PLAYING PADDLEBALL WITH MY SISTER

Every Christmas, when I was a child, I would receive a paddle ball in my stocking. It was a paddle with a rubber band attached to it and a ball on the end of the rubber band.

I would paddle so hard to keep the ball bouncing from the paddle into the air. Peggy and I would play this game for hours. The trick was to keep the ball meeting the paddle.  Not an easy task to complete every time but we had such fun trying.

Peggy is like the ball on the end of the rubber band. She goes up and down from day to day.  I am never quite sure if I can keep the ball bouncing from my heart to hers.

I am never quite sure if the call that I make today will be the last time that I am able to bounce the ball from my heart to Peggy's ears.

 Peggy is the ball on the rubber band and she is attached to the paddle board.

The paddle board is the life that she had lived, the bouncing ball is the life that she lives today. 

She is being bounced up and down and the paddle is in the hands of Alzheimer's disease.

Today, I had the paddle in my hands for a second. I told her that I loved her today she said, I love you too!

At that instant, Alzheimer's took the paddle from my hand and continued it's game with her life bouncing her up and down and she was confused again.

For a second....

For just a second...

I held the paddle board in my hand and the ball that was Peggy came flying from the air and hit my paddle dead center by telling me that she loved me.

A small gift on a snowy, cold day.

I was able to playing paddle ball with my sister again. We both won and we both lost but we did play!

I Love You Today, Peggy!

Mary Louise.

 

THE SNOWBALL EFFECT

My grief over watching Peggy disappear is huge but I am also aware that it is made bigger because of unresolved grief from my past.

Grief that I stuffed down and refused to deal with at the time.

Grief that I didn't want to think about, much less go there to sort out.

I think that grief has a way of building up if it is not dealt with at the time it occurs.

If the grief of a life time is still roaming around somewhere inside of us, unresolved, it re-emerges when faced with a present grief.

I am very aware that I am not only watching Peggy disappear but re visiting the grief's of my lifetime.

Unresolved grief is like a tiny snowball  that starts rolling down a hill and increasing in size as it rolls.

When the giant snowball of grief from the past meets a stationary time of grieving in the present, it explodes all over the present grief and becomes a part of it.

 Then, it is difficult to separate the grief from the past and the grief of today.

It all mixes forming a solid ice ball that will take time to thaw.

 The thaw will come to my heart and then my grief will become a flowing river. A river that is always present but never damned up to form a lake that could freeze in winter.

We all experience grief during our lives, if we didn't.... how could we understand what joy is like!!!  

I have heard it said that there can never be two mountains without a valley. If there were no valley's...how could we ever climb to the mountain top!

I have had the joy of a sister that I love and the grief of watching her disappear but..........

 I am a stronger person because of making this difficult journey through the ice and snow of Alzheimer's disease.

I Love You Today, Peggy!

Mary Louise

THE CHESS GAME

Peggy continues to surprise me.

For several weeks, she would not talk with me. She would lay the phone down and walk away.

That is what I was expecting today but instead she talked. I told her that I loved her today and she replied, OK.

I said, Peggy, you do know that I love you and think of you every day, don't you?

Yes, she said.

That is all I wanted to say to her today.

That is all I wanted her to hear today. 

Alzheimer's disease takes the people we love away and then, out of nowhere, gives them back for a few seconds.

It is a game of Chess with a monster...Now you see me...Now you don't!

I never know what to expect when I call Peggy because Alzheimer's sets the rules of the chess game and changes them at will.

Today, I heard her voice.

Tomorrow, maybe not.

Alzheimer's may be in control of this chess game but I will never stop playing and trying to win.

I won today because I heard Peggy's voice and she heard mine.

Game....Mary Louise!!!        

Tomorrow the rules will change again and I will play the game again.

I will play the game until Alzheimer's folds the game board and takes the pieces that are left of Peggy and declares....

Game Over!

I Love You Today, Peggy!

Mary Louise

THE TIME HAS COME

Peggy saw her Doctor last week. I received the news, last evening that she has reached the stage of Alzheimer's disease where she will need nursing home care.

I knew it was coming and I knew she was worse but it was easy to pretend.

I thought that I had cried every tear in my body over losing Peggy. Surprise...There was a under ground spring that rose to the surface last evening when I heard the news.

The day has arrived when Peggy's husband will have to make the decision of his life. The decision to put Peggy into a nursing facility.

He is struggling with what to do and when to do it.

He has been a rock for Peggy. He is still a young man and this is a decision that he never thought that he would have to make.

