Feeds:
Posts
Comments

Helpless…

When Patrick, my husband, was diagnosed with Alzheimer’s, I watched in numbness and pain as a mind slowly succumbed to this disease. I felt helpless. Totally, utterly helpless.

Even in the midst of pain, I realized that simply caring for him would not release him from this disease. All the Medicare, all the health insurance, all the supportive care provided would never erase the fact that Pat was still going to lose. I knew, even then, the futility of addressing the effects of Alzheimer’s, but never the disease itself.

Research is the only path out of this. By simply paying for care, we, in effect, guarantee the problem will not go away. We are going bankrupt paying for the damage without ever addressing the cause. We need to eliminate the disease itself.

The appalling reality? So far only one quarter of one percent (0.25%) of funding has been committed to Alzheimer’s research.

The Alzheimer’s Association recognizes this. For the first time we have a comprehensive bipartisan roadmap and strategy to find a cure. The National Alzheimer’s Plan (NAPA) places research in the forefront with a clear determination to eliminate the disease by 2025.

This obviously will take money. BIG money. But this week at the Alzheimer’s Association Advocacy Forum in Washington, DC a new idea was introduced. Let the scientists tell us how much money they need to do this. Bypass the political bureaucracy —and go directly to those working on the problem.

The genius of this concept is clear. By letting those in the laboratory working with experiments set the amount they need, you bypass the political tug of war that so often pulls conservative and liberal agreements apart.

We’re guaranteed of success before we even begin. It will be a success because we’ve seen it happen before with other diseases. Cancer, HIV/AIDS, and Cardiovascular diseases have all seen definite, measureable reductions in deaths—all resulting from new drugs/discoveries coming out of the science laboratories. We need that in Alzheimer’s, too.

We cannot close our eyes to this. It is an investment, not an expenditure. But no one contributor, one organization, can do it alone. We desperately need financial help to make this happen.

Helpless? No. We are not helpless. We just need help.

Hugs,
Marilynn

Visit my website! http://www.releasedtotheangels.com

DC 2014

Advertisements

Most people know that at this point in our society, Alzheimer’s cannot be prevented, cured, or even slowed. We know that. It stands alone as the death sentence handed down to anyone unfortunate enough to face its horrible diagnosis.

But do most people know that Alzheimer’s is the most expensive disease in America? It’s eating up Medicare. Nearly one in five Medicare dollars is spent on a person with Alzheimer’s. And that’s now. Wait until the baby boomers advance in age.

Instead of paying out one of every five dollars to medical costs of Alzheimer’s, in the next few years that number will increase to two, then three, and more. Medicare going broke? If a cure for Alzheimer’s isn’t found, the whole health system in America will collapse.

Do the math. If todays’ costs are $100 billion in cost of care for those with Alzheimer’s and estimates are that by 2050 that cost will be $1.2 trillion, it cannot possibly survive those kinds of financial demands.

Finding a cure for Alzheimer’s, despite the tremendous cost now, is the only way this thing will ever be stopped.

The simple truth is that our way of thinking has to change from thinking of this as a horrible expenditure to an inescapable, absolute investment in our country’s financial stability.

With it, we can look forward to a world free of the pain and suffering of Alzheimer’s. Without it, we can only look backward to what we didn’t do when we had the chance.

OLYMPUS DIGITAL CAMERA

This week in Washington, DC I was able to see first-hand, efforts being made to set aside political differences and come together as one to fight this disease that affects us all.

Thank you, Rep. Chris Gibson (R-NY) and Rep. Sean Patrick Maloney (D-NY) for your bi-partisan support in understanding the importance of Alzheimer’s research and your commitment to help bring this about.

Hugs,
Marilynn
Visit me on my website! http://www.releasedtotheangels.com

It always strikes me how Alzheimer’s simply goes where it wants, claiming its victims with no regard to social status, position, or profession. Perhaps it’s our culture that lures us into thinking that since we hold up our celebrities as being special that they, by nature, will be immune from what we consider undeserved, unfair.

And every time we’re proven wrong. Glen Campbell—an icon of country music and song—has been diagnosed with the disease that is slowing robbing him of an innate talent and ability to reach thousands through his stage performances and recorded music. It is not only the thought that his live music will eventually fade. It is an awareness that he, like so many Americans, is not spared the cruelty and hardship that Alzheimer’s brings.

All of us carry with us memories. Mine include the countless times his lyrics came to me… Like a rhinestone cowboy, riding out on a horse in a star-spangled rodeo. The image of a man in the prime of life, healthy, sharing so many songs.

This week in Washington, DC, people from all over the United States gathered to make their voices heard in the fight against Alzheimer’s. The annual Alzheimer’s Association Advocacy Forum brought numbers that included family members, friends, professionals, young, and old—all coming to pay tribute to those affected by Alzheimer’s and to seek real policy change.

And among them, Glen, his wife, and his daughter, Ashley Campbell, who came to speak on behalf of her father with testimony at the Senate Special Committee hearing. Her words spoke of her pain and of her father’s courage:

“Alzheimer’s is a disease that robs people of their lives while they are still living and it robs families of the people they love while they’re still standing right in front of their eyes… Dad thought it was important for people to know you can keep doing what you love — that life doesn’t end right away when you get Alzheimer’s. It was also so important for my dad to take action and help spread the word about the need to find a cure for Alzheimer’s.”

And there’s the key. That despite the fact that Alzheimer’s will continue to rob and destroy, there are those, like Glen Campbell, who bravely choose to put their pain in the spotlight in order to draw awareness for the need on our part to take more action against this disease.

And if, in choosing to speak out, his message resonates with those capable of joining the fight, then that spotlight will have shown past his pain to highlight a firm determination that others not experience what he is now facing.

On the road to my horizon
…I’m gonna be where the lights are shinin’ on me

Shine on, Glen. And thousands will claim your fight as their own.

Hugs,
Marilynn

Visit me on my website! http://www.releasedtotheangels.com

Glen Campbell and family

Glen Campbell and family

Glen Campbell and daughter Ashley testifying at Senate Special Committee Hearing

Glen Campbell and daughter Ashley testifying at Senate Special Committee Hearing

Glen Campbell, Alzheimer's Association Advocacy Forum, Washington DC

Glen Campbell, Alzheimer’s Association Advocacy Forum, Washington DC

A Life Completed…

In my life I have been blessed with friends who, despite my own imperfections, have welcomed and accepted me into their lives. I will never take for granted the gift of friendship.

And yet, the special gift formed by the bond with parents is one that begins at birth and continues through the years, changing and maturing as we grow into adulthood.  It is sometimes only after they are gone that we fully realize and appreciate the impact they had on our lives.

I have just returned from the funeral of my mother.  It was a beautiful, quiet ceremony that included the simplicity of a song played on the guitar and sung by my nephew.   It touched my heart.

As he sang, my thoughts drifted through her life.  She grew up a child of the Depression, in a family that did not freely express emotion, but which instilled in her the strength of character that would help her in later years as she cared for my father with Alzheimer’s.   She never complained, fully accepting what was given to her, dedicating herself to his care until his death in 2000.

And when her own body and mind weakened, she once again showed me her inner strength and dignity.  Anyone who has cared for someone with Alzheimer’s, knows full well what awaits them as they, themselves, face the onset of dementia.  She knew she was losing her memory, had great fear of it, yet never gave in to self-pity.  She became grateful for the little moments…..for the moments when she could reach out to those who loved her.

I live in New York, she lived in Seattle.  Yet with the power of modern technology I was able to be with her almost every day on the Internet.  In these last years I could share, with the help of my sister, all the moments that made up her life—her smiles, her fears, her needs, her love.  And when she no longer knew who I was, it didn’t matter.  I knew who she was.  And the gift of her life was revealed even more fully to me.

Two hours before she died, I was able to say good-bye to her.  And in my heart I locked away the memory of this incredible woman who gave me life, and who taught me how to live in the simplicity and fullness of each day.

It is with a grateful heart that I celebrate this Thanksgiving.

My mother, Frances…

Hugs,

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

With Little Steps…

The Walk to End Alzheimer’s —a gathering of those who know what it is like to be affected by Alzheimer’s.  Each year thousands of people across the United States take on this symbolic journey and quest to find a cure for a disease that affects over 5.4 million Americans.

Today I held a microphone.

I looked out over the crowd of hundreds of people who came together to walk at the Alzheimer’s Association Hudson Valley/Rockland/Westchester, New York chapter Walk to End Alzheimer’s.  Some wore personal tee shirts with pictures of family members who have died with this disease.  Others wore purple, symbolic of the cause.  Still others came-as-they-were, dressed for a typical Saturday morning in September, carrying in their hearts the images and memories of loved ones.

And as I spoke, it dawned on me.  Need is expressed in so many different ways.  I could see on some faces the need to find personal strength as they face the beginning stages of this disease. I could see others, touched by the pain of loss, in need of healing.  I could sense, too, the need and determination of so many as they struggle to care for loved ones, not knowing where this disease will lead them, wanting only to cling to the memory of what was.

I take comfort in the fact that this Walk, like so many across the nation, was organized to address these needs.  With this chapter’s goal of raising $650,000 comes the very real step toward securing more research and programs designed to help caregivers and those suffering with Alzheimer’s.

While facts and figures can often appear cold and impersonal, for me this goal commitment speaks volumes.  It reflects the outpouring of contributions from common people—many who have lost loved ones—determined to give others the hope denied to them.  It reflects, too, the determination that programs will continue to help those still struggling with family care.  But above all, it reflects the promise that research may one day yield new medicines and an eventual cure.

Today hundreds of steps were taken.

Today the journey seems just a wee bit shorter.

Hugs,

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

Marilynn speaking at Walk to End Alzheimer’s
Poughkeepsie, New York

Speaking with Senator Steve Saland (R-NY)

A while back, I wrote of my joy at the discovery of a robin’s nest in my little gazebo.  Such a simple gift that brought with it the promise of spring, of nature renewing itself….of life.

In these last few weeks I have been very careful to not enter into the gazebo, afraid to disturb the parents as they nested.  Working in the flowerbeds nearby, every once in a while I would smile as I saw a robin enter into the gazebo, alighting on the swinging flower basket where they had built the tiny nest.  And each time I stayed perfectly still as the parent settled in among the leaves to cover and warm the four perfect sky-blue eggs.  I smiled at the anticipation of babies, their loud chirping, the adult birds working tirelessly to feed them.

But in the last few days I haven’t seen the robins.  At first I gave little notice, unaware as I am of their schedule and preoccupied with my own.  Then, throughout the day yesterday I slowly became aware that there was no coming and going of adult birds, no sounds of hatchlings, no activity.  And so, last evening I quietly tiptoed into the gazebo and peered into the nest.

It was empty.

My heart sank.  Evidently, either a crow or squirrel had gotten to the eggs.  I stood there in silence staring at the empty nest, absorbed in the painful sadness that this should not have happened.  It seemed to trigger in me an overwhelming feeling of loss.

Like so many times while caring for Patrick with Alzheimer’s, I was faced with the reality that we have so little control over what happens in our lives.  There are no guarantees.  What we plan for often does not happen.  What we count on sometimes is replaced with a different reality that challenges the very core of our faith and belief.

And yet I will not stop believing.  All through Alzheimer’s, I asked for the strength to accept what I had no control over, and to discover moments that would sustain and edify me.  I always found them.

I was privileged to once have had a long conversation with Mary Anne Radmacher, author and writer of a saying that I have kept framed in a place where I can see it every day.   It carried me through some pretty dark moments of this disease.  This morning I placed the tiny empty nest next to that framed saying, and in it I gently placed a precious turquoise egg purchased one summer when Pat and I were vacationing on Cape Cod.

                                         Courage does not always roar.

                      Sometimes it’s a quiet voice at the end of the day saying

                                           “I will try again tomorrow.” 

And this afternoon as I entered my backyard, I noticed…

High up in the trees, the robins are building another nest.

Hugs,

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

Since the publication of Released to the Angels, I have spoken to many caregivers who are now confronting the same issues that I and Patrick faced on our journey through Alzheimer’s.  My public message reflects what our written story expresses…that strength can come from little moments of joy often hidden in the pain and loss of this disease.

I speak to audiences, often using a microphone to reach people in the back of the room.  When addressing community gatherings and conference crowds,  it is sometimes so easy to look out over an audience and see numbers rather than individuals.     It is only when I speak to people who approach me, during book signings, or following presentations that it all comes into focus.

My message is not to an audience.

Within that audience is a single individual who is listening, who is facing the pain of Alzheimer’s, who is struggling to find strength.  And when I meet this person, during a book signing or simply being stopped at a conference,  I realize that this one person wants to communicate, needs for me to hear their story as well.

It is Al who shows me a picture of his beloved Gloria as a young woman….who looks back and has no idea how she worked a job, managed a house, cared for him and their family in years past.  He fights back tears as he tells me how he wants to care for her as she descends deeper into Alzheimer’s.

It is Mary who is watching her mother become a stranger to her.  It is Beverly, who smiles when she says that her husband, like Patrick, had an incredible sense of humor.  It is a son.  It is a brother.  It is a hundred different people.

It is the voice and heart within Alzheimer’s.

Hugs,

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