I was privileged to spend some time with Michele Muir, a close friend who works for the Alzheimer’s Association Hudson Valley/Rockland/Westchester Chapter as she prepared for her photographic showing of “Every 69 Seconds: Memories of Alzheimer’s”—a photo-essay displayed at the Art Gallery of Iona College, New Rochelle, New York.

Michele is a gifted photographer who, in her work, has captured the very essence of what life is like living with Alzheimer’s.

Even the title speaks to us.  Just two years ago this photo-essay carried the title “Every 71 Seconds”—a reference to the clicking of the clock that marks the moment when someone in the United States develops Alzheimer’s.  In just two years that time has been reduced to 69 seconds—a clear indication that this disease is growing at such a rate that we can no longer ignore its powerful impact.

Michele has put a face on Alzheimer’s.  It is not a disease to be observed from afar.  It is up close and personal, touching lives, changing relationships, destroying the future.  She has captured moments that are common to those touched by this disease—confusion, restlessness, frustration.

And yet, she doesn’t stop there.  In an incredible display of black and white photographs carefully nestled among hand written comments on the walls, she goes beyond the obvious pain and loss to offer to us rare glimpses of joy, of loved ones reaching out, of gentle moments that are also part of the lives of persons living with Alzheimer’s.

A powerful message.  People are living with this disease.   Despite the fact that there is no cure, despite the fact that no one survives Alzheimer’s, Michele gives us the clear message that life is still going on, in and around this disease.  That by literally focusing on moments of joy, humor, calm, we can still honor life and celebrate its right to exist.

A true message from the heart.

Hugs,

Marilynn                                 Visit me on my website!                releasedtotheangels.com

Capturing a moment...

Marilynn with Michele Muir photographer and creator of photo-essay "Every 69 Seconds: Memories of Alzheimer's"

Art can speak.

Today I traveled to the Clay Art Center in Port Chester, New York to participate in an event entitled “Molding Memories”. Organized by Michele Muir, Director of Communications & Public Policy for the Hudson Valley/Rockland/Westchester, NY Chapter of the Alzheimer’s Association, this workshop is part of a series designed by her to touch the lives of both caregivers and their loved ones with Alzheimer’s. (I shall speak more about this series in future blogs).

No pressure. No prerequisite of talent. Just a pleasant workshop area, complete with tables, tools and slabs of clay for participants to work on. Those with Alzheimer’s (and their caregivers) could approach the table knowing that talent was not the aim here. It was simply an invitation to create and relax while discovering the soothing effects of working with clay.

I smiled as I worked the clay. Like those around me, I began with little idea of what I was “creating”. But as time passed I became a part of others who, like myself, were adding shapes and lines to the clay slab that collectively would then be glazed as a wall plaque. Round swirls, goofy figures, flowers—all were shaped and molded from the cool clay we held in our hands. But the interesting thing was that as our creating grew, so did our small talk. Those struggling to form sentences found perfect acceptance in our table’s conversation—a mixture of simple phrases, humorous thoughts, song remnants, and smiles. And slowly, as our clay slab began to take shape, I realized more than ever that creation—whether with apples or clay—is a free, joyful expression of the moment.

And Alzheimer’s is all about experiencing the joy of the moment.

Hugs,

Marilynn                                            Visit me on my website!                         www.releasedtotheangels.com

This last Sunday I was honored to be invited to the “Unite for a Healthy Future” event that kicked off the United Nations Non Communicable Disease Summit held September 19-20 in New York City.  Being a part of this welcoming committee, I began to feel the true impact that these two days will have on the fight against Alzheimer’s.

It is an historic event.  For the first time Alzheimer’s disease is being recognized by the United Nations as being a part of the world’s Non Communicable Diseases.  Now that may seem like a simple thing, but by recognizing Alzheimer’s disease as a part of this global category, a door has been opened, allowing United Nations Member States to develop effective programs to confront this disease on a world wide scale.

I sat with Mike Splaine, National Policy Advisor and ardent supporter of Alzheimer’s Disease International.  From the moment he began to speak, it was evident that his passion and dedication are a part of the driving force that is helping to bring Alzheimer’s disease to the forefront of national and international attention.

As I listened to him speak, I became even more aware of the critical state we are in:

This disease is clearly a major concern internationally.  Given that the world’s population is growing older, reports clearly demonstrate that Alzheimer’s disease is among the most significant social, health and economic crises of the 21st century.  Yet, if goverments act urgently to develop research and care strategies, the impact of this disease can be managed.