I tried to put myself in his place and thought about what it would be like if I were making this decision about my husband. The pain was very real as I went through the thought process of thinking about losing my husband. Making the decision to take him out of our home and put him into a Nursing facility

I cried, thinking of the empty place that putting him in a nursing home would bring to my life.

I also felt a sense of relief that the constant, 24 hour would be in the hands of others. But there was also a feeling of intense loneliness that crept into my heart.

I felt so many emotions that I was relieved when I could pull back from the pain and know that I did not have to make this decision about my husband, my life.

I support my brother-in-law in this decision and when he thinks that it is the right time. I know that Peggy would also support this decision.

Please keep him in your prayers as he makes the decision of a lifetime. The decision that he can no longer care for Peggy the way that she needs to be taken care of. That he can no longer keep her with him...at home.

The decision to...let go.

I knew the day was getting close when Peggy wouldn't talk or listen to me when I called her. She would just lay the phone down.

My voice was no longer helping her because she is living in a world of strangers.

My voice was not reaching her on any level because she had forgotten my voice and that we are sisters.

My heart is breaking as I write this morning because it has finally reached my heart that Peggy has begun her final disappearance from my life

 I knew this daywas coming but now that it is arriving...I feel blind sided.

It was easy to pretend, to think that my calls were helping her to stay, to stay a little longer.

Some of my grief is the realization that I am not as powerful as I thought that I was in Peggy's life.

I wanted to save her, to be the one who was able to get through to her.

This morning, in my grief.......I have come face to face with me.

A me that is not powerful at all but just a sister who can do nothing but...

Watch My Sister...Disappear for good.

I Love You, Peggy and will continue to write about you and what this grief feels like as you continue to disappear.

I hope that you know on some level, that you have helped a lot of people because of your story.

My Sister, My forever Friend...I Love You Today and Always!

It is true that you are disappearing from this world but never from the hearts who have known and loved you along the short way called.....Your life.

I received this message in a e-mail this morning and have adapted it to fit Peggy......

When Peggy came into this world she was crying......and everyone else around her was smiling.

As she continues to disappear from this world...She is smiling and everyone else around her is crying!

I Love You Today, Peggy!

Mary Louise

PEGGY'S SONG

Peggy and I have always loved music.

I heard this piece of music many times before Peggy got sick. It was pinned by Liszt somewhere between 1849 and 1850.

E Major Un poco piu mosso is played in this journal by a man named Ross Rahn.

I heard it again the other day and the melody haunted me. I couldn't figure out why so I played it over and over.

I was driving the other day and played the music again and as I listened, I realized that this piano piece represented to me, the essence of Peggy's life!

This music that was written so long ago, represents Peggy's life to me.

The first part of the piece is her birth, childhood, teen years and the first part of her 20's.  

The middle of the musical piece, when the fingers play stronger and the music is louder is when Peggy entered her late 20's, 30's and 40's. She was healthy and strong. She was caring and involved with life. She was a tennis singles champion and played a great game of golf. She volunteered and taught under privileged children how to read. She was a mother to two daughters. She was a corporate wife and entertained in her home. She was alive in the middle of her life as the music indicates.

Then, the music changes key and slows down towards the end of the piece. That is when she was in her late 40's and Alzheimer's disease entered her mind.

Listening to the last of this beautiful piece, the music slowly fades away......

Just like Peggy.

I hope you will listen to this beautiful music and think of Peggy.

The beauty of music.... my heart hears and understands.

This piano piece is...My Sister, Peggy.

I Love You today, Peggy!

Mary Louise

You may need to copy and paste the address in your browser to listen or click on the address and open the song.

http://www.members.aol.com/mlrhjeh/peggyssong.wma

Roxio

OR

http://www.members.aol.com/mlrhjeh/peggyssong.midi

in Windows Media Player

WHAT A DIFFERENCE A YEAR MAKES

Peggy had a birthday yesterday.

I called her and when she said hello, I broke into the birthday song. About halfway through my Happy Birthday to You, her husband's voice came on the phone and he said that Peggy had laid the phone down.

He thinks that phone calls confuse her now. He also said that Peggy thinks that it is a recording or maybe, she is confused by the words. It is as if I am speaking a language that she cannot understand.

He called her back to the phone and when she said hello, I asked her if she would like for me to sing to her again. She said yes and I sang happy birthday to her. This time, when I finished the song she said, Thank you. But the thank you was with a cool tone.

She then laid the phone down and walked away before I could say anything else.

After I hung up the phone, I just sat there looking at the phone in my hand. My mind wandered back to last year and the birthday call to her.

Last year, she laughed and sang with me.

Yesterday, she couldn't even hold the phone.

Yesterday, I felt these things in her voice.......

Birthday?

Song?

Who are you?

Why are you singing?

What is a birthday?

I also felt from her voice....irritation that said,

Leave me alone.

What a difference a year makes with Alzheimer's disease.What a difference in the sister that I love and remember.

Our relationship is one sided now but I know that if Peggy could make it different...she would.

Alzheimer's is like a thief that comes in the night and steals all birthdays and remembrances of birthdays. It has torn her birthday memories into tiny pieces and thrown them to the wind.

I stand in my remembrances of Peggy's birthday's and look toward the sky just in time to see the tiny pieces of her birthdays, past and present floating, twisting and turning in the wind and finally disappearing.

I still see Peggy....

But she doesn't see me. 

It is OK because.....

Peggy will always be locked inside of my heart and .......

I have Lost the key!                      

 

Happy Birthday, Peggy!

I Love You Today and always!

Mary Louise

 

A PENNY FOR YOUR THOUGHTS

I wonder what Peggy thinks about every day? I wonder if she thinks at all.

I asked her today if she ever thinks about Mother and Daddy and she said, yes.

I asked her if she ever thinks about when we were little and she said, yes.

I asked her if she thinks about Betty Jean, Barbara and Johnny and she said, yes.

I asked if she knew who Mary Louise was and she said, yes.

Everything was a yes.

I was not sure if she understood what I was asking or what she was saying yes too, so I said, Do you think about the ground?

Her answer was......Yes.

I would like to understand what a day is like inside of Peggy's mind.

What does she see when she looks out of her eyes?

Is she able to think and process her thoughts?

I wonder if everything she sees is a mystery to her. I wonder if she can put a name to the objects around her.  Objects like a book, a lamp, a blanket or a flower. I wonder if she knows what food is when she eats?

I wonder if her mind has become a blank sheet of paper or are some of her memories still written there?

What do her thought processes write on her mind as she sees her world? What does she think when she watches television or hears music on the radio?

When I visited with her, she would watch the television screen but I couldn't tell if she knew what she was seeing. One of the major things that I noticed was that she would never look me in the face. She would never make eye contact with me. Her face had a blank look but it also had a serene look. A look like nothing bothered her, nothing frightened her and also like nothing meant anything to her.

She just was.......

I wonder what it would be like to....disremember every single part of your life?

I think of our minds as a chalkboard and we write on it from the time of our birth. When we reach adulthood, we have written many thoughts and memories on the chalkboard of our mind.

I think of Alzheimer's disease as a giant chalkboard eraser. It enters a mind and starts the process of erasing the memories, feelings and information that is stored there.

It wipes the chalkboard of our mind clean of all that has been written there.  It continues to erase until there are only faint marks left on a person's mind. A mind that is still alive but cannot  read, recall or function as a adult.

Alzheimer's disease takes an intelligent, competent adult back in time to the existence of a baby.  It erases thoughts, memories and the ability to do even minor tasks that we all take for granted.

Tasks like combing your hair, brushing your teeth, putting on your clothes or going to the bathroom. It takes your mind back to the time when you were totally dependent. Totally dependent on those who love you to take care of you. 

Alzheimer's disease erases your mind until it has made you a tiny baby in a adult body.

The disease will progress to a time when Peggy will forget how to chew and swallow and then finally.....forget how to breathe.                   

There was a time in the beginning of the disease that Peggy was afraid. She would talk with me and I could hear the fear in her voice. She didn't know what was wrong with her and neither did her doctors. 

I am thankful that Alzheimer's has erased the fear that I heard in her voice in the beginning. I am angry that it has also erased who she was and who she could be.

Now, Peggy just sits and waits with a calm demeanor for Alzheimer's to finish the job of erasing her mind. She waits for it to finish what it started in her mind 4 years ago.

Peggy will continue to sit and wait for the final swipe of the eraser. The final swipe when she will be erased from this world forever.     

Alzheimer's disease will erase her from....... herself.

But Peggy will never be erased from the hearts of those who love her!

I Love You Today, Peggy!

Mary Louise

 

A PUZZLE CALLED PEGGY

I hung up the phone after talking to Peggy today and realized that there is no way that I could ever quit calling her.

It is difficult to carry on a one way conversation but to hear her say OK or yeah is enough. At least, I can still hear her voice.

This is the week of hearts and my heart is full.

It is full of thankfulness that Peggy still has a voice. She may not be able to remember words, carry on a conversation or even remember who I am but her voice is still the same. That sameness is a comfort to me.

When my sisters, brother and I grew up and went our different ways, my Mother used to say that pieces of her heart was in five different places.

Now that I am grown, I understand what she meant by that statement.

A part of my heart will always be with Peggy and hearing her voice  will have to be enough.

There will come a day when I won't even have that small part of my sister. So, I will enjoy the time that we have left.

I know that there will be other days in the future when I will get down and want to give up but I won't because........Peggy still tries and so will I as long as she is alive.

Calling Peggy every day is like trying to put a puzzle together.

I separate the pieces and start the process of putting the puzzle together.

It can get frustrating trying to find the right puzzle piece to fit in the right place. But I can never give up on a puzzle that I have started.

I keep plodding along and slowly the picture comes together and I can see what I have been trying so hard to do.

Once I have finished a puzzle, I look at the finished work. I admire the picture and jumble the puzzle pieces. I put the puzzle away to put it together again at some time in the future.

Peggy is like a puzzle that Alzheimer's is slowly taking apart. She was a beautiful picture once and now, large parts of the puzzle that was Peggy have been taken away. Many pieces of her puzzle picture is missing now.

The puzzle that was Peggy can never be put together again. Alzheimer's disease has taken the pieces and thrown them away.

Every day, thisdisease takes one more piece of the life that was my sister and destroys it.

No one, not even those who love her so much can put her together again.

We can only watch as parts of her life and memory disappear from the puzzle table each and every day.

Alzheimer's disease is taking Peggy apart one piece at a time and will continue until the beautiful puzzle called Peggy is gone forever.

I Love You Today, Peggy!

Mary Louise

FINDING THE RIGHT WORDS

I called Peggy today and must admit that I was relieved when the voice mail message came on.

I left her a message and told her that I loved her today.

I'm not sure how much longer she will be able to take my calls. She is slipping away a little more each day.

It is stressful to try and find the right words to say to her. She cannot carry on any type of conservation any longer. I  now worry that I am causing her more stress by trying to make her talk to me.

Talking to Peggy now is like trying to catch water in my hands. The harder I try to hold on to her, the faster she is slipping through my hands.

Notice I said, talking TO Peggy as apposed to talking With Peggy.

 I feel as though I am talking to a brick wall now and the echoes of my own voice are bouncing back to me.

I must make a decision soon about my calls to her. Is it causing more stress than it is helping her?

I am in a low place today and not sure which way to go or what to try next.

I know that I cannot bring her back and maybe, it is time to let her go.

I don't think that she would miss me or my calls at all. In fact, I know that she wouldn't.

Why should she....Because.........

How do you carry on a conservation with a stranger?

How do you carry on any type of conservation with someone who doesn't have the slightest idea of who you are?

There is a point where words are not enough and I wonder if I have reached that point with Peggy.

I really thought that if anyone could make a difference in her life that it would be me. I was mistaken because my sister doesn't remember who I am or why I call her every day.

Just feeling sorry for myself today.....sorry that I can only Watch as....

My Sister...Disappears.

I Love You Today, Peggy

Mary Louise

THE BIRTHDAY CARD

Peggy is having a birthday on February 13th.

I spent almost an hour in a card shop trying to find an appropriate  birthday card to send to her.

I read many cards and wiped the tears away as they pooled in my eyes. I noticed that people were looking at me but no one approached or asked me what was wrong. I felt foolish as I read the cards and cried but my tears had a mind of their own.

What kind of a birthday card does one buy for a sister that doesn't remember that we are sisters. What kind of a birthday card does one buy for a sister who doesn't remember what a birthday is any longer?

All of the cards said things like....

Sister, do you remember when we were little and had so much fun? 

or......

I'd like to talk on your special day and laugh like we used to do.

or...

I'm glad that we are sisters and still share so much.

~~~~~~~~~~~~~~~~~~~

I read the cards and replaced each of them and then picked up another card to read.  

There were no cards that I felt were appropriate for Peggy.

I found myself getting a little cynical and thought of a card line for loved ones who are dying.

Cards that would say...

So sorry that you are dying but have a Happy Birthday anyway. 

or...

Happy Birthday, I wish you remembered what a birthday is but have a ball on your day!

Have a happy birthday even though you have forgotten that I am your sister.

Happy Birthday from your sister, I wish you remembered what a sister is but since you don't... Have a great day anyway! 

Birthday wishes from the stranger that calls you every day.

Sorry that you don't remember your life but celebrate your birthday in style!

Too bad that you have Alzheimer's disease but hope you have a Great Birthday anyway!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

Thinking those thoughts was the only way that I could deal with the sweetness of all the sister cards that I read.

I would cry reading a card and then think of what the card might say if it were my new line of "sorry your dying" cards.  I couldn't help but smile when I would think of what a card might say from my cynical card line. 

I realize that it was just a way to deal with the grief that I was feeling while reading the birthday cards for sisters.

I know that the people in the card shop thought I had gone a little over the edge. Actually, I was holding on to the edge with my fingernails.

What was interesting is that no one, in the hour that I was there reached out to me. Every one went about their business while tears ran down my face. It would have felt wonderful if someone had cared enough to ask about my tears. I think that most people didn't want to interrupt me or just didn't know what to say.

If you are ever in a card shop and see someone crying while reading cards. Please take the time to say hello. You don't need to say anything brillant......just hand them a kleenex and ask if they need anything. Chances are that they will say, no but your taking the time to reach out to them will help more than you know.

I wasn't alright while I tried to find a birthday card to send to my sister who continues to disappear from my life.

I did finally find a card for Peggy that read.......

HAPPY BIRTHDAY TO MY WONDERFUL SISTER.

Sometimes it takes years to understand what having a sister is all about.

When we were younger, you were  "just my little sister".

But now, I truly appreciate the special person you are...

And I realize just how much having you for a sister means to me.

WITH LOVE ON YOUR SPECIAL DAY!

It makes me sad that Peggy will not understand what the card says or that it is from me but.....

Happy Birthday, Peggy.

I hope that next year I will still get the chance to buy you another card. I hope that I will have another birthday to celebrate for you.

I remember, Peggy. Yes, I remember.

I remember the day you were born and I remember your birthday's.  I remember so many of your birthdays with smiles, birthday cakes, candles and fun.

I am sad that you have forgotten your birthday but I remember and...

That's what a big sister does.....

She remembers for you when you have forgotten.

Peggy, I know that chance made us sisters but our hearts made us friends and I miss you, my friend.

So happy birthday to my forever friend from your sister.

A sister that will always remember..... for you.

I Love You Today!

Mary Louise

 

 

THE TUBE OF TOOTHPASTE

I talked with Peggy today. If I asked her a question or made a statement all she would say was, Huh?

It was as if she had trouble hearing what I was saying. The volume of her life is being turned lower and lower.

Have you ever used a tube of toothpaste until it is nearly gone? You take your fingers and flatten out the tube and press from the bottom of the tube to the top to get a little more toothpaste to brush your teeth.

If you don't get enough doing that, you start rolling the tube from the bottom. Slowly some tooth paste appears and you can brush your teeth.

The next time you need to brush your teeth, you do the rolling thing again but this time after rolling the tube you bend it from side to side until a little tooth paste rises to the top.

The next time you reach for the toothpaste, you roll the tube from side to side and when that doesn't work, you stick your toothbrush down into the opening of the tube and get just enough toothpaste to brush one last time.

That is what it is like trying to talk with Peggy now.

She is like the empty tube of toothpaste. You can see just a little of her but there is no way to get anything out of her. No way to communicate and no way to have a conversation with her.

It has been like that all week. Her tube of life is used up and she has nothing much left to give.

I think she is entering another phase of the disease and is slipping further away.

I  really thought that if I keep calling and reminding her that I love her that it will help.

I am losing that hope.

Peggy is dying and I can do nothing but try and get a little life from her every day. I keep rolling and pressing the tube that was Peggy to get any kind of a response and now, nothing is coming out.

Alzheimer's disease has taken a knife and cut off the bottom of the tube that was Peggy and all of who she was and who she could be has run out the bottom of the tube and is gone forever.

I love You Today, Peggy and I miss you!

Mary Louise

THE FERRIS WHEEL

Wouldn't it be wonderful if we could schedule our grief.

If we could schedule our grief for 30 minutes in the morning and 30 minutes in the evening.  The rest of our day and night would be grief free. Free from the realization that we are losing or have lost someone that we love.

The 30 minute grief time in the morning could contain all of our tears and sadness and when the 30 minutes were over...smiles and happy thoughts would cover our minds until the grief time would arrive again in the evening.

Unfortunately, grief does not work that way. Grief stays with us as we live the minutes of our day and as we dream our dreams at night.

Grief is like a Ferris wheel that comes around over and over. We ride in the Ferris wheel car and go around and around. We ride the car up and ride the car down as we experience our grief.

The grief Ferris wheel never stops but.........

When we are on the top of the giant grief wheel and can see a past that was filled with fun, laughter and care......

We can finally look forward and be at peace.

The ride with Peggy has been good and I grieve that it is going to be over but as I look forward from my seat at the top of the Ferris wheel, I can also look back and.......

I can shout to the top of my lungs...

Wow, Peggy....

What a ride!!!

I Love You Today, Peggy!

Mary Louise