WITH EVERY BEAT OF MY HEART

I enjoyed my time away very much. It was a needed relief for my heart and my brain.

I called Peggy and talked with her while on my trip.

She seemed more scattered than usual. She has a new sitter and I think that it is a major adjustment for her.

I read something yesterday and wanted to share it. It is a quote from the movie "The Breakfast Club".

"When you grow up...Your heart dies".

That quote is looking forward from the eyes of youth. The quote changes with wisdom and age and then reads...

When you grown up, your heart grows bigger and is filled with the joy and pain of living.  Your heart learns to accept and not judge. Your heart holds all the joy and tears of your life. Your heart learns that difference in people makes them special. Your heart is filled with the experiences of a lifetime and beats to it's memories but......

When you have grown up and develop Alzheimer's disease........

Your heart dies a little every day because your heart has forgotten.... why it beats.  Peggy's heart sends no messages to her brain and her brain is no longer connected to her heart. Her heart only beats to keep her alive and being alive and living are very different functions.

When you grow up and develop Alzheimer's disease, your heart is just an organ in your body. It is just an organ that beats to keep you alive. Peggy's heart beats and she is alive but her brain and heart are no longer connected. Her brain and heart do not work in rhythm. 

 Peggy's heart no longer beats with the feelings and messages stored there.  The beats of her memories have been erased and her heart now only beats to keep her body alive.

Her brain with it's memories and her heart with the steady rhythm have been disconnected. She is living but she is no longer alive.

Peggy's heart and brain are just vital organs. They are the vital organs that keep her alive. They are the vital organs that keep her breathing but..... breathing and living are two different things.

Living without remembering is like.......

Growing up and having your heart......Die.

Peggy and I were connected and I miss her warmth, her humor and her counsel.

Joan Frank said; By now we know and anticipate one another so easily, so deeply, we unthinkingly finish one another's sentences and often speak in code. No one else knows what I mean so exquisitely, painfully well; No one else knows so exactly what to say to fix me.

No one.... but my sister.

We are sisters. We will always be sisters. Our differences may never go away, but neither will our song.....      Elizabeth Fishel

I Love you Today, Peggy and I miss you with every beat of my heart. A heart that remembers.

A heart that remembers you and is filled with your lopsided smiles, exasperated looks, I can't believe you just said that.. looks, be happy looks, help me looks, wide eyed looks, scared looks, breathless excitement looks and yes, angry looks.......

So many memories of Peggy are stored in my heart and I remember her as my heart continues to beat to the rhythm of my memories.

My heart and brain are connected with many memories of my sister, my forever friend.

I will remember Peggy until I grow up and my heart dies.

I Love You Today, Peggy!

Mary Louise

NEXT WEEK

I will be leaving on a trip tomorrow and will not be back until next week.

I will continue to call Peggy while I am away.

 I will write when I return!

What the heart gives away is never lost....it is kept in the hearts of others.           author unknown

I Love You Today, Peggy!

Mary Louise

THE SONG IN PEGGY'S HEART

Peggy has a beautiful singing voice.

When we were growing up, we would sing together while clearing the table and washing the dishes in the evening.

Those are happy memories of growing up at 1805 St. Charles Court.

This morning, I asked Peggy if she still liked to sing?

She said, yes.

I asked her if she would sing a song for me and she hesitated. I told her that I would sing with her and she said OK.

What do you want to sing, Peggy?

Silence filled my ears.

Do you have a song in your heart to sing to me today?

Yes.

Please, sing it for me.

OK.

There was a long silence and I kept still. I wanted to jump in and help her but I just listened with my heart and prayed that she would think of a song on her own.

All of a sudden, she burst into song.

The song in her heart this morning was Amazing Grace.

She sang it beautifully and as I listened to her sing those powerful words, tears ran down my face.

" Amazing grace, how sweet the sound that saved a wretch like me. I once was lost but now I'm found. Was blind but now, I see. Twas grace that taught my heart to fear and grace my fear relieved. How precious did that grace appear, the hour I first believed".

Once, she knew all the verses and all the words.

This morning, she was forgetting the words to the song of her heart as she sang. I could feel her struggle to remember words and would start the song over and over again.

I sang it with her when the words wouldn't come and we finished the first and second verse together.

I asked her if she would like to sing the last verse together and she said no.

I asked her why and the response was...

I don't know any more words.

Would you like for me to sing the words of the last verse to you  Peggy?

Yes.

And so, I sang the last verse of Amazing grace to her this morning. Tears choked my throat as I sang these words to my sister.

"When we've been there ten thousand years...Bright shining as the sun. We've no less day's to sing God's praise than when we first begun".

I couldn't say a word when I finished the verse and then I heard Peggy say.

Thank you.

It was not a thank you to a sister but a thank you to a stranger.

A thank you to a stranger who sang the song of her heart this morning.

Peggy still amazes me with the grace that she possesses as she continues to disappear from Alzheimer's disease.

I pray for half of that grace as I continue...... 

To watch her disappear.

I Love You Today, Peggy!

Mary Louise

AVALANCHE

I talked with Peggy this morning and her voice was flat and cold.

I could not connect with her on any level. She is getting worse every day and there is no way to reach her.

I was reading in the paper this morning about the avalanche in Utah and thought that my call to her was a lot like an avalanche.

Her mind has been covered in a great slide of freezing cold snow and she has no way of digging herself out.

Doctors, medications and care have not helped to locate the Peggy that is buried under the mountain of snow inside of her mind.

Her mind is stilled by the weight of Alzheimer's snow. Alzheimer's disease slid into her mind and crushed all of her thoughts and her memories.

The weight and freezing temperature of the snow has frozen Peggy in time and she will stay frozen until she is rescued and thawed out in death.

On this very cold day in Ohio, I made the call to my sister and thought of the warm, happy Peggy that I knew and remembered.

After my call to her, I was faced with the frozen person that she has become because of Alzheimer's disease.

I Love You Today, Peggy!

Mary Louise

Peggy sat down at her desk and was writing in the journal of her life when she was in her late 40's. As she wrote, Alzheimer's disease crept up behind her and looked over her shoulder to see what she was writing.

Peggy continued to write and live her life. Little did she know that Alzheimer's was monitoring every word that she put down in her journal.

One day, when she was 50 years old, Peggy put her pen down to think about what she wanted to write next. That is when Alzheimer's disease picked up her pen and began to write it's own words in her life journal.

At first, her words were clear but there were times in the writing of her life journal that she forgot to write about certain things.       Then, there were the times that she couldn't find her journal to write. At last, there were the day's when she couldn't remember where she had put her pen or her journal.

Those were the days when she made no entries in her life journal.

Slowly, Alzheimer's disease clutched the pen and started writing it's own words instead of Peggy's words on the pages of her life journal. The words on the pages of her journal became scribbled lines that no one could read, not even Peggy.

Alzheimer's disease became the author of Peggy's life journal.

It took away her ability to write the lines of her past, present and future in the journal of her life.

Today, Alzheimer's disease writes the lines that are her days.         No one can read the scribbled lines of her life now, not even those who love her so much.

The only way to read the words that Alzheimer's writes for her today is to read between the lines.

I can still read the words of her heart because I knew her long before Alzheimer's became the author of her life and took the pen from her hand.

I knew her before Alzheimer's began to scribble the words of her days.

I knew who she was and so I know who she is today.

Alzheimer's disease is winning the writing contest with Peggy but I know the greatest author and I know what Peggy would be writing in her journal if she could.                                                          She would be writing the love in her heart. She would be writing laughter and fun. She would be writing encouragement and prayers.She would be writing funny stories and jokes. If it Alzheimer's had not entered her life...She would be writing  heart words in her daily journal.

Her pen has been taken away and Alzheimer's has control over what is written in the journal of her life but.....

I remember Peggy before Alzheimer's took her pen away and so...

I will write some of her words for her. 

I can do that because I remember Peggy before Alzheimer's took the pen and began to write in her journal.   

I remember Peggy and I remember her life and her passion for living.

My mission, is to write her life and let people know what a special person my sister was and what a committed life she lived.

Alzheimer's has won the writing contest in Peggy's life today but...

As long as I hold my pen and can write in my journal of life...

I will continue to write about Peggy in this journal and what this vicious disease has done her. I will write funny things about her and I will also write the pain of...

Watching My Sister....Disappear.

I Love You Today, Peggy!

Mary Louise

SLEEPING EYES

My 3 1/2 year old grandson climbed into bed with his Mom one morning. His Mom pretended to be asleep and so he shook her to get her to wake up. When that didn't work, he pulled her eyelids open with his hands and said:

Are you in there, Mommy???

There have been many times while watching Peggy disappear that I would like to do the same thing.

I would like to shake her to make her wake up and if that didn't work....

I would pull her Winter eyes of Alzheimer's open and shout.....

Are You In There, Peggy???? 

    

I Miss You!

I Love You Today, Peggy!

Mary Louise

THE TYPING TEST

I broke one of my rules today while talking with Peggy. I asked her if she knew who she was talking with and her answer was...No.

I didn't let it drop there, I said; this is your sister, Mary Louise.

 Oh, she replied.

Do you remember Mary Louise?

No.

Well, I remember you, Peggy.

You do? Why?

Because you are my sister and I love you.

OK.

I was reminded of my first interview for a job after graduating from school.

I walked into the office building downtown and asked for the interviewer. He walked out and invited me into his office. I wanted to make a good impression and had decided to call him by name but when the time came for me to use his name...I had forgotten it in my nervousness.

The interview went on and then came the time for a typing test. I sat down at the typewriter and watched as he took out a stop watch.

I felt so much pressure to do well on the test while still trying to remember his name.

He said, begin and I started typing.

I typed two paragraphs in record time and was feeling pretty good about my work. He took the paper out of the typewriter and a huge smile came to his face. Wow, I thought. I must have really done well.

Mr. "I still don't remember your name" showed me my typing test.  I had gotten my fingers on the wrong keys and typed two paragraphs of letters and numbers. There was not a coherent sentence in either paragraph.

Needless to say, I didn't get the job and I never forgot the feeling that I experienced that day.

It was a lost feeling of being in a building that I had never been in and not knowing my way around.

It was a feeling of not being able to remember a name.

It was a feeling of being judged.

It was a feeling of not being to produce.

It was a feeling of failure.

It was a feeling of embarrassment.

I wonder if this is what I do to Peggy when I ask her to remember who I am?

Her everyday life is like the typing test that I took those many years ago.

Peggy's days are jumbles of letters on a page and no one can read the words she has written.

When I took my famous typing test, I knew exactly what I was typing. I was looking at all the words and typed the words exactly as I saw them. I just had my fingers onthe wrong keys.

I started typing the words as I saw them but nothing came out on the paper that I had seen on the page but no one else could read what I had written.

Maybe, this is what happens to Peggy when she tries to answer my questions.

She knows what she is trying to say when she talks but I just can't read or hear the words as she writes them or as she sees them.

 I do think that Peggy knows exactly what she means when she tries to communicate.

I am the one who cannot understand.

I Love You Today, Peggy!

Mary Louise

REMEMBER ME THIS WAY

                        "REMEMBER ME THIS WAY" Jordan Hill

Every now and then..We find a special friend that never lets us down.

Who understands it All.

 Reaches out each time we call.

Your the Best Friend that I've found.

I know You Can't Stay.........But part of you will.. Never..Ever Go Away!

Your heart will Always stay!

I'll say a prayer for you and hope it will come true..That life will just be kind to such a gentle mind ......

And If you lose your way.....

Think back on yesterday.....

Remember Me This Way...Remember Me This Way!

I hung up the phone after my call to Peggy this morning and cried. It was nothing she did or didn't say......

It was just remembering and missing My Sister, My Friend. 

I Love You Today, Peggy!

Mary Louise

GOODBYE DOESN'T MEAN FOREVER

This slow goodbye to Peggy every day has taught me that with every goodbye.....I learn.

I have learned that goodbye doesn't mean forever, it just means for now.

I know that even though she doesn't remember me...I remember her and that is what is important.

I have learned to listen to her voice with my heart and not just with my ears.

I now hear the tender sounds in her jumbled sentences. I do not try to correct her speech or her thoughts. I just listen to her voice.

I understand that I do not need to fill up the silent spaces with chatter when we are talking.

I have learned that it is nice to hear her breathing on the other end of my phone line. I know, by hearing her breathe that she is hearing my voice even though she cannot respond.

I know that Alzheimer's disease is to blame for Peggy's lost memories and it was not her choice to forget about me or her life.

I am learning to deal with the fear of getting the disease myself.

I understand that I need not correct her jumbled sentences but listen to how hard she is trying to speak and sound normal.

I have learned that just hearing her voice is a privilege.

It is a empty feeling to know that someone you have known and loved all of your life has forgotten who you are but I have my memories of Peggy and that helps me through this journey.

Watching my sister disappear is a challenge to live with and to understand but understanding why she developed this disease would not ease the pain that I feel.   

I know that we will never go back to the way we were but I feel privileged because..............

I remember Peggy and I continue to learn from her as she continues to forget and to disappear from my life but .....

She will never disappear from my heart!

I Love You Today, Peggy!

Mary Louise

 

 

 

 

 

 

 

 

 

 

 

A LONELY PLACE CALLED...ALZHEIMER'S DISEASE

I learned today that Peggy has been having bouts with violent behavior.

That is so unlike the Peggy that I knew. She was a gentle person who would never do anything to hurt anyone.

I wonder what is going through her mind when these violent episodes happen. Why is she fighting the people who love and take care of her? Is she afraid that someone will hurt her?

I asked her this morning if everything was alright and she said yes.   I asked her if she had been upset about anything and she seemed surprised by the question. I told her that I would always be here for her. Her response was...I Know.

There was a sound in her voice that hasn't been there and I have no way of knowing what to do to help her and that is a lonely place to be this morning.

When I used to sew, I would buy a pattern and follow the instructions. When dealing with a Alzheimer's patient...there is no pattern to follow. You just hope that you are doing the right thing.

I feel helpless this morning knowing that Peggy is struggling and having violent episodes.

I hate what this disease is doing to my sister. Her voice is still the same but the Peggy that I knew is almost gone.

I am so angry that this disease has erased the Peggy that I knew.

I am angrier that I can do nothing to stop it!

This disease is like watching a tornado come and knowing that there will be total destruction and all you can do is watch as it approaches.

It is like trying to find a place to hide from danger and there is no  place to hide. There is no safe place and so you just stand there and hope for the best.

This disease is like going to sleep and having a nightmare. You wake up and realize that it is not a bad dream at all but something that is really happening.

Watching someone you love die from Alzheimer's disease is like feeling afraid and scared and there is no one to comfort you. No one to tell you that everything will be alright because it will not.

It is like suffering from intense pain and there is no medication that can ease the pain or make it go away.

It is like crying all the tears of your life and never being able to stop.

The saving grace in my struggle of watching Peggy disappear is prayer. That is all I can do for her and for me.

After talking with her this morning, I prayed that her mind will find peace and that she will not be afraid as she continues to disappear from my life.

I miss you so much and I Love You Today, Peggy!

Mary Louise

 

 

A GENTLE SOUND FOR THE NEW YEAR

I heard a gentle sound while talking with Peggy today.

It was gentle sound to start off my New Year.

I called Peggy and when she answered the phone, I knew that she did not know who I was but I do think that she still recognizes my voice on some level.

Hey Peggy, This is Mary Louise. How are you today?

Good.

That's wonderful. What are you going to do today?

silence.

I could feel her struggle to answer my question and so I said, whatever you do, I know you will have fun.

Then, she laughed........

A laugh that was gentle and made me smile........

It made the call to my stranger~~~~ worth the while.

Happy New Year, Peggy!

I Love You Today!

Mary Louise

THE REAR VIEW MIRROR

I love starting a New Year.

It reminds me of preparing for a cross country trip in a car.             I will need to pack a lot of things for the trip to 2006. A map, flash light and first aid kit will be in my car. I will pack my suitcases for the trip but will try not to take too much baggage from 2004 with me.

This trip will be different because Peggy will not be an active part of my life this year. This will be the year that I start my trip into 2005 without the support of my baby sister.

It is a year when I will get into my New Year car and start a trip down a long, unfamiliar road to arrive safely at 2006.

I will keep my eyes on the road ahead and do my best to arrive at 2006 in good health and happiness.

I will drive the 2005 car of my life and take in all the sights as I travel. I know that there will be times when I will get lost while driving and will need to look at a map to know which way to go.

I will stop my car along the road of 2005 and sit and think and drink in the scenery and remember the past years. I will stop my car in 2005 and get out to take a walk to stretch my legs before continuing on the trip to 2006.

I will do my best to be a safe driver by watching the road ahead but....I will also look in my rear view mirror and see Peggy. 

Peggy will continue to be a passenger in the car of my life. She will be in my rear view mirror as I drive down the road that lies in front of me.

She continues to teach me while I drive and I know that she will always be a passenger in the car of my life.

I will continue to look ahead as I travel to see how far I have to go....

While glancing in my rear view mirror to see how far I have come and to see...........Peggy.

I Love You Today, Peggy!

Mary Louise

 

HAPPY NEW YEAR

LOOKING FORWARD INTO AN EMPTY NEW YEAR STRIKES ONE WITH A CERTAIN AWE, BECAUSE ONE FINDS THEREIN NO RECOGNITION......

THE YEARS BEHIND HAVE A FRIENDLY ASPECT AND THEY ARE WARMED BY THE FIRES WE HAVE KINDLED....

ALL OF THEIR ECHOES ARE ECHOES OF OUR OWN VOICES.......Alexander Smith

 

HERE'S TO THE NEW YEAR AND TO MAKING THE ECHOES THAT I WILL RECALL NEXT NEW YEARS DAY!

SOME OF THE ECHOES THAT I WILL RECALL NEXT YEAR, WILL BE THE SOUND OF PEGGY'S VOICE ON THE OTHER END OF MY TELEPHONE LINE.

I LOVE YOU TODAY, PEGGY!

MARY LOUISE