And that is where the United Nations comes in.  The recognition of Alzheimer’s disease in the UN Summit is an acceptance that aging is a global phenomenon, that non-communicable diseases reach older as well as younger age groups, and that this Summit can be a critical step for rallying global efforts to meet the needs of all age groups affected by mental and neurological diseases.

A clearly positive thing.

Hugs,

Marilynn        Visit me on my website!    www.releasedtotheangels.com

United Nations, New York City

Mike Splaine, National Policy Advisor explaining the importance of the United Nations' Non Communicable Disease Summit

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Mike Splaine, ardent supporter of Alzheimer's Disease International and Marilynn Garzione

NAPA stands for  ‘National Alzheimer’s Project Act’ and was a landmark legislation that went into effect this last January after having been passed unanimously in both the Senate and House of Representatives.   Once enacted, NAPA will create a national strategic plan to address and overcome the rapidly escalating crisis of Alzheimer’s.

But it’s just that….in the project stage.  When completed, it will create a coordinated national plan to overcome the Alzheimer crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer research, clinical care, institutional, home, and community-based programs and their outcomes.

Today I traveled to Poughkeepsie, NY to meet with Representative Nan Hayworth and others, who came to the Alzheimer’s Association Hudson Valley/Rockland/Westchester, NY Chapter to hear what the issues are that must be addressed in an Alzheimer’s national plan.  I found it so refreshing that Congresswoman Hayworth would sit down to listen to caregivers…their concerns, their needs.

Our concerns as caregivers?  We need help in knowing what to do when someone in our family is diagnosed.  We need to know that if we take this on—home care—then we are not alone, that there will be back-up information, respite suggestions, trained professionals to help us through crisis times.  We need the hope that in advanced stages, when standard medicines are no longer effective, then the FDA would create a special category that would permit late stage victims the opportunity to try promising drugs.

Representative Hayworth listened to how Alzheimer’s disease has impacted on the lives of so many, and was receptive to ideas of what to include in this federal plan.  As I listened to her respond to items proposed, I was left with the real impression that this is a first, positive step.

And if our representatives, like Nan Hayworth, then take the next step—fighting to help implement caregivers’ suggestions—NAPA will go a long way in the years ahead toward eventually eliminating Alzheimer’s disease.

Hugs,

Marilynn              

Marilynn with Congresswoman Nan Hayworth (accepting a copy of "Released to the Angels"

Come visit me at my website    www.releasedtotheangels.com

Today I again walked the same wooded path.  I smelled the fresh air, and felt a natural calm as the rising sun flickered among the trees.  And it dawned on me.  Yesterday on my walk I saw nothing. (Well, I did see a furry caterpillar rippling across the path in front of me, but this was proof of the fact that my eyes were down, not up.) 

But today was different.   Every time a thought began to creep in, I chose to brush it aside….a deliberate choice to stay in the present.  And as I looked upward and around me, inner thoughts began to fade and slowly I became aware of the calm morning unfolding.

I heard a rustling in the bushes….and nearby I caught sight of a fox running away from me, leaping high (the grass was tall) as it increased the distance between us.  It stopped momentarily to look back at me.  She would then run a little more and once again stop to watch me.  She kept running.

I say ‘she’ because soon her behavior became apparent.  As I continued my walk I saw them—three furry little fox pups rolling over each other less than 10 yards away.  I stopped.  There they were, frolicking, unaware of—or at least unconcerned with—my presence.  One paused as he caught sight of me and, in a gesture that spoke of his innocence, walked toward me.  I remained still.  He stayed a few moments, then scampered to a nearby tree under whose roots offered the sanctuary of their dugout den. The second joined his sibling.  But the third remained watching me.  Finally bored and unconcerned, it yawned and settled in the grass for a nap. 

I had walked past all of this yesterday.  They undoubtedly had been here—it was the same hour, the same morning air, the same path….all was the same as today.  The difference was in me. Today I had allowed my attention to focus not on myself, but on my surroundings.  I had opened myself to receive what was going on around me. 

And a whole new world had revealed itself.

Hugs,

Marilynn            Visit me on my website!   www.releasedtotheangels.com

To Kill a Mockingbird  has great meaning for me.  When Pat began showing signs of loss, we turned to reading as a way of trying to recoup his waning ability to understand and recall words.  Every day we would sit together, reading out loud passages from the novel, then discussing their meaning.  I think to a certain extent it offered a type of refuge from the tangible fear that losses were growing.   For awhile it did seem that Patrick was able to handle this book discussion, but then slowly, inevitably, it became clear that the disease was gaining.  Patrick had Alzheimer’s.   

