TOUCHING THE CLOUDS

Peggy was quiet this morning and had the voice of the little girl that she was so long ago.

After I hung up the phone, I thought about Harrison Park in West End.

I have not thought of that park in many, many years.

It was a park that was close to our home. Peggy and I would walk there in the summer time to play and swing. Sometimes we would stay all day.

Our Mother always made us wear shoes when we walked to the park but we would take them off as soon as we reached the swings.

The swings were giant steel structures with faded boards for seats.

The chains that held the swings had rusted with use and also  because of the hot summer weather in Alabama.

Peggy and I would pull off our shoes and socks and run for the swings. She always had trouble getting her swing started so I would stand behind her and push as hard as I could.

Soon, we were both flying through the summer day. We swung so hard and so high that the rush of the hot summer wind in our faces would take our breath away.

We would swing so high that the chains on the swings would jerk when we would swing forward.

We always leaned back when we would swing backward to give us greater height as we swung forward again.

On days when we were particular brave, we would take a deep breath and jump out of the swing when it would go forward. We usually landed in a heap on the ground but we were very proud of our bravery.

Our favorite thing to do was to swing as high as we could so that we could...

Touch the clouds with our toes.

We had declared that touching the clouds with our toes was very good luck. We spent hours swinging and touching our toes to the white fluffy clouds as they floated by on the hot summer days in Alabama.  The days of our girlhood when we were young, brave and strong and knew in our hearts that a cloud on our toe could change everything.

 This morning, the little girl in me wanted to take Peggy back to Harrison Park.

I wanted to take her back to the swing set with the faded wooden seats. I wanted to give her a giant push so that she could touch the clouds with her toes.

The little girl in me is certain that if I could take Peggy back to Harrison Park and she could touch the clouds with her toes...one more time...

She would be well again.

I Love You Today, Peggy!

Mary Louise

BAGGAGE

I asked Peggy this morning if there was anything that she wanted to talk about. She said, yes but couldn't think of anything to say.

The memories of her mind are gone and that is what we draw on to communicate with one another.

A person cannot talk about something that they can't remember.

I wonder if Peggy is lonely because she was such a "people person".

My heart tells me that she has to be lonely because I miss her so much but my mind tells me that she is alone.... but not lonely.

One cannot be lonely for people, places and things that are not remembered.

Peggy lives in a world called "the Alzheimer's moment". She seems to be aware of what happens in that moment and then it is gone forever.

It might be wonderful to live in the moment. If we did, we would forget the hurts of a year, day, hour or the minute before that moment. But...we would also forget the joys of the same time frame.

We move forward through time taking all of the baggage from our memories. The baggage that we drag as we travel, dictates how we react to situations.

If we traveled through life with no memories of the past, no fear of the future and only lived in a moment of time....... 

It might mean that we were living with a disease that cripples the mind. A disease that takes away our past, limits our present and destroys the hope of a future.

It might mean that we were living with...

Alzheimer's Disease.

Alzheimer's disease takes away the past, eliminates the future and places a person in the moment. Once a person is living in that Alzheimer's moment there is never a need to check baggage or to remember baggage.

Once a person lives in the Alzheimer's moment there is never a need to think, plan and or to get excited about the trip through life.

Peggy lives from moment to moment, experience to experience and then it is forgotten.

The baggage that she carried through her life experiences have been lost and will never to be returned to her.

Peggy does not need the suitcase of her memories because she lives in the Alzheimer's moment where travel is limited.

Alzheimer's has locked all of Peggy's memory baggage in a place where the key is missing and the sign on the door reads....

WARNING!!!!!!

This room contains the suitcases that hold all of Peggy's memories. It is under lock and key and can never be claimed.

Signed......

Alzheimer's Disease.

I Love You today, Peggy!

Mary Louise

MEMORIES OF HOME

Remember The Magic in Our Lives!  

SO MUCH OF WHAT WE LEARN OF LOVE...WE LEARN AT HOME!

Remember the Times,Remember the Magic, Remember the Magic in our Lives!!!

1805 St. Charles Court....Playing dress-up...dolls...Rock School...

Old Maids...Vacation Bible School...Christmas...Micro Midget Track..

Jump Ball..I See Something...Hop Scotch...Jump Rope...Strut Miss Lizzie...

Kick The Can...Making clover chains...Putting on Plays...Red Rover...

Digging for Doddle Bugs...Roller Skating... going barefoot all summer...

5 children sharing ONE bathroom successfully...Making up songs...

Dodge Ball..I Spy..Mickey Mouse Club...Ain't No Bugger Bears Out Tonight...

Walking around and counting the number of whistles we got....Bible Drills at G A's....

Cheerleading...Twirling the baton...Beauty Pagents...Talