Sunday, December 24, 2006

MERRY CHRISTMAS 2006

Merry Christmas Eve Peggy.

I miss you today.

I miss your laughter, your excitement, your smile.

I miss knowing you remember what Christmas means.

I miss sharing with you.

I miss so many things that made you...You.

I miss you this Christmas of 2006 but I am thankful for all the Christmas' that we shared as sisters.

This is just another day for you but for me...

It is the Christmas memories of our lifetime as sisters.

Merry Christmas, Peggy!

I Love You Today!

Mary Louise

 

Wednesday, December 20, 2006

FINDING MY CHRISTMAS SPIRIT

I was shopping for Christmas gifts the other day at our local mall.

I watched the people's faces as they hurried past me as I walked past the many stores that were decorated for Christmas.

I was feeling blue and needed to see a smile directed toward me. I needed a smile to help me through the sad feelings.

I did not see a single smile because everyone, including me, was absorbed in our own lives, our own  rush to buy gifts and our own sadness of the season.

I made my way to the food court, found a table and sat to watch people as they hurried past my table.

There was no laughter that I could hear. The mall music was softly playing Christmas carols in the background.

Everything was decorated and ready for Christmas except...

The people in the mall and......

Me.

I was searching for my Christmas spirit and my shopping trip to the mall made it very clear to me the the spirit that I was searching for that day was not to be found in...

The mall, the music that was playing or the decorations of the season.

The spirit that I am searching for this year cannot be bought, wrapped and given to me.

My Christmas spirit must be earned and given away to come back to me. I can't change what is going on, on the outside...but I can find what I am looking for on the inside.

My spirit this season can only be found inside of me.

I went back to the mall to try an experiment.

I didn't look at the faces of the people who passed me hoping that they would give me the smile that I needed from them.

Instead, I gave my smile to their faces.

I bought a gift in a store and as I turned to leave the store, I said Happy Holidays to the sales person and she smiled back at me.

I helped a lady pick up her coat from the floor and she smiled and thanked me. I said, Happy Holidays and she said, thank you and smiled back at me.

What I learned in a few hours in the mall was.....

You cannot wait for other people to give you the spirit of the season.

You have to give of yourself and when you do, the smiles will come from the faces of strangers and warm your heart. Giving of yourself brings the spirit of the season back home where it belongs.

If you are searching for the spirit of the season this year...You will find it when you give your spirit away.

It's amazing how the smiles come back home when you open the door of your heart and welcome others inside.

 Peggy, I miss you this Christmas season.

I miss your smile this year but I did see your smile in so many faces at the mall when I took the time to give my smile away.

I learned that I could not find the joy of this season until I was willing to give my Christmas Spirit away and expect nothing in return

Mary Louise       A work in progress

Always remember to forget the things that made you sad.

But never forget to remember the things that made you glad.

( Elbert Hubbard )

Wednesday, December 13, 2006

GOING BACK TO "THE MEMORY PLACE" STORE.

I have been shopping for Christmas and searching for the perfect gifts for those I love.

 I walked through the stores at the mall and looked at all the wonderful gifts that I could buy. I took my time because these will be special gifts that will be opened on Christmas morning. 

While shopping, I thought about a store that I wish existed in our mall.

It would be called "The Memory Place Store".

I could go in this shop and buy my gifts to give to Peggy for Christmas.

I could stroll down the isles of the Memory Place Store and buy all of her memories back, wrap them in pretty christmas paper and give them to her this Christmas morning.

On Christmas morning, under her Christmas tree, there would be colorful boxes, decorated with bows and glitter and signed, Love, Mary Louise.

She could open the boxes one at a time and each would contain a group of  her forgotten memories. 

One box would have all the stories of her childhood.

Just by opening the box, her childhood memories would flood back into her brain as she sipped the coffee that she loved.

Next, she could open the gift box containing all of the memories of her teen years.

She would carefully take them from the box and drape them around her neck and in a flash, all of those memories would be hers again on this special Christmas day.

 Then, she would open the next three boxes.

Those boxes would have the memories of her 20's, 30's and 40's wrapped in white tissue paper.

She would open the boxes one at a time and have all of those memories drift back into her mind while sitting in the light of her shining, twinkling Christmas tree.

The next gift box would contain the memories of her husband, her marriage and of her children.

What joy would shine from her face as she looked at them lying in the box and she could remember all of the times they spent together.

She would throw the contents of the box into the air and let the memories rain down on her and bask in the glow of their love and remember each of them once again.

The last gift box would hold the memories of our parents, her sisters and her brother.

She would smile and hold the box to her heart and remember the love that we all share. She could take each memory out and hold it in her hands. She could throw the memories around like balls, bouncing them from the floor to the ceilings while laughing.

Her eyes would be shining and brimming with tears because she could remember her life and the love that was shared at Christmas time and the rest of the year.

On this special Christmas morning...The morning of miracles, Peggy could have a miracle for one day.

For this one special Christmas Day, Peggy would get 7 beautiful boxes. Each box containing the gift of the remembering her life.

 

She would open all of "The Memory Place Store" gifts that were carefully wrapped in beautiful paper and colorful bows.

She could unwrap her past and present and remember.

She would have one day to remember what it is like to love and be loved. 

Peggy would know on Christmas day morning that even though her life is disappearing...

My love for her will never disappear! We gave one another the gift of our love for many Christmases.

Just because she cannot remember.... doesn't mean that I will forget!

Life may end, times spent together may end but ....

Love remembered at Christmas and through the year will never end!!

Merry Christmas, Peggy!

I Love You Today!

Mary Louise


Saturday, December 2, 2006

MOTHERS AND DAUGHTERS

Margaret Mead said:

Often... sisters become each other's chosen and most happy companions.

In addition to their shared memories of childhood and of their relationship to each others children, they share the memories of the same home, the same homemaking style, and the same small prejudices about housekeeping the carry the echoes of their mother's voice.

Dear Peggy,

I am sad that you have forgotten that I was your treasured companion.

I am sad that you have forgotten the shared memories of our childhood.

I am sad that you have forgotten your children and mine.

I am sad that you have forgotten the memories of our home at 1805 St. Charles Court.

I am sad that you have forgotten how mother decorated for Christmas and her famous Thanksgiving dinner.

I am sad that you have forgotten mother's voice saying...don't open an umbrella in the house, go out the same door that you came in, don't be a boys proving ground, always remember your Colley pride, blood is thicker than water, always call and come home and many other sayings.

I am sad that you have forgotten mothers voice and mine as well.

But Peggy....

I am glad that you had those things for a precious, few years.

You might have forgotten in your mind but I know that those memories will remain in your soul for....

They will always remain in mine!

I Love You Today, Peggy!

Merry Christmas 2006.

Mary Louise

Wednesday, November 29, 2006

I LOST ME

There was an article about Alzheimer's disease in our Monday paper.

The title was...'I have lost myself'

When I first started writing this journal about Peggy, she made this statement to me, I lost me!

NOVEMBER 4th 2003

Peggy said something today that gave me chills and made me cry. I asked her how she was doing and she answered in a loud, scared voice.

She said... M. L......I lost Me!

I asked her how she was and if she was going anywhere today ( her sitter takes her out every afternoon).

She said, I don't know...I don't know and sounded so scared.

I assured her that it was O K and not to worry.

She said, all the babies were there and so was Barbara ( sister who lives in Atlanta ).

Barbara is not there and I knew it.

I  told her that I loved her today and she said, I know and I love you too.

Then, she said, I can't go anywhere.

 I said why Not, Peggy?

She replied...I can't go anywhere because I HAVE LOST ME!!!!!

The Long Goodbye to my Sister, my Friend continues every day!

ML

That entry was made in 2003 after Peggy had been losing her "self" for quite sometime. She was still able to communicate and let me know how she was doing.

Now, she is really lost.

Peggy is lost forever and as hard as I try........

I cannot find her!

The reason that I cannot find my sister was discovered by Alois Alzheimer 100 years ago this November.

Article by David Shenk. The author of The Forgetting: Alzheimer's, Portrait of an Epidemic 

( abridged by Mary Louise Ross Harris)

Alois Alzheimer was a 42 year old German psychiatrist and neuropathologist.

He shocked his colleagues with his description of one woman's autopsied brain.

The woman was named Aguste Deter. Five years earlier, her husband had admitted her to Alzheimer's psychiatric hospital in Frankfort, Germany with  disturbing set of symptoms: memory trouble, aphasia ( loss of the ability to use words), confusion, bursts of anger and paranoia.

When she died in April of 1906 at the age of 55, Alzheimer was able to look inside her brain.

Ernest Leitz and Carl Zeiss had just invented the first distortion free microscopes.

Franz Nissl had revolutionized tissue-staining, making various cell constituents stand out, opening up what was characterized as "a new era" of the study ofbrain cells and tissues using various colored stains.

Alzheimer studied the frozen tissues of Aguste Deter's brain at a magnification of several hundred times and he finally saw the disease.

It looked like measles or chicken pox of the brain. The cortex was speckled with crusty brown clumps ( we now call them plaques) too many to count. They varied in size, shape and texture and seemed to be a hodgepodge of granules and short, crooked threads, as if they were sticky magnets for microscopic trash.

The plaques were nestled between the neurons, blocking their communication with one another. Alzheimer could see them with any stain at all but they showed up best in a blend of magenta red, indigo carmine and picric acid. 

A different stain revealed what Alzheimer called, " a tangled bundle of fibrils" ( weedy, menacing strands of rope bundled densely together). These tangles grew inside the nerve cells, strangling them together.

Alois Alzheimer had discovered that Aguste Deter had not lost herself.

Rather, her "self" was taken from her.

Thank You...Alois Alzheimer!

Peggy's brain is the description of Aguste Deter's brain.

Peggy told me years ago that she was losing herself and the way that she talked to me, I knew that in some way, she felt responsible for her condition. She tried so many things to get her function back.

She was ashamed and embarrassed that her memory was failing and that she would get lost driving.

Oh Peggy! I wish that you could understand me today!

It was not your fault! You did not lose yourself!

Your "self" was taken from you.

You are too far advanced to remember who you were but Peggy....

I remember you...just like you were before Alzheimer's disease took your mind from you.

I made a promise to you before you completely forgot your life and I am keeping that promise.

I am writing about what this disease has done to us, to your family and to everyone who knew the Peggy Jane that we knew.

Your brain was taken from you but the "you" that is in our hearts will always be....

Peggy.

I Love You Today, Peggy!

Mary Louise


 

Tuesday, November 21, 2006

MEMORIES...THE GOOD, THE BAD, THE UGLY

I think that memory has three parts...........

The Good, The Bad, The Ugly.

Peggy's memory has been erased and she doesn't have to deal with the three phases any longer. Or does she? 

What happened yesterday or an hour ago is gone from her brain, or is it?

Does she have to deal with the good, the bad or the ugly of her memory?

If she does, how does she cope with the flood of thoughts that can sometimes be frightening?

Personally, I like to remember all the good things that are stored in my memory. I would just as well have the bad and ugly erased.

But the truth is that we learn so much more from the bad and the ugly.

Have you ever thought about how memory works in our minds?

We RECALL good memories and this takes thought as we pull the good memories to the front of our mind. The bad and ugly memories just pop into our minds at any time....uninvited.

Every time I get on an airplane to fly, a bad memory floods my mind, no matter how hard I try to forget that near crash. The memory is burned into my mind and only comes out to haunt when I arrive at an airport. I don't have to try and recall it...it is just there...uninvited.

I know that Peggy's good memories have been erased but do the bad and ugly memories still come into her mind uninvited?

I have also wondered if she dreams at night. Does she have bad dreams occasionally like everyone else or are they gone as well?

I have so many unanswered questions about what Alzheimer's disease does to the brain.

I hope that the bad and ugly memories in Peggy's mind have been erased along with the good ones.

I hope that just like a new born baby...her memory and mind is clear except for the love, care and food that she needs at the moment.

I hope this is true because how could she understand the sudden, re -lived fear that accompanies a bad memory?

When I relive a bad or ugly memory, I can reassure myself that it is over and not real in my today world.

What about Peggy? Does she still have bad and ugly memories that visit her.....

Uninvited??

I Love You Today, Peggy and wish only good thoughts when you have flashes of memory.

I pray that only good memories are present in your mind on the ocassional days that you do remember.

I pray the the bad and ugly memories have been erased never to come and visit you...

Uninvited.

Mary Louise

Friday, November 17, 2006

MESS WITH MY SISTER...MESS WITH ME!

I have learned that you cannot watch someone you love disappear before your eyes and not be affected on a very personal level.

When I forget a name or can't recall something quickly....I am concerned.

I have learned that you cannot remove yourself from the fear of  getting Alzheimer's disease or Picks disease but have to find ways to live with the possibility.

I have learned to live with this fear can be debilitating in living your life...if you let it.

My Doctor and good friend has told me that there is a test that I can take to know my possibilities concerning the diseases. He also said that if the test came back positive that it was no guarantee that I would develop the diseases.

I gave having the test long  and serious thought and have decided not to have the test.

I thought...What would I do different if I consented to the test and they came back positive?

My answer was... nothing.  Many areas of my life have had considerable growth since I started watching Peggy disappear.  I have learned to slow down and live in the minute, the hour and the day.

I don't worry about what people think of me like I used to.  I don't worry if everyone doesn't like me like I used to.

Now, I am comfortable with knowing that everyone will not like me or approve of who I am and what I do and that is all right.

I have learned because of Peggy journey, that each day is truly a gift.

I have learned that there are no guarantees in life no matter how hard you try.

No guarantee that our health will always be good and that life will always play fair. It is not a scary possibility to me but a simple reality. A reality that reminds me to live today... to not let yesterday and tomorrow rule who I am today.

Life and health have not been fair to Peggy but because of her struggles...

I have learned how to live.

Because of her struggles, I have learned to live every day and every minute.

I know in my heart that if I ever start to disappear...

I have a husband, children, a brother and two other sister's who will walk the path with me even if I  forget who they were in my life.

NO ONE KNOWS BETTER THAN A SISTER....

HOW WE GREW UP.

NO ONE KNOWS BETTER THAN A SISTER WHO OUR CHILDHOOD FRIENDS WERE.

NO ONE KNOWS BETTER THAN A SISTER WHAT OUR FAVORITEGAMES WERE.

NO ONE KNOWS BETTER THAT A SISTER WHO OUR FIRST LOVES WERE.

NO ONE KNOWS BETTER THAN A SISTER WHAT OUR  FIRST HURTS WERE.

NO ONE KNOWS BETTER THAN A SISTER....OUR LIFE HISTORY AND LIFE PRESENT.

NO ONE KNOWS BETTER THAN A SISTER.....

THAT I WILL NEED THEM IF I EVER START TO DISAPPEAR!

Peggy is our baby sister and we will continue to be there for her even though we are all miles apart.

We are there for Peggy in love as we were when we grew up together. 

Our motto was then and is now...

MESS WITH MY SISTER...MESS WITH ME!

I Love You Today, Peggy!

Mary Louise

 

 

Saturday, November 11, 2006

FROM THIS SIDE OF ALZHEIMER'S DISEASE

CAN YOU MEASURE THE WORTH OF A SUNBEAM,

THE WORTH OF A TREASURED SMILE,

THE VALUE OF LOVE AND OF GIVING,

THE THINGS THAT MAKE LIFE WORTHWHILE?

( Anna Garnett Schultz)

I received a mail recently that suggested that I didn't understand what it was like to be a full time care giver. The mail also said that my journal was only about my feelings and hasn't helped anyone at all, especially my sister.

I will agree that I am not a full time care giver.

I will also agree that my words are about my feelings as I watch Peggy disappear.

I must also agree that writing this journal has done nothing to help Peggy.

My writing is totally selfish, I understand that very well.

But I do hope that by keeping this journal, I have put a light on what it feels like to watch someone you love disappear. A light on  the devastation of losing someone you love who is still living and breathing.

 A small light on what it feels like from this side of the disease.

Not as a full time care giver, which would be a difficult task but as........

A sister, who loves her sister and continues to struggle with a mountain of feelings as I try to let her go with all the dignity and strength that I possess.

I am amazed by the courage and tireless efforts of full time care givers who work every day, giving care to loved ones who are dying from many diseases and not just Alzheimer's disease.

I am Peggy's sister and I love her and I will continue to write about my struggle and my feelings as I continue to....

Watch Her...Disappear!

I Love You Today, Peggy!

I know that you love me and are proud of me and that is all that really matters!

Mary Louise

Tuesday, November 7, 2006

VOTE TODAY.........

WE HAVE A DUTY TO PERFORM TODAY....

WE VOTE AS A FREE NATION....

VOTE TODAY BECAUSE THERE ARE SO MANY PEOPLE WHO CANNOT GO TO THE POLLS AND VOTE...

 BECAUSE

THEY HAVE FORGOTTEN ........

I Love You Today, Peggy!

Mary Louise

Monday, October 30, 2006

NO POWER

We  were supposed to turn our clocks back on Saturday night in Ohio.

The big...Fall Back.

We never got the chance to change our clocks because our power went off at 3:00 pm and didn't come on again until 5:00 am the next morning.

It was very quiet in the house with no television, computer or radio. When night came, it was dark inside the house and dark outside as well.

One never notices the power in our homes until it is gone.

I forgot how our senses are bombarded with the sights and sounds of our modern world.

Alone in the dark, I found myself with....... me.

There were no distractions to keep my mind busy and to keep me from being alone and thinking.

I learned that being without power every once in a while is a good thing because it forced me to be with me with no outside distractions.

It forced me to take charge and find ways to be comfortable in my home without power to light my night.

I thought about how the power in Peggy's brain is being shut off a little more every day.

I was able to find flash lights and lanterns to light the night in my home.

Peggy cannot do that for herself. Her power is turned off and she has no way of taking charge of her situation.

I decided to use the time without electrical power, as a time for reflection and to get to know me again. I knew that eventually, the power will be restored and my life would go on as usual.

I found that after a period of adjustment,  I was comfortable in the dark with no television, radio or computer to keep me company.

There was nothing to keep me from being with the one person that I really need to get to know again....

Me!

When our power came back on and the darkness of the house was gone and it was bright again, I was the first one to shout...ALRIGHT!!!!!!!

I love the light in our home but it was good to sit in the dark...

Just using the time to get to know me again and thinking of Peggy.

Peggy is lost in the dark with no power trucks and brave people to work through the night to restore the power to her brain.

My prayer for Peggy during this black out was that she is comfortable in the dark of Alzheimers disease and is not afraid to live in the night of the disease.

I still struggle with the knowledge that there is nothing that I can do to restore the power to her brain.

Sometimes, I need to find the balance between my need to fix things for her and just being comfortable to sit in the dark.

I cannot restore the power to Peggy's brain no matter how much I wish that I could.          So....................

I sit in the dark place of my mind with wonderful memories of Peggy to light my night.

I Love You Today, Peggy!

Mary Louise

Thursday, October 26, 2006

A LETTER FROM MY SISTER, BARBARA

( Shared with Barbara's permission)

 Dear Mary Louise,

Ray and I  visited with Peggy in the assisted living home last weekend.  I still have not processed all of it yet. 

 
 It was one of the hardest things I have ever done. She is the youngest one in the complex only 58 years old.  Everyone else was in their 80's and 90's. 
 
When we arrived, she was sitting at the nurses station and the staff told her she had visitors and she smiled as she was getting up from her chair.  She laughed some too.
She really enjoyed Ray because he joked with her.  Brooke and Richard arrived around 1:30 PM.  She laughed when Brooke told something that happened when she was a small child. 
 
Peggy  knows some things, too.  I could say Peggy...come sit here and she would. 
 
 We took her out of the complex but had her back by dinner time.  At lunch after I showed her how to feed herself she did it for a while. But I had to feed her at supper. 
 
I could go on and on about the visit but I still need to process the time spent with her.  
 
On Sunday, when we arrived she was sitting at the dinner table staring out the window and it didn't matter that we were there because she just kept staring outside. 
 
      After 30 minutes, I told Ray I needed to leave because I was starting to cry and feared I would break completely down. She turned when I left and just looked at me. 
 
 It was so hard to leave her there but I know it is the best place for her now.  How her husband does it, I do not know but only know that God has him completely in his hands.  It has to break his heart.  

  Sunday night when I called him, he was brushing her hair.  He gets her hair done each week and tries to keep her looking nice.  She would be horrified to know how she looks now.              Ray was pleasantly surprise about how well she looked and I was too.  She hasn't changed much in the way of how looks when I saw her in July 2005. 
 
I know God has her now and am grateful that she accepted Christ when she was young because if she had not done that,  I don't know if I could handle everything. 
 
There were good times spent with her and I am grateful for that. 
 
She constantly whispers and you cannot tell what she is saying because it is all in her mind but she tries to keep a beat with her foot when she hears music. When I asked her if she liked to sing she would whisper some type of song. 
 
There were some funny things that happened on Sat with other people in the home.
 
She liked my watch so I left it with her along with an ALABAMA bracelet  and a sisters bracelet too.  She had the watch on the table when we got there Sunday morning.   
                                                                  
She wasn't smiling much on Sunday and just sat there staring out of the window.                                                                    The only way I can describe it was that she looked "hollow". 
 
 She use to sing Amazing Grace and Jesus Love Me but she can't now.  When we left her, we took her up front and a lady was sitting there with a Broadman Baptist Hymnal in her lap.  I told her Peggy use to sing Amazing Grace and Jesus Loves Me.  She looked straight at me and said "that song... Jesus Loves Me says it all!  Then added that she was Presbyterian and so were her parents and her brothers and sisters.
Peggy loved music especially country music.  At Stepping Stone, where Peggy is, they play classical music and what they  played, sounded like funeral music to me. I wanted to put country music on for Peggy.
We stayed with her from 11 AM to 6:30 PM on Saturday. 
 
It is heartbreaking only because she is so young! But she is where she needs to be and Ricky takes such loving care of her and she smiles when she sees him. 
 
She didn't  know who we were but knows Ricky is someone who comes to see her everyday at a certain time.
I believe she might have recognized my name. 
 
Ricky has decorated her room and it looks so nice.  He has the family pictures set out, too. 
 
ML, her doll is one her bed and the staffer said that she will sometimes hold it.  I took a picture of her with the doll and amazingly, they have the same haircut and color. I have several pictures of her with "her baby" and will send them to you.  
 
 Again, our visit on Saturday was good but it was still hard to leave her. 
 
It makes you re- evaluate your life and has taught me that time is so short.
 
Peggy still has a sense of humor and laughed when she hit her head on a handle while trying to get into the car when we took her for a ride. 
 
 Another note...since Ricky was out of town another male patient, sitting at her table got her napkin out and placed her silverware so she could reach it and told me that her husband was out of town and he had to help her at the table. 
So sweet don't you think? 

It was a good visit and when I talked to Ricky Sunday night, he was combing her hair after he had taken her to the rest room.  
 
Also, I noticed one other thing....while she was eating lunch she didn't spill any food on herself! 
                          
I do that all the time!!!! 
 
With love, Barbara
 

Tuesday, October 24, 2006

THROUGH PEGGYS EYES

We just returned from an 8 day cruise of the Eastern Caribbean.

We had a relaxing, wonderful time on the ship and my husband and I enjoyed being together.

We visited the same ports that Peggy and her husband visited on their last cruise together.

I enjoyed sitting on our balcony and looking at the sea as we skimmed the top of the blue water.

One evening, I sat on the balcony in the early hours of the morning. I watched the black night turn into a blanket of stars lighting up the sea. I thought of Peggy cruising the same waters when her mind was crisp and her eyes could take in all of the night and see all of the stars.

I felt a strong connection to her that evening. I knew that she had seen the same ocean and the same stars and ports from the balcony of her cabin so many years earlier.

I felt a tug of sadness in my heart because I knew that I could never share my memories of this cruise with her.

I was on the deck as we slid into the Port of St. Thomas. I looked at the beautiful landscape and knew that Peggy had seen the same sights on her cruise. I felt close to her as we walked the streets of St. Thomas.

 I thought of Peggy when we reached  St. Maarten and glided into the port.

I was seeing all of this beauty through my eyes but also....

Through Peggy's eyes......

I felt a connection to her as I took in the beauty of the Islands for I was looking and seeing the same things that she had seen years earlier.

I thought of the excitement that she must have felt because of the excitement that I felt with each day at sea and each port of call.

I was comforted just knowing that I was seeing everything on this cruise through....

Peggy's eyes.

I love You Today, Peggy!

Mary Louise

 

 

Thursday, October 12, 2006

FROZEN EYES

Peggy's eyes have told the story of her descent into Alzheimer's disease.

Before Alzheimer's disease entered her mind, her eyes were green and sparkled with light and laughter.

When she began to notice that something was wrong, her eyes grew serious as she submitted to test after test with no diagnosis.

Time passed and fear showed from the window of her soul. She knew something was wrong but did not know what was happening to her.

Then, I remember when her eyes began to show serious fear because she had started to forget major events and appointments.

We all do that kind of thing in our daily lives and it is perfectly normal. The difference with Peggy was that she didn't remember that she had forgotten.

The eyes can show a range of emotions.

The eyes reveal what Alzheimer's disease does to a mind. It blocks out the light of the brain and the eyes grow dark and blank.

Peggy's eyes are no longer green and there is no sparkle left in them.

Alzheimer's disease has frozen her brain and her eyes have turned cold. The stare from her eyes is....

Blank.

But I know that deep inside of her mind, there is still some of the Peggy that I knew......Still some of the light and laughter left somewhere deep inside of her.

Only..............

It is frozen and has no way to thaw and work its way to the windows of her soul.

I Love You Today, Peggy!

Mary Louise

Sunday, October 8, 2006

OUTSIDE OF MY WINDOW

Sometimes, when I think of Peggy, I am looking through a window pane in my mind.

I am looking through that window and seeing the Peggy that I used to know.

Looking through my window, I see her healthy and laughing.

Looking through my window, I see her talking with emotion.

Looking through the window in my mind, I see her the way she was and not the way she is today.

Then, something began to happen as I gazed through the panes of my memory glass.

Alzheimer's disease has turned off the sun and is drawing the curtains on Peggy's life.

I am aware that I see what I want to see in the window of my mind about my sister.

 Peggy is getting harder to see through the glass of the real world window.

I am glad that the sun always shines and the curtains are always open in the window of my mind.

I can always go to my memory, open the window and see Peggy laughing and enjoying life.

Windows are wonderful things. They keep the cold out and the warm in......

Windows let us view the outside world without experiencing the extreme weather conditions on our skin.

 The window in my mind keeps my memories of Peggy just beyond the clear glass panes.

The window in my mind keeps the memories of my sister....warm.

The window in my mind keeps my memories of Peggy safe from the cold of Alzheimer's disease.

I Love You Today, Peggy!

I'll see you outside of my window today! My curtains are open and I have polished the window panes. I will open my window and let the fresh air inside.

I'll see you Peggy........

In the window of my mind.......

The way you were.

Mary Louise

 

 

Friday, September 29, 2006

A MORNING CUP OF COFFEE

Dear Peggy,

I was thinking of you this morning as I drank my coffee.

When we got together, we spent a lot of time talking as we lingered over our morning coffee.

I'm sorry that you have forgotten that memory of us.

I'm sorry that you have forgotten...us.

My heart hurt this morning as I looked into the hot, dark liquid, wishing that it could tell me the secrets that are locked in your mind now.

I watched the surface of the coffee as it moved and shimmered with the morning light.

There was no magic on the surface of the coffee that would help me understand why you were chosen for this disease.

I just know that I miss you and.....

I am missing you.... Remembering me this morning.

Most of all Peggy,

I will always love you and remember the little things that we did as sisters.

Like, drinking a morning cup of coffee together and celebrating the day and being together.

We are more than just miles apart now but that is OK because..

 I can remember for both of us.

I Love You Today, Peggy!

Mary Louise

 

Monday, September 25, 2006

WHISPERING HOPE

I was privileged to hear Peggy's voice on Saturday night.

It was not the strong voice with a musical lilt that I remembered. It was a soft, desperate sounding whisper.

She whispered in a fast monotone sound. While she whispered, there were no breaths that I could detect.

I kept telling her who I was and that I loved her but the whispering never stopped. She never seemed to hear my words.

Was she trying to tell me something? We used to whisper when we were children and the lights had been turned out at night.

Or, if we were in a place where talking was not allowed.

Was she reaching out to me in her whispers? Did I miss something in her soft, rapid words that I needed to hear to help her in some way?

After I hung up the phone a barrage of memories filled my mind.

All the whispering of our life time together came flooding back.

When we were girls we would harmonize while singing songs.

 Once a month, we would go to a park near our home and sing for a Senior Citizens group.

We started off our show with a song from Fats Domino called "I'm Walking" and we even added choreography. We always ended our show with a song called "Whispering Hope".

Saturday, while listening to Peggys rapid whispering on the phone, the lyrics of "Whispering Hope" floated back from the stage of Harrison Park where we stood and sang so long ago.

I could hear us singing that song to the people seated in the audience.

I just hope that Peggys whispering yesterday contained the hope of that song.

Here are the words to "Whispering Hope" and I sing them this morning for Peggy.

WHISPERING HOPE

SOFT AS THE VOICE OF AN ANGEL

  BREATHING A LESSON UNHEARD

HOPE WITH A GENTLE PERSUASION

  WHISPERS HER COMFORTING WORD

 

WAIT, TILL THE DARKNESS IS OVER

   WAIT, TILL THE TEMPEST IS DONE

HOPE FOR THE SUNSHINE TOMORROW

   AFTER THE SHOWER IS GONE.

 

WHISPERING HOPE

   OH HOW WELCOME THY VOICE

MAKING MY HEART

  IN ITS SORROW REJOICE.

 

IF IN THE DUSK OF THE TWILIGHT

   DIM BE THE REGION AFAR

WILL NOT THE DEEPENING DARKNESS

   BRIGHTEN THE GLIMMERING STAR?

 

THEN, WHEN THE NIGHT IS UPON US

   WHY SHOULD THE HEART SINK AWAY?

WHEN THE DARK MIDNIGHT IS OVER

   WATCH FOR THE BREAKING OF DAY.

 

WHISPERING HOPE

   OH HOW WELCOME THY VOICE

MAKING MY HEART IN ITS SORROW REJOICE.

 

After all those years of singing that song with Peggy, I finally understand the message of the song.

Peggy whispered to me yesterday and I remembered the words to a song we sang so many years ago.

A song that made my heavy heart feel lighter after hearing her give me what I needed yesterday....

WHISPERING HOPE!

I Love You Today, Peggy!

It was nice to hear your whispering hope. Thanks!

 

There is No time like the old time.....

when you and I were young!  Oliver Wendell Holmes

 

Mary Louise

 

Monday, September 18, 2006

CLIMBING THE GRIEF LADDER

If you have followed the entries of my journal about Peggy, you know that my emotions run the entire gamut of feelings.

I feel hopeful and then down.

I feel happy and then sad.

I can go from zero to ten in one hour of thinking about her and how much I miss having her in my life.

That is the one truth about grief.

It is never truly.......... Over.

We learn with time, to manage the grief more constructively. We learn to expect the highs and the lows.                               We learn that we cannot change the facts of a situation.

We essentially learn to live in the mist of our grief and survive the ups and the downs.

Peggy has Alzheimer's and she is disappearing a little more every day. I can't change that for her no matter how much I want to change it.

If, I can't change this fact, I must learn ways to deal with the reality.

Sometimes...Reality just isn't the way we planned it to be.

Reality is real, it is the truth.

So, I will continue my journey up the steps of grief.

At first, it is like trying to climb a ladder where the steps are placed to high and to far apart for the length of my legs.

I leap from the first step to the next, with tired heart and no energy. Finally, I manage to leap to the next step, I land on my knees with my fingernails gripping the step, one level up. And it goes on until I reach the top step. When I reach the top of the ladder, I look around and am proud of my climb. I take a deep breath and think that I am doing just fine.

Then I hear a song, read a sentence, see a picture and I can see and hear Peggy. Her absence is painfully real again.

All of a sudden...

I am back on the bottom step of the ladder and am on another climb up the ladder of grief.

The difference is, with time...

The steps do not seem as tall or far apart and that makes the climb a little easier but....

I know that my climb up the grief ladder will last for the rest of my life.

I know this because I will never stop missing my sister as long as I have life.

So....... I will climb.

I will climb over and over again until I don't have to watch where I am going as I climb the ladder.............                      

Because I will know the way.

I Love You Today, Peggy!       I Miss You!

Mary Louise

 

 

Thursday, September 14, 2006

BREATHING BACK THROUGH TIME

Peggy has entered a new phase of Alzheimer's disease.

She has forgotten how to feed herself and must be fed.

This disease is interesting in the way it takes a person back through time.

When she was a baby, she had to be fed, clothed and taken care of as any baby would be.

Peggy has entered the baby phase.

She has traveled from a mature woman, back through Alzheimer's time.

I have often wondered what it would be like to travel back through time to another era in history. To see the history that I have lived unfold before my eyes.

If I were able to do that, I would have a difficult time not saying...Don't fight that war, don't launch that shuttle, don't go to work or visit the Twin Towers on September 11th 2001.

I could change history by giving those warnings. But...would anyone listen?

If I could go back to the first time that I noticed a difference in Peggy, could I have given her a warning for her to get help sooner.

Could I have changed her diagnosis by my early warning?

One day in the future, people will feel sorry for our generation. They will shake their heads and wonder why we didn't know the answer to Alzheimer's and Pick's disease sooner. Just as we look back at the millions of children who died from Measles, polio and other childhood diseases.

My Grandfather died from Gallbladder surgery in the 50's. Now, it is a routine surgery with tiny surgical wounds.

One day in the future, Alzheimer's disease will be a fixable disease.

But for now, in our time...we are losing intelligent, wonderful people who continue to travel back through the time of Alzheimer's disease.

They travel from an adult with hope and promise for a bright future to a small infant who must be taken care of day and night.

As Peggy travels back through the time Alzheimer's has given to her, she will not only forget how to feed herself....

She will forget how to breathe.

One day in the future, there will be no Alzheimer's and Pick's disease...One day....

But for now, until that day comes....

Breathe, Peggy, Breathe.

Each breath that I take is a prayer for you. A prayer that you will not forget how to breathe today, tomorrow or this year.

I Love You Today, Peggy!

Just Breathe.

Mary Louise

 

Monday, September 11, 2006

SEPTEMBER 11TH 2001---SEPTEMBER 11TH 2006

I remember this day in 2001.

I was watching the television when the second plane hit the tower in New York City.

I remember thinking....

I'm glad that Peggy doesn't know what is happening today.

I'm glad that she is inside of her mind and isn't effected by the outside world.

I was glad for Peggy that day but sad for me.

I couldn't call her and share my feelings. I couldn't tell her that I was scared.

I can't call her today, five years later. I can't tell her about the scared places in my life.

Even so....I'm glad that she was spared September 11th, 2001.

I Love You Today, Peggy!

I miss sharing with you.

It doesn't have to be a day like September 11th to make me miss our sister sharing.

It just has to be...............

 A regular day.

Mary Louise

Tuesday, August 29, 2006

DIGNITY AND GRACE

I had an interesting thing happen to me.

I went to a new dentist and was sitting in the waiting room looking at a magazine.

A woman came in and sat across from me. I said hello and went back to reading the magazine.

She started a conversation and we began to talk.

She said that her mother had Alzheimer's disease and she was going to visit her later in the day.

I told her about Peggy and that she, also had Alzheimer's disease. I told her that I knew every case was different but that I understood some of the pain that she was experiencing.

She got tears in her eyes and agreed with me.

She was called into the dentist office and I continued to read the magazine while waiting to be called for my appointment.

I did not see the woman again while I was there.

After my appointment, I went to the window to check out. The woman checking me out said; Barbara, the lady you were talking to commented on what you said about her mother.

She said that you looked so together that it shocked her to hear about your sister and that you must not be very close to her.

She said that you looked like someone that never had anything bad to happen.

I really wasn't sure how to take what she said.

I have thought about her statement.

Some people carry all of the pain of their lives on their faces.

You know immediately when you meet them that they are dealing with great pain and suffering.

Some people carry the pain and suffering in their hearts.

It does not make the pain of watching Peggy disappear any less of a trama because I do not carry the pain on my face.

Every one deals with pain the best way that they can.

Judgement can be hurtful.

Maybe, I should stand on a corner, beat my chest and cry...I'm watching my sister....disappear.

Or just maybe, I approach my pain in a different way.

I  carry my pain inside and write to let it out.

Peggy would be embarrassed and angry with me if she thought that the pain she has caused by disappearing had etched lines into my face and showed every day.

My pain about Peggy is real but just not on display for everyone to see when they first meet me.

I only share the depth of my pain with people that I trust to listen and people who will not judge the level of my pain by the look on my face.

I hear the words of my Mother and Grand Mother and have integrated them into my life.

"I don't care what happens to you in your life. You can still smile through your tears. Comb your hair and put on your clothes.  Put on a little lipstick and a little rouge. You can handle anything that comes your way with grace and dignity".

I Love You Today, Peggy and I want you to know that......

 I put on my clothes, combed my hair and added a little lipstick and blush. I am smiling as I remember you with all the grace and dignity that I can find.

Mary Louise

Friday, August 18, 2006

AOL JOURNALS 3RD ANNIVERSARY

HAPPY 3RD ANNIVERSARY AOL JOURNALS.

AOL Journals 3-Year Anniversary Badge

Writing this journal and having the support of so many people in J-Land is helping as I navigate through the grief of...

WATCHING MY SISTER, PEGGY....

DISAPPEAR.

Thank you, AOL Journals.

Thank you, to all who read my journal.

Thank you, to all who comment and give me the courage to continue writing.

I Love You Today, Peggy!

Mary Louise

THE DOOR

  Have you ever gone to someone's house and expected them to be at home?

You walk up to their front door, ring the bell and wait.

You wait for the door to be opened wide.

You wait for a warm greeting.

You wait for your friend to ask you to come inside and visit.

You stand on the front porch and wait but no one comes to let you inside the house.

You stand there and ring the doorbell again with no response and you find yourself shifting from one foot to the other.

You walk around the house to check and see if perhaps they are in the back yard.

You walk back to the front porch a little confused. Could you have gotten the day wrong?

No one is home even though they knew that you were coming to visit.

Then, there has to be a decision on your part. Do you keep standing on the porch and keep knocking or do you turn around, walk down the walk and get in your car and drive away?

This is an illustration of what it is like to visit someone with Alzheimer's or Pick's disease.

I know that Peggy is home........

I know that Peggy is in there but where?

She has forgotten how to open the door to her family and friends.

The lights are on but it appears that no one is at home.

There are days where I wonder what I am doing to myself by continuing to knock on the door of her mind.

Should I turn around and leave because she doesn't answer her door?

Should I ?

I have thought about this a lot.

I have thought about never coming back to the door of her mind only to be turned away by no answer to my call.

I have thought about it but could never do it because I know that Peggy is in there somewhere.

Who knows...

I may get lucky again one day and she will open the door to her mind.

That one day when her door to her mind opens wide and she says....

Hi, ML, I knew you would come!

I Love You Today, Peggy!

Mary Louise

 

Friday, August 11, 2006

PEGGY STYLE

It has been hot and humid here lately.

I step outside of my air conditioned home and hit a wall of heat.

How can it be so hot and feel so wet?

It is not only hot but feels sticky, it is oppressive. The air is so thick with heat and water that I feel like I could chew it or cut it with a knife.

There is no chewing or cutting the wall of heat and humidity that awaits me as I navigate to the outdoors.

I do have options...

I could stay in the air conditioned house, be a prisoner of the heat but stay cool and watch the world go by from my safe place.

I could go from the cool house to my hot car, turn on the air conditioning and wait for the car to cool so that I could drive the car in cool comfort. Arriving at my destination, I could run through the oppressive heat into a building where I will be be in the air cooled environment again.

All of this running to avoid something that is oppressive.

Peggy ran from the oppression of Alzheimer's disease for a while but it caught her just like the heat and humidity catch me no matter what I do to avoid it's consequences.

Sometimes........

There is no place to run and no place to hide. We must deal with life as it comes to us. We must do what we can to make a moment better for ourselves and not become a prisoner of our thoughts or of the oppression that we fear awaits us.

I will do what Peggy did..

I will face what oppresses me.

Something as simple as the heat and humidity or as great as the fears that I hide in my heart..but I will do it in Peggy style.

 With my eyes wide open and my head held high.

I am privileged..

I still remember my challenges and my fears. That means that I  have control over how I will react to everything that happens around me.

Peggy continues to be my teacher.....

Even from the dark prison of Alzheimer's disease, where she lives.....In her safe place.

I Love You Today, Peggy!

Mary Louise

Tuesday, August 1, 2006

THE CHA CHA CHA

Music has always been an important part of my life. I have the radio or stereo on  in my home most of the time. A house without music is too quiet for me.

A song came floating through the house this morning and made me remember 1805 St. Charles Court. It made me remember cleaning off the table and doing the dishes on a summer night when we were girls.

When we were girls, I signed up for dancing lessons at Harrisson Park. It was a community park close to our house.

The lessons were free and the lasted for four weeks. We learned how to dance the waltz and the cha cha.

After learning the dances, we decided that the Cha-Cha was the best dance to dance while cleaning off the table after supper was over.

It was also the best dance to do while washing and drying the dishes and putting them away.

Peggy would pick up a dish from the table on 1. Set it by the sink on 2 and cha-cha back to the table for another dish.

I would wash a dish on 1, rinse it on 2 and Cha,cha, cha to put the dish in the wire drain on the sink.

It took us a long time to clean the kitchen on those hot summer nights in Birmingham but it was a lot of fun for both of us.

Now, we are doing a different kind of dance.

Peggy is doing the cha cha with another partner but there is no laughter, no excitement, no fun.

She will continue to do this dance until the music stops.

I would love to have the power to go back to 1805 St.Charles Court. To a hot summer night when the cha cha blared from the radio and Peggy and I were dancing the cha cha while  doing the dishes.

How quickly the music faded from Peggy's life

Now, when a song comes on the radio with a cha cha beat, I stop what I am doing and cha cha for both of us.

 I miss dancing the cha cha in the kitchen of 1805 St. Charles Court.

If it is true that memories and sounds of the past residents stay in the walls of a house......

 On a hot  summer night, who ever is living in our house on St. Charles Court will swear that they hear the strains of the cha cha while sitting in the kitchen.

They just can't figure out where the music is coming from....

But I know.

I Love You Today, Peggy...Cha, Cha, Cha!

Mary Louise

Wednesday, July 26, 2006

SEARCHING FOR SIGNAL

We have satellite television.

Sometimes, the screen goes blank even when there are no storms in the area.

It  will just go off and in the left hand bottom of the screen,  a message appears.

The message says...Searching for satellite signal.

It usually doesn't stay off long unless we are in the mist of a storm.

Last night, I was watching a program, the screen went blank and the message appeared.

I thought about Peggy and how much that message could refer to her.

I have lost the signal to connect to Peggy.

Every once in a while we will connect for a brief moment and then the message appears again.

Searching for signal

 And again, our connection is lost.

I Love You Today, Peggy!

Mary Louise

Friday, July 21, 2006

A WHISPER OF HOPE

JULY 21, 2006

I was able to hear Peggy's voice last night. Her husband held to phone to her ear because she has forgotten how to hold the phone.

I told her that I loved her today and I heard a faint whisper of her voice.

She is talking to herself a lot now in fast whispers.

I wish that I could understand what she is saying. I asked her to talk louder but she just kept whispering at a rapid pace.

I was told that she seems happy and smiles a lot. I am thankful for that.

I got a few pictures of her last week at the nursing home. She looks the same but different, if that makes any sense. There is no light from her eyes. Only dark places where her green eyes used to be.

It was interesting to see her in the pictures in the nursing home with a room full of gray heads. She looks out of place. A young person among the elderly but she is actually more disabled than most of them.

She came back to the phone after I talked with her husband and  I said, Peggy, this is Mary Louise and then she said, Hello! 

I said, Peggy,  I love you, Today!

Her husband said she broke into a huge smile.

Does that mean she remembers me?

Does that mean she remembers my voice?

I will never know because Alzheimer's disease keeps secrets.

All I know is that my sister is living in the land of Alzheimer's disease and I am not welcome in that world very often.

I received a second of remembering last night, not by voice but by her smile and that has to be enough because a second of remembering is all that she has to give.

It makes me sad to know that she isn't coming back to us.

That is a fact of life that the whole family deals with every day.

I could have cried when I hung up the phone last night. I did tear up but no tears streaming down my face.

I smiled because I thought that Peggy remembered me for a second.

For one second, Peggy sounded like herself when she said Hello!

I Love You Today, Peggy!

Mary Louise

Saturday, July 15, 2006

MY SISTER, PEGGY

The desire to be and have a sister.....

is a desire to know and be known by someone who shares blood and body, history and dreams, common ground and the unknown adventures of the future, darkest secrets and the glassiest beads of truth.       

Elizabeth Fishel

I Love You Today, Peggy!

I Miss You!

Mary Louise

 

Wednesday, July 12, 2006

IT IS OUR TEARS

I was driving yesterday and stopped at a red light.

I glanced out of the windows and saw a dark, threatening sky.    I heard thunder rumbling in the distance.

It looked as if the clouds would open at any moment with torrents of rain.

I was waiting for a down pour and all that happened was big rain drops, a few seconds apart hitting the windshield.

I watched as a big raindrop hit the windshield in a large ball and then tear drops ran down from the splat.

 I watched one splat after another hit the windshield. It seemed to me that the splat of water was in shock as it hit and then formed tears that ran away from it's center.

I thought how much that splat of water reminded me of Alzheimer's disease and how it hit our family.

Alzheimer's disease hit Peggy in a splat and it was a shock to all of us. We watched as it continued to hit her over and over again, like large rain drops falling from the sky.

It continues to hit her every day but Peggy doesn't cry. 

It is our tears that run down from the splat that Alzheimer's made when it hit Peggy.

It is our tears that fall as we watch the dark sky over her head.

It is our tears that form a lake in our hearts.

It is our tears that would drown our spirits if we didn't keep our heads up as we cry.

It is our tears that continue to fall as we watch her disappear.

Because Peggy....................

Has forgotten how to cry!

So, it is our tears that will always cry for Peggy.

I Love You Today, Peggy!

Mary Louise

Saturday, July 8, 2006

THE LITTLE THINGS

Last night I was thinking about Peggy, as I do many nights in the quiet.

It's funny how my mind thinks of the small things about her.

Her laugh or the way she would wave her hand while she was talking. The way she told a joke and would laugh through whole joke as she was trying to tell it. I would get more tickled at the way she tried to tell it than the joke itself. The way she would toss her head so that her hair would move, especially when we took pictures. It was our model pose, turn away from the camera and then back. Sometimes, we would just laugh at silly things and we would laugh until we cried.

So many memories of the small things about Peggy.

Sometimes, I still cannot believe that this happened to her. She was the youngest of four girls and so full of life.

How? Why?

The same questions that are asked by so many family members as they watch someone they love disappear.

Alzheimer's disease is devastating at any age but why did it strike someone so young, so bright, so active as Peggy?

Why?

Peggy is the youngest patient in the Nursing home where she lives.

Life is not fair sometimes and it certainty wasn't fair to Peggy who had so many years ahead of her.

That leaves me with questions that no one can answer.

How do I handle her leaving with grace and not only the fear that I too, will develop the disease?

What Peggy's disappearance has taught me is to live every day as if it was my last. I have learned that each day and each breathe is precious.

I really knew all of those things but I didn't truly understand the significance until ......

I started watching my sister...Disappear!

I Love You Today, Peggy!

Mary Louise

 

Tuesday, July 4, 2006

HAPPY 4TH OF JULY, PEGGY

Dear Peggy,

I know you do not remember all of our 4th of July's.

I miss you today and I miss knowing that you remember. I am just thankful that you are still alive even though your life and all of it's memories have been erased.

Max Lucado wrote this and it applies to you today.

You are valuable just because you exist.

Not because of what you do or what you have done....

But simply because............

YOU ARE!

I Love You Today, Peggy!

Mary Louise

 

Wednesday, June 28, 2006

DARK CLOUDS

My grief over watching Peggy disappear does not constantly cloud my everyday life.

My life is filled with many sunny days.

But every day or so a little black cloud will move over the sun of my day and block out the sunshine. Those are the times when I think of how much I miss having Peggy in my life. When I remember, the thoughts of her block my sun.

Then, the cloud moves away and the sun shines again in my day.

To stay under the cloud of grief would be too much.

There will be sunshine and dark clouds in my life.

There will be storms to endure and lightening will streak across my world as long as I live.

That is OK because if it was sunny all of the time...How would I grow as a person?

Peggy and watching her disappear will bring dark clouds and sad times but I refuse to stay seated under the dark clouds.

Some days are sunnier that other days and some days are dark with clouds blocking my view of life.

We cannot stop the storms of life but we can decide how we will react to them.

I will miss Peggy for all of my life !

But I know her and I know that she would come and hit me over the head if I sat in the shadow of a dark cloud every day.....

 Because of her.

I Love You Today, Peggy!

Mary Louise

Sunday, June 25, 2006

THE GRIEF RAG

I have thought about the differences between Alzheimer's disease and Picks disease. There is not much difference and the prognosis is the same.

How was Peggy chosen for the disease because it is a rare disorder?

What made her vulnerable? I ask that question a thousand times.

I could ask that question a million times and still not get an answer.

Last night, I thought of all that Peggy has missed during the past years. All the birthdays, all the Christmas', all the special family times. Thinking of this made me cry...again.

I could raise my voice and yell that this is not fair!

This is not fair to Peggy and it is not fair to me or to all the people who know and love her.

Life is not fair sometimes, I know that from living and breathing.

It really doesn't matter what takes a person that we love away.

The fact is that they are gone from our lives and they are not coming back.

I need to learn to deal with the emptiness and the pain.

I need to learn to go on with my daily lives.

I need to learn to deal with the anger of being left behind.

I need to learn to touch the emptiness but not hold on to it too tight.

Sometimes, I hold on to the emptiness that Peggy left to tightly.

I can be like a dog with a rag in it's mouth in a contest with another dog. Refusing to let go of the rag of my grief.

 If I let the rag go, the dog on the other end of the rag would win. It is difficult for me to let the other dog win and let go of my grief.

 When I refuse to let go of the rag of grief over losing Peggy...I die too.

 I die while I live.

I think that the person we love looks down on us with tears in their eyes when they see us dying from grief.

They could not control the fate in their lives but we have a choice.

We have the choice to die while we are still living. Continuing to hold tightly to our grief rag. Or we can learn from a life lived and let go of the grief rag and live again.

I can almost hear Peggy's voice shouting to me on some days.

For goodness sake, ML.....

LET GO OF THE RAG!

I Love You Today, Peggy!

Mary Louise

Friday, June 23, 2006

PICK'S DISEASE....REMEMBERING PEGGY!

Peggy saw a neurologist last week and we found out something new.

She may have Picks Disease. It is a first cousin to Alzheimer's disease and the prognosis is the same.

Here is some information on the disease.

What is Pick's Disease

Pick's disease is a relatively rare, degenerative brain illness that causes dementia. The first description of the disease was published in 1892 by Arnold Pick. Until recently it was thought that Pick's disease could not be distinguished from Alzheimer's disease during life. Consequently, it has been little studied, and much less is known about it than about Alzheimer's disease.

Pick's disease differs from Alzheimer's disease in several ways. First, the two diseases produce different abnormalities in the cells of the brain. Pick's disease is marked by "Pick bodies", rounded, microscopic structures found within affected cells. Neurons swell, taking on a "ballooned" appearance. Neither of these changes appears in Alzheimer's disease, and the pathology of Alzheimer's disease (plaques and tangles) is not found in Pick's disease. Secondly, Pick's disease is usually sharply confined to the front parts of the brain, particularly the frontal and anterior temporal lobes. This contrasts with Alzheimer's disease, which is more widely distributed. The two diseases also produce different neurochemical changes in the brain.

These basic differences between Alzheimer's disease and Pick's disease mean that the two tend to produce somewhat different symptoms. In contrast to Alzheimer's disease, in which early memory loss predominates, the first symptoms of Pick's disease are often personality change, and a decline in function at work and home. Personality change may take the form of apathy and indifference toward customary interests, or of disregard for social decorum and for the feelings of others. Poor social judgement, inappropriate sexual advances, or a coarse and jocular demeanor may be seen. Function declines because the patient simply does very little, or displays confusion and poor judgement. Patients may not be highly forgetful. Often times the patient performs well when directed to do something, but cannot undertake the very same thing independently. What is lost is the ability to initiate, organize, and follow through on even very simple plans and familiar activities.

As the illness advances, difficulties with language become common. Patients become unusually quiet, and when they do speak it may be slowly, in brief sentences. They may labor to make the sounds of words and their speech may sound distorted. Some become extremely apathetic -- they may sit for hours doing nothing at all unless prompted to do so by another, while others become extraordinarily restless, and may pace unceasingly. Some patients are hypersexual, and some, like a small child, may place anything they pick up in their mouths. Gluttonous eating occurs in some cases. Attention span is poor; patients seem to be distracted instantly by anything that they hear or see. Later in the disease, patients usually become mute. Restlessness gives way to profound apathy and the patient may not respond at all to the surrounding world. Eventually, they enter a terminal vegetative state.

Pick's disease usually begins after age 40 and is less common after age 60. It is a disease that invariably worsens. The average course is about 5 years, but it ranges from 2-15 years. It is rare, accounting for between 1% and 5% of dementia.

The diagnosis of Pick's disease is difficult during life, because its symptoms are so variable and because they overlap so much with Alzheimer's disease. A CT or MRI scan may show a pattern of atrophy that suggests Pick's disease, and neuropsychological testing may be helpful. In our experience, the experimental brain scanning techniques with PET and SPECT can be revelatory. However, it is very hard to be certain even with an extensive evaluation; Alzheimer's disease can produce the symptoms described above, and Pick's disease may produce symptoms typical of Alzheimer's disease. In all cases, it is critical to obtain a good evaluation in order to rule out treatable conditions that can cause these symptoms.

Unfortunately, neither the cause nor cure for Pick's disease is known. A few studies suggest that Pick's disease may have a genetic component, but most family members are unaffected. Other risk factors are unknown. The treatment of the disease is essentially the same as that of Alzheimer's disease; supervision and assistance for the patient aimed at maximizing his or her quality of life, medications to manage particular symptoms, and emotional and substantive support for the caregiver. The Alzheimer's Association and its network of support groups are an excellent source of help in facing this difficult illness.

I Love You Today, Peggy!

I wish things were different but today there is more reality thatyou will not be coming back to us.

PICK'S DISEASE OR ALZHEIMER'S........

EITHER WAY, PEGGY IS GONE!

I miss you!

Mary Louise

Wednesday, June 14, 2006

FAIR WEATHER FRIENDS

Peggy and I vowed to always be there for one another and we were until...Alzheimer's started making her disappear in her 40's.

I walk back through my mind to the day that we made our forever friend promise. Our promise was to always be there for one another.     

It was a hot summer day in Birmingham, Alabama and we were keeping cool playing with the garden hose in our front yard. We ran through the cold water screaming and laughing for hours.

Our mother was sitting on the porch with her sister, who was visiting. I heard mother and Aunt Louise talk about fair weather friends as we ran through the cold water of the garden hose.

We finished our play and sat on the steps below mother and Aunt Louise. We listened to every word that they said and smothered giggles and rolled our eyes at their conversation. We were enjoying hearing their grown up talk until they realized we were listening and told us to go and play.

Later that evening, we were walking down our street and discussing fair weather friends, what the word meant and if we knew any one who was like that to us.  We each had a list of people that we thought might be fair weather friends.  We began to put them into categories and name names!

There were the fair weather friends who hurt our feelings on purpose.

There were the fair weather friends who were not really our friends unless we were having a party.

There were fair weather friends who made fun of us one day and liked us the next day.

There were the fair weather friends that we kept hoping would like us and invite us to their house but they never did.

Then, there were the fair weather friends who just forgot to include us. They didn't mean any harm and usually apologized for the oversight.

 I have days when I get angry that Peggy is not there for me any longer. Days when I feel like she has bcome one of those fair weather friends.

I have days when I need her to listen to my life.

Days when I need her to be there for me again.

Days when the empty space that she left is as high as a mountain and deep as the sea.

I have days when I have to remember my promise to Peggy on that hot day in Alabama when we were girls.

I promised her that I would never be a fair weather friend and she promised me the same.

All of Peggys promises were taken away from her theday the Alzheimer's disease entered her mind and made her forget.

I remember two little girls who thought that they had forever as sisters.

Forever came to soon and I am the only one who remembers that day so long ago.The day we made promises and meant them with all of our young hearts. 

We just never realized that sometimes ..... promises are broken and cannot be kept.

The thought never entered our minds that ......

Forever would come so soon.

I Love You Today, Peggy!

I Miss You!

Mary Louise

 

Monday, June 12, 2006

HELLO

I was able to talk to Peggy last night.

She actually said hello! It was so good to hear her voice again though the conversation didn't last long. Her attention span is short and after hello, she didn't have anything else to say.

I told her that I loved her but I don't know if she heard it or even knew what it meant.

That doesn't matter. All that mattered was that I heard her voice and I got to tell her that I loved her.

I thought about the many times that I have said hello to people and not expected any further conversation. I say hello to people that I meet on the street or in stores. They do not know me and I do not know them. I do not expect them to have a long conversation with me about their life or their day.

It is just a greeting.

Peggy was kind enough to say a simple hello.

She doesn't know me and didn't expect anything further from me. When I told her that I loved her she put the phone down and was finished with the call.

I thought about all the people that I say hello to in a day.

I expected and wished for more with Peggy last night. I wanted more from her than a simple hello but she was talking to a stranger and to a stranger.............

 Hello is enough.

I Love You Today, Peggy!

Mary Louise

Monday, June 5, 2006

PARADE OF MEMORIES

A couple of weeks ago, I developed what the Doctor said is tinnitus. It is loud repetitive noises in both ears. It sounds like I have 100 sirens blaring in my head.

It is hard to think or do normal activities. I can mask the noise during the day when there are many distractions but at night it is unbearable and I get little sleep.

The nights are quiet and I cannot mask the noise even with a sound machine.

So during the darkness of nighttime, I think.

Last night, I decided that it is much easier to watch Peggy disappear during the day light hours because there are distractions.

At night, I am sitting with me and my thoughts. I decided last night at 3:30 am that I was not very good company to myself.

I felt nervous and was not kind in the words that I said to myself.

I was impatient and feeling sorry for me!

I felt all alone and at times, scared as the noises in my ears continued.

 I thought last night that it takes practice to be comfortable inside my head. To be comfortable when it is just me in the dark of the night.

I couldn't shut off my mind in the night as memories marched through my head like a parade on the 4th of July.

I noticed that every few minutes, I would get up and walk about the house....Every parade needs a drum major and I was way out in front of my memory parade.

I kept trying to turn the memories off by reading or writing but the parade continued through the rest of the night.

At one point, near dawn, I heard my thoughts say to me...What is wrong with you ML?

I sat down so frustrated while the noise kept ringing in my ears.

Then, it came to me....

What a privilege it was to have a night like last night. Sure, it was uncomfortable, lonely and long but......

I still have the ability to remember and  the privilege of having a parade of memories march through my head.

I am blessed because I can remember.

I have a gift that Peggy has lost.

You can not lead a parade if you have forgotten how to march.

 Peggy does not have any memories to march behind her in the day light or in the night time.

So my long night was exhausting but on the up side....

I was privileged to lead a parade!

I Love You Today, Peggy!

Mary Louise

 

 

 

 

 

Monday, May 29, 2006

MEMORIAL DAY REMEMBERING

This is Memorial Day.

A day to remember all those who are lost to us.

I am remembering Peggy.

I am remembering when this journey with her began years ago.

It began with frantic calls to say she had passed out, fell and hit her head.

It began with forgetting how to count money and calling to tell me how embarrassed she was.

It began with getting lost while driving her car and calling so that I could give her directions.

It began with losing jewelry and other treasured items and calling to ask about places to look for them.

It continued with calls to ask where the milk was kept when she was ready to eat cereal in the morning.

There are so many calls from her that I recall as she was sliding deeper into Alzheimer's disease.

Now, there are no calls from Peggy.

Now, she does not have the ability to ask questions.

Those calls were disturbing to me back then but.......

I remember and wish that my phone would ring today and Peggy would have a question for me.

A question that I could answer on this day of remembering.

But there are no calls from Peggy today or ever again and so....

I think of her and remember.

I Love You Today, Peggy!

Mary Louise

Tuesday, May 23, 2006

MEMORIAL WEEK

Our family went to a family reunion this weekend. It was for my husbands side of the family. Our children and grand children also made the trip.

It was good to see those we haven't seen for years and introduce them to our grown up children and grand children. After the lunch, we all went to the old grave yard where members of the family were buried.

We walked among the old grave stones and the older family members shared stories of those who were buried there.

Some of the grave stones were so old and worn that you could not read the inscriptions. No one remembered who they were or when they had lived.

Everyone could only share stories of those they remembered during their life time. The ones buried there who had touched their lives while they lived.

I walked among the grave stones and tried to read the names carved on the stones. One stone only said baby girl. I wondered why she was never given a name. Even if she was born dead or only lived a brief time, she deserved a name. I named the baby girl, Grace.

Who were the people whose stones had weathered and time had erased their names? What had  their lives meant to those who knew them? Had they been happy and had their lives touched someone for the better?

There were so many grave stones with names that no one in the family remembered.The memories of who they were and when they lived were buried with them.

It was as if...they were born, they lived their lives, they died and no one remembered the good or bad of who they were.

My mission in writing about Peggy is to educate about Alzheimer's disease and how it feels to watch someone you love disappear. To make sure that as many people as possible will get to know Peggy through my words.

My mission is that Peggy will be remembered for who she was and how she touched my life. I do not want her to be forgotten like so many of the people in the family grave yard.

Peggy will never be just a name on a grave stone because when you can teach people by living your life........

You will never be forgotten.

As long as I can remember Peggy....

She will continue to teach and I will continue to write the  lessons she is teaching me as I Watch her...Disappear.

I Love You Today, Peggy!

I will remember you always.

Mary Louise

 

Thursday, May 18, 2006

MISSING PEGGY TODAY

You would think that after all these years, I would  be accustomed to Peggy being absent from my daily life.

You would think that.

I think that I should think that.

 BUT......

Someone forgot to tell my heart!

Lisa Lorden wrote:

My sister is like no one else.

She's my most treasured friend, filling up the empty spaces, Healing the broken places.

She is my rock, my inspiration, though impossible to define.

In a word, she is...My Sister.

I Love You Today, Peggy and I will continue to miss you every day of my life!

Mary Louise

Sunday, May 14, 2006

HAPPY MOTHER'S DAY

HAPPY MOTHER'S DAY!              To all of the Mothers of human children and to all the Mothers of Animal children.                                            FROM PEGGY AND MARY LOUISE               

Saturday, May 13, 2006

I CANNOT STOP THE TRAIN

Peggy cannot talk to me on the phone any longer. I am losing the privilege of hearing her voice.  With that lost priviledge, I can no longer pretend on some level in my brain.

My layers of grief protection are being pealed away, one layer at a time.

Each time a layer of protection is removed, I have to re-adjust my thinking, my feelings and the grief of watching her disappear.

The disease gets more real to me every day as it cuts off any avenue that I had been using to reach my sister.

As Peggy slides farther and farther away and the realness of watching her disappear comes closer and closer at an alarming speed.

Alzheimer's disease is like watching a train fly down the tracks at increasing speeds, out of control and the horror that I feel is that........

There is no way that I can help or stop the Alzheimer's train from taking Peggy with it as it flies down the tracks.

All I can do is stand by the tracks and watch the speeding train pass.

As the Alzheimer's train roars past me.....

 I see Peggy in the window of the speeding train and I can only watch .....

As she disappears down the tracks.

I Love You Today Peggy!

And I grieve that I cannot stop the train that is taking you away!

Mary Louise

 

 

 

Tuesday, May 2, 2006

NO APOLOGIES...NO REGRET

Have you ever forgotten a special event, a persons birthday or an anniversary of someone close to you?

The event or special day passes and it never registers until days or weeks later.

All at once, you realize that you have forgotten to recognize someone close to you.

Do you remember what that felt like when you remembered?

Feelings of regret, shame and the apologies that always follow the forgotten date.

Then, dealing with ones own self abuse over the forgotten date.

How could I have forgotten such a special date? What is wrong with me? How can I make it up to the person who was hurt but my forgetting?

When a person has Alzheimer's disease...There is no regret, no shame, no apologies for forgotten important dates to family and friends.

There is only an erased mind who feels the moment.

One cannot feel regret about special days when they have vanished. When they no longer live in the memories that are stored in the brain.

I was the one who felt sad when Peggy forgot my birthday, not Peggy.

There is something good about an erased memory....

There are no regrets in forgetting.

Silences are real conversations between sisters.

Not needing to talk but already knowing what the heart of the other wishes it could say. 

I Love You Today, Peggy!

Mary Louise

 

Sunday, April 30, 2006

HAPPY BIRTHDAY TO ME

Today is my birthday.

All of my sister's and brother will call sometimes during the day to say or sing happy birthday to me.

I always enjoy their calls and I laugh at the different versions of the birthday song that they sing to me.

What has been noticeably missing for the past years is Peggy's voice.

That lilting voice singing or saying Happy Birthday, Mary Louise.

Birthdays were always special days while we were growing up. It was our own special day.

Even after we were grown, a happy birthday always came  across the telephone lines, in cards and with gifts.

Today is my birthday and...

Peggy voice still whispers in my memories.

I can still recall her saying...

Happy Birthday Mary Louise. If you didn't get your card and present today, you will get it tomorrow.

It isn't much. Just something that reminded me of you.

I love you!

Peggy.

I love you today, Peggy and I miss you on the day that I took my first breath.

I wander back to the day three years later, when I heard you cry  on your birth-day.

Time and distance has changed our lives but we will always be forever friends.  I will always miss you a little more on my birthday and on yours.

A birthday is a day to reflect and in my reflections...

There you are saying happy birthday to me!

I love you!

Mary Louise

Monday, April 24, 2006

PLEASE HOLD

I just made a call to a business.

Every minute, an automated voice would come on and say...

Please continue to hold. Your call will be answered.

I held the phone for 10 minutes listening to the message assault my ears every minute.

The message said to me..

We are here but we cannot talk to you. Finally, the message changed after another 5 minutes and said...Please,  leave your name, number and a brief message. Thank you for calling.

Then there was a dial tone.

All of that time holding and I never got through to a person

It made me think of calling Peggy.

She is there but cannot talk to me.

I can't leave a message for her to call me back.

She is there but she is not.

All I hear when I call Peggy is the hum of the dial tone as she drops the phone.

I can't get through to her ever again.

I could leave my name, number and a brief message but it would do no good.

She will never call me back.

Alzheimer's disease sensors all of her calls and makes sure that no one gets through.

I Love You Today, Peggy!

I miss talking to you on the phone.

I miss hearing your voice.

I miss you...........Not missing me.

Mary Louise

 

Wednesday, April 19, 2006

WORDS AND FEELINGS

Sometimes, when I try to put my feelings about Peggy on paper.......

The words will not come.

The words and feelings are running around in my mind but never make it to my fingers.

Sometimes, my feelings about watching my sister disappear want to stay inside of me and stay private.

Sometimes, I know that if I write what I am feeling.....

The tears will start and I won't be able to stop them. I fear that all my tears will wash me away.

Today is a day like that.

Today is a day when my feelings about Peggy are just mine.

To write them would be mingled will all of the sorrow of my life time. My feelings are all mixed up today. I wouldn't be able to separate which are about Peggy and which belong to another place in my heart.

I just know that my heart is full today.

Full of all the tears of a lifetime.

This is the kind of day that I would call Peggy on the phone and say...

Can you talk? She would always say, sure and the conversation would start. I could tell her what I was feeling and just knowing she was listening would make me feel better.

On a day like today...

I miss my sister, Peggy. I miss being able to share my tears with her. I miss her encouragement. I miss her voice.

I am missing my forever friend today and she doesn't even know.

One of the most hurtful feelings that I am dealing with today is that....

I know that where she is in this disease...

She doesn't even care.

I miss her caring and I miss Peggy. Especially today when my feelings are running around in my head and there is no Peggy on the other end of the phone line.

I Love You Today, Peggy!

I miss you Peggy.

Mary Louise

 

Sunday, April 16, 2006

NEW BEGINNINGS

Easter Sunday.

New beginnings.

A new start.

New buds on the trees.

Flowers struggling to raise their heads from the cold earth to feel the warmth of the sun.

Spring.

A new beginning.

Peggy's new beginnings ended when Alzheimer's disease destroyed her hope for spring and the privilege of beginning again.

Alzheimer's ended all things new for Peggy.

Today, I feel the new beginning in my life.

The sun is shining, flowers blooming, trees budding.

The air is warm with spring and the promises that spring will bring to my life.

For Peggy, there is no spring, no hope and no excitement about the promise of 2006.

Alzheimer's disease has ended the promise of spring and of renewed life for her.

Because....

Only those who remember can begin again!

I Love You Today, Peggy!

Happy Easter 2006

Mary Louise

Thursday, April 13, 2006

GIFTS FOR PEGGY

I sent Peggy a few gifts for Easter.

A book with pictures of babies because she always smiles now when she sees babies.

I sent her a little book about sisters. It was about sisters growing up. I put M.L. and P.J. next to the pictures of the little girls. It seemed the little book was written about us.

The last gift..I knew she would like.

I sent her rings,  bracelet, pin, necklaces and a few other pieces of inexpensive costume jewelry.

Peggy always had beautiful jewelry and loved to wear it.

Long before she went into the nursing home, her jewelry had to be removed and put away for her daughters.

When I would visit her she would spend time looking at her hands. She knew that she used to have rings on both hands.

Now, she has rings again and a bracelet to wear and other pieces.

It won't matter if they get lost or misplaced. At least she has them for now.

Her husband said she smiled when she saw the jewelry.

So much has been taken from Peggy.

So much more than the expensive jewelry that she used to wear.

But at least now...

She has jewelry to wear again and I am so happy that I made her smile.

I Love You Today, Peggy!

Happy Easter.

 Mary Louise

Monday, April 10, 2006

NO TURNING BACK

I watched a very touching movie on the Hallmark channel the other night.

The name of the movie was "Though none go with me" and it starred Cheryl Ladd.

She was recounting her life to her grand daughter one afternoon. At one point in the story of her life she told her grand daughter about her husband, Will.

After 50 years together, he began to drift into Alzheimer's disease.

One early morning  Will got up and wrote this letter to his wife.

( taken from the movie... Though none go with me).

Please don't be sad when I no longer recognize you.

Just know that I love you.

My heart will always remember even when my mind doesn't.

I want you to know that this will be the end of my life...Not yours.

I want you to go on and find happiness and know that every time you smile...I'm glad!

Love forever.

These words can also apply to any one who has suffered the loss of a loved one in any way.

These words came to me at the right time.  I have felt guilty that I am well and Peggy has Alzheimer's. I am been angry that Peggy has been taken from my life. I have felt frustrated that I had no power to stop her from leaving.

The words that Will wrote gave me great comfort because I can see Peggy writing the same words to her husband and daughters. Also to me and her other sisters and brother.

I can see any loved one who has passed away writing the same words to those they love. Loved ones who are left behind to deal with the empty places that are left by their going.

I have a little calendar on my desk that has sayings for every day.

Today the saying was.....I will not forget you. I will remember!

How chilling and comforting to read those words as I sat to type this entry.

It was as if Peggy is here with me telling me that it is OK to be happy and go on with my life and not be sad for her.

In the movie, the woman looked at her grand daughter with tears in her eyes and said;

I spent 50 years with your grand father but Oh what I would give for one more hour.

We can all say those words to the ones we loved and have left our physical lives.

Peggy and I touched one another's lives and we made a difference to each other but oh what I would give..........

For one more hour.

"Though no one goes with me still I will follow.

No turning back, no turning back".

I Love You Today, Peggy!

Mary Louise

 

 

Wednesday, April 5, 2006

FROZEN IN TIME

I talked with Peggy the other evening. I should say that I talked to her and she said "huh" in a small voice.

I wish that she could respond when I tell her that I love her but she cannot.

I was looking at some photographs of us the other day. Photographs that showed smiling faces and warm eyes.

In the photographs, we are frozen in time.

In Peggy's world, she is frozen in time.

Peggy does not know of September 11th or the war in Iraq.

She doesn't know of the sadness caused by Katrina or the other storms that blasted the Gulf.

She is frozen in a world of the moment.

Time means nothing to her and what is happening in the world does not touch her heart. 

Peggys world was frozen in time the day that Alzheimer's  covered her mind with the ice and snow of the disease.

Maybe, it is better for her to know no pain or sorrow.

Maybe, she is better off to have missed the sorrow of the past 5 years.

Could being frozen in time be a good place to be?

I don't think it is because when you miss the pain and sorrow, you also miss the joy and happiness that is always on the other side.

I have added a picture of us when we were frozen in time. The first day of Summer vacation from school.

A place of youth when we were cared for by our parents.

I look at us back then and know that we will always be frozen in that place in that photograph.

A carefree place that I can always visit in my memory.

I hurt that Alzheimer's disease has taken that privilege from Peggy.

She can never go back in her memory to the special places where we lived and laughed.

I feel sorrow for her but she doesn't share my sorrow because she is....

Frozen in time.

I Love You Today, Peggy!

Mary Louise