And now, years later, I am re-reading this literary gem.  Rather than being sad at the memories of that last reading, it is, in fact a comforting reminder of why I’ve always loved Harper Lee’s masterpiece.  It is a beloved story of childhood memories, of social awareness, and of innocence broken.  It is the story of Atticus, Scout, Jem…

…and Boo.

A touching scene in the book occurred when the young boy Jem discovers ‘treasures’ left in a hollow knothole of an oak tree.  As the story unfolds, Jem and his sister Scout become aware that these gifts were intended for them.  Left by a shy, reclusive neighbor named Boo, these innocent offerings represented things significant to an autistic mind wanting only to share what was precious to him.

I’ve always loved that.  The placing of precious memories in a guarded place.   I think in some respects our lives are measured by defined moments of joy, whether kept in photo albums or as simple recollections of the mind.  We are free to share them with others, to discuss their significance, or to simply keep them as secrets onto ourselves.

Years ago, in a backyard maple tree, I found a hollow left by a branch that had long since fallen.   On a whim, I, too, carefully placed secret moments of our life together.  I cannot remember if my actions were inspired by the novel, but like Boo, I simply placed them in this quiet place.  It didn’t matter that they might be discovered.  It was there for the taking if one were to come upon them. 

And as the years passed, from time to time I would think of these small items and I would smile. Past joys and memories were always with me, but new memories were forming and with them new experiences, both joyful and painful.  It was a natural blending of the past and present.

Today I placed one more treasure in the hollow of my tree….

Hugs,

Marilynn        Come visit me on my website!  www.releasedtotheangels.com

When you deal with Alzheimer’s disease on the national level, you can’t help but run into politics.  It’s going to happen.  But the truth is that this powerful disease has a way of bringing things down to a common denominator.   It knows no boundaries.  Republicans, Democrats, Conservatives, Liberals—none have been spared the effects of Alzheimer’s.  And unless something is done, unless there is a united, bi-partisan effort to eradicate this disease, nothing will stop its deadly progression.

At a time when party lines are drawn over budget spending, Newt Gingrich (whose mother suffered with Alzheimer’s) spoke of the absolute need to financially back research—not as an expenditure, but as an investment .  If new medicines or a cure is not found, Gingrich pointed out that Alzheimer’s disease will cost the government $20 trillion over the next four decades, completely bankrupting Medicare/Medicaid.  If we could just find a treatment that could delay onset of the disease by five years, it would cut government spending on Alzheimer’s by nearly half.  A clear, logical indication that investing now makes financial sense.

I see hopeful signs.  I am seeing how our representatives—on both sides of the political aisle—are joining forces to face this crisis.  This past year has seen NAPA passed.  This act (National Alzheimer’s Project Act) lays the foundation for future research. 

I, along with others, met with Senator Kirsten Gillibrand  (D-New York, replacing former Senator Hillary Clinton).  She spoke of fighting hard to pass the HOPE (Health Outcomes, Planning, and Education) for Alzheimer’s Act that would provide an early documented diagnosis and access to care planning.        

It is Senator Gillibrand, and others like her, who is leading a bi-partisan effort to firmly and decisively attack the disease now…a coming together in a determined effort to end Alzheimer’s.

There is hope in that.

Hugs,

Marilynn                        www.releasedtotheangels.com            Come visit me on my website!

Marilynn presented former House Speaker Newt Gringrich with a copy of "Released to the Angels"

 

Marilynn with Senator Gillibrand (D-New York, replacing Hillary Clinton)

There is no way to prevent it.  There is no way to slow its progression.  There is nothing out there to stop the onslaught of its horrible power.  There is no cure.

For anyone caught in the helplessness of this situation, it is simply overwhelming.  To watch a loved one slowly die is something you never forget.  It leaves you with an emptiness and a determination to make their lives count for something.

And so we gather.  The Alzheimer’s Association National Advocacy Forum held in Washington, DC is a gathering of organization workers, caregivers, and those living with the disease—all meeting with the specific purpose of demanding of our representatives the attention and dedication needed to affect new medicines and an eventual cure for Alzheimer’s.

But this is not a gathering of sadness.  This is a gathering of hope, of determination.  We have seen how research has brought an end to polio.  We have seen how even the horribleness of HIV can respond to new medications.  We have seen wonderful advances that have given new hope to so many other diseases.

And because we have seen, we cannot close our eyes to lives asking to be lived.  We simply must demand that this disease, too, be eliminated.

And so we gather.

And when we light candles, it is not simply a memorial.  It is a promise to never forget those who died or are dying with no hope of being cured.  We will never forget their pain.  We will continue to speak out for them…. because they cannot.  We will find the very words they struggle to say, and we will use those words loudly and clearly until they are heard by those who need to listen.  And when that happens—when we see the legislation that provides the needed research to find a cure for this disease—we will gather together to share in the joy of a completed promise.

Tonight I lit a candle….for Dad….for my Mother…..for Pat….for life.

Hugs,

Marilynn      www.releasedtotheangels.com       Come visit my website!

Little by little you do begin to realize that, as much as you want to be strong, as much as you want to endure the power of this disease, you cannot.  It is simply too big.

I found myself gradually weakening, feeling more of the draining effect that homecare presents.  Yes, I was able to meet Pat’s needs, but I was also neglecting mine.  I made sure he went to every doctor’s appointment and often missed my own.  I took care in assuring that Patrick receive the sleep he needed, but very seldom gave myself the rest my own body was demanding.  The result was exhaustion—both emotional and physical—that characterizes the plot of any health caregiver.

I learned to reach out.  I learned that friends were willing to help if I only let them.  I learned, too, that I needed to take time off so that I could claim what I so desperately needed.  I saw that, once rested, I could then return with renewed strength to the role of caregiver.

And now, after Patrick’s death, I have come to realize that respite is still necessary.  Because of my decision to use my book to reach out to caregivers struggling with Alzheimer’s, I have chosen to daily surround myself with the loss and the pain that characterize this disease.  Speaking at conferences, attending outreach programs, listening to caregivers, answering the many e-mails that come into my website www.releasedtotheangels.com —all this carries a sense of personal commitment.  But with the rewards of this commitment also comes the need to rest and find time off.

And so I have.  In these last months I have chosen to retreat somewhat from the weekly blogs and Facebook entries.  While I have continued to conduct interviews, speak publically, and maintain the correspondence that goes with the publication of a book, I have also focused more on myself.  Time to travel, time to be with friends, time to pursue personal interests.  My decision has not been in vain.

I feel renewed.  Refreshed.  

And so I resume what I had set aside, fully aware that future times may again reveal the need for quiet respite.

Marilynn at Barnes & Nobles booksigning

Hugs,

Marilynn  (come visit me on my website!  www.releasedtotheangels.com)

I was scooping up some twigs and leaves to put in the yard bag when I glanced down to the earth.  For a second I was startled at movement and then smiled in quiet recognition of beauty.  Not wanting it to flutter away, I momentarily froze, thinking, “oooh, a little butterfl….”

But it wasn’t.  I looked again.  There among the pine needles and twigs was the teeniest plant —its fragile leaves taking on the perfect form of a butterfly.  A breeze caught it, and in the flickering light of the pine trees overhead, this little ‘butterfly’ began to flutter. 

So simple.  So perfect.

I began to study it carefully and thought, “Wow, it’s really beautiful….“  As its leaves continued moving in response to the breeze I smiled, enjoying its beauty. I found myself thinking,  ”…..now if that right leaf were just a weeeee bit bigger, and if that left one weren’t frayed off, it would be a perfect butterfly.”

I started laughing.  Perfect.   That’s just the point.  It was not asking to be perfect.  It was not asking to be anything other than what it was–a simple leaf that had life despite imperfection.   I was the one who was imposing upon it a definition or interpretation of form.  It simply had life. In its own way it was perfect.

If Alzheimer’s taught me the cruelty of its power, it also taught me  the simplicity of life.  There came a time when Patrick could no longer fit into our world, the way things should be.  His life centered around a much simpler version. 

There were moments of anxiety and moments of peace.    He responded to a touch.  He smiled.  He lived with a contented simplicity that he, alone, defined.

It dawns on me that if we are the ones who impose a definition on how life should be lived, then his reality—so different from our own—will always fall short.  Through Alzheimer’s I came to understand that there is value in accepting another’s perception, without molding it into something I would prefer.  To observe it for what it is. To simply let it reveal itself.

A revelation of life in simple, imperfect moments.

Hugs,

Marilynn  (come visit me on my website!  www.releasedtotheangels.com)

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