk about end-of-life processes and many don't admit dementia.

Dementia Ravages The Mind

Furthermore, if they are suffering with dementia, their ravaged minds often don't allow them to articulate the process. This disease strips away the very neurons they need to describe it to us.

We lack any lab tests that can tell us where we are in the wide ranges of dementia. No enzyme level or blood test can identify its degree of severity.

So, how do we evaluate where they are? How can we talk about it amongst family members and with healthcare providers?

The use of vague terms like "late stage dementia" versus "end stage dementia" are frustratingly unhelpful. How do you really define late stage or end stage?

How do you define moderate or severe cognitive disease? They are all nebulous descriptions at best, subject to each person's interpretation and qualitative view.

We need something quantitative, something we can all see and agree upon. 

The FAST scale is just that. 

FAST = Functional Assessment Scale Tool

It was exasperating when we met with my mother's neurologist and he told us, "Well, she is probably in late state dementia, but not yet in end stage."

Excuse me? And just what is going to tell us when she is in end stage?

He didn't have an answer.

We left his office and vowed never to go back. It was a waste of our time and money just to have him tell us she has dementia. Yeah, we already knew that.

The greatest help came when the Palliative Care Nurse Practitioner presented us with the FAST scale. Finally, something we could quantify.

Here was a way to make sense of this intangible, yet devastating, disease. We were grateful that we could see where our loved one fell on the scale. Family members could discuss it with clarity.

"Here's where we are. Here's where we're going."

We didn't know how fast or slowly we'd get to the various stages, but we could see the inevitable steps that were coming.

And we could see the end result.

Stages Of The FAST Assessment

As shown on the FAST scale, Stages 1 through 5 are simple numbers with a description. Once you get to Stage 6, it breaks down into categories of 6a through 6e. Then, at Stage 7, it is divided into 7a through 7f.

When someone enters Stage 6, Palliative Care might be an option. Once someone enters into Stage 7, it is usually considered appropriate to be in Hospice. 

If you know anyone with dementia, take a look at the FAST Scale. It clarifies where your loved one is with the disease process.

The FAST scale provides a useful tool when we communicate with healthcare providers. Better healthcare decisions are made when we are all on the same page and use the same terms.

FAST scale for Alzheimer's Disease

 

The Myth Of Not Aging

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Myths About Aging

Pick up any article about aging and you'll see that 50 is the new 30 and 70 is the new 50.

As Baby Boomers head into, dare I say, old age, they're approaching it like they've attacked everything in their lives: head on and with a determined, "We're gonna change this!"

Have a good attitude!

Do this exercise!

Drink that vegetable juice!

It will keep you young! You won't age!

How many other products and ideas can you name that you "should" be doing? One more face cream, one more lip filler or Botox treatment, one more yoga pose. If you could just do one more something, then maybe you won't die. 

The Baby Boomers' can-do attitude worked in the 1960s, many things did change. And it will even work now, 50 – 60 years later, but only up to a certain point.

 
 

The Card Of Death Is Still In Play

We will still experience aging. We will still die.

Perhaps Baby Boomers will promote changes that allow for better measures to prevent extended suffering. We hope they will add enough voices that aging people will have a better quality-of-life and have more end-of-life choices available to them.

With all of our advances in medicine, we are able today to force human bodies to stay on the planet, whether they should or not, long after our bodies would have naturally let go. Then, there's the added complication of dementia that strips away our ability to have a vote in the matter. 

So, we are left to ask the difficult questions. When is it simply too much?

When are we needlessly suffering? 

When do we say a last good-bye? 

Everyone Will Die

There is not one physical body that has not slipped off the mortal coil of old age and into death. There is not one "attitude" that stopped anyone from dying eventually.

Somehow, when we die earlier, we berate ourselves for not being able to muster up "enough right attitude" to prevent it, when in fact, it was the natural process of the break down of our bodies. Not due to our attitude at all.

I don't think we have to worry about sending old people off to their demise based on the criteria of age alone. However, we have to have some frank discussion about how we will define qualify-of-life.

 
 

We Are Mortal

Atul Gawande explores the many facets of aging and end-of-life decisions in his book, Being Mortal: Medicine and What Matters in the End.

This book was recommended to me by the eye specialist treating my mother for wet macular degeneration. In his specialty, the majority of his patients are in their last 10 years of life. His entire staff read the book to better help and understand their patients. 

Although trained as a surgeon, Gawande writes at a level that all of us can understand. He breaks down the aging process of our bodies so that it makes sense. No, we can't stop aging, but we can help. If we have an idea of what's coming, we can take steps to prepare for it.

He's not afraid to ask the question: how are we going to die? How do we die when so many interventions exist that can force us not to? 

Gawande explores this slippery slope that medicine finds itself on. His book is not about giving us an answer, but rather increasing awareness to better be able to make decisions for ourselves and our loved ones. 

Acute Care Versus End-of-Life

I'm a Women's Health Nurse Practitioner and all my healthcare practice is about "fighting the good fight" – doing everything to fix and heal my patients and beating back death at every step.

As my mother experiences an extended end-of-life process, this book helped me to understand the breakdown happening in her body. It helped me to see the parts of aging that I can't fix.

Being Mortal even provided a sort of comfort that I wasn't failing in my mother's care. Gawande describes how the aging process profoundly effects each and every organ. No part of us is spared.

Being Mortal: A Must-Read Book

If you are aging, or if you know anyone who is aging, Being Mortal is a must-read.

And since we're all aging, no matter what we may think, we all need to read this book. 

It's worth more than one read.

 

Old Men And Disrupted Sleep

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Old Men And Disrupted Sleep

Old men pee in the middle of the night,
Oh yes, and go mad. That, too.
There is no kingly howling to their visit to the loo.
Just a shuffle, groping for a light, then back to bed.
Perchance to dream, but probably not.
A fleeting thought escapes: Is this it?
Is this all there is to life?
A turn into the pillows carries them back to a land of sleep
Where daughters never betray them and
Glory fills the mountains with the sound of their name.
Souls grow weary of this mortal coil that binds.
Time to slip off that thread, hopefully, without too much madness.


–Leslie Anneliese 

 

Poetry And Creativity

This poem was born out of an on-line chat with fellow meditators on the topic of waking up in the middle of the night. I offer it with a bow to the powerful poem, Old Men Go Mad At Night, written by Tennessee Williams in 1972 with references to Shakespeare and King Lear.

 
“Old men go mad at night
but are not Lears”
— Tennessee Williams
 
 

Fading Flowers And Love

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Flowers From Beginning To End

“When you love life totally, how can you avoid death?

You have to love death also.

When you love a flower deeply, you love its withering away also.

When you love a woman deeply, you love her getting old also, you one day love her death also. That is part of her life, part of woman.

Old age has not happened from the outside, it has come from the inside. The beautiful face has become wrinkled now – you love those wrinkles also, they are part of your woman.

You love a man and his hair has grown white – you love those hairs also. They have not happened from the outside; they are not accidents.

Life is unfolding and now the black hair has disappeared and the gray hair has come. You don’t reject the gray hairs, you love them, they are a part of the man.

Then your man becomes old, becomes weak – you love that too.

Then one day the man or the woman is gone – you love that too. ”
— Osho
 

What better teacher than Nature to capture the essence of birth and death and how love hums at the heart of it all?

Observing nature in my backyard, I decided to photograph the blossoming flowers. I positioned myself to capture their humble beginnings of greenery. Eager buds stretched forth as they pushed their way into the world. Twirling out of a spiral, they opened their petals to become the flower they were meant to be. 

Everyone loves flower buds and blossoms.

As I documented their journey through the lens of my iPhone camera, I began to wonder – why isn’t the entire process considered beautiful?

I came upon this quote by Osho and it captured what I was feeling. He gets to the core of the issue. We can love the entire process from beginning to end. We don't have to be limited only to the parts that our limited minds deem to be pretty.

 Even fading petals have a song to sing, don't they?

See the unfolding of the flowers in these photos:

Here, a flower opens its petals from within a spiral.

 Now the flower opens wide in a blaze of color and a fire burns at its center.

 The petals are shifting past their prime and begin to curl at the edges.

 The flower fades further, petals crumple more.

 The full glory of the flower is gone. One tenacious petal remains attached.

 All the petals are gone. Only the glowing ember of a flower remains.

Love From Beginning To End

As flowers bloom, age and wither, beauty can be seen in all the steps of the process.

Love is at the heart of the journey. A love without judgment of whether they’re at the beginning or the end or how frazzled we look when it’s all over. We tap into natural cycles and the love that connects us all.

In our meditations, we become aware of the conditioning and judgments we place on ourselves regarding what we can or cannot love.

We allowed to love the birth, but not the death. Yet, the dying process is our ultimate journey on Earth. It's not about being in love with death itself, but rather, holding love through the “final” process that awaits all of us.

Forever Morning Of Awakening

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I Wish It Could Be Morning Forever

Is it truly possible that in all these years of my life, I have really not done anything?

Isn't it strange that after achieving three university degrees, publishing two articles in medical journals, singing with the San Francisco International Opera, working in the legal field, living abroad, and providing medical care for thousands of patients, that you could feel like, well... haven't done that much.

It's as if that was then, and this is now.

No One Described This Part

No one tells you about this getting older part when everything turns inside out. When all the accomplishing, the achieving, the goals obtained, start to fade into dust-like particles.

Don't get me wrong, I'm really glad I did all those things, it's just that now...

What Will Be Of These Last Years Of My Life?

Assuming all goes well, knock on wood, I'll only have about another 20 to get things done. And even considering that, who cares what a 70-year-old says or does?

No one.

I'm already experiencing that in my 50s, it can only go down from here. Yikes. I feel like I've only got a day left to do everything.

Hence, why I want it to remain forever morning.

Early Morning Is Mystical

A forever morning evokes a precious jewel box, tucked inside is the sparkling promise of an entire day. The jewel held inside has awakening, coffee, projects, and plans. Everything can still be accomplished.

Heralded by those first rays of a dawning sun, an early morning is rich with secrets of all that is fresh and new. Yesterday's heavy energies are muted by the softness of a healing night that has passed.

This magical prelude to the day is brief. I drink it in with my coffee and savor the fleeting sparkles of the day's promises.

Wishing for it to linger, I attempt to persuade these ephemeral moments to tarry, but the steadfast sun pays me no heed and moves ever upward in its determined climb.

Full morning bursts upon the scene accompanied by a din of noise pouring forth from the flurry of activities.

Gratitude Each Morning

Each morning graciously presents another opportunity to travel from sunrise to sunset.

Awakening. In hazy dreams of awakening, we awaken to the morning. We awaken to the meaning of our lives.

We are striding into a forever morning of awakening. Sometimes, we're stumbling. It's okay. Keep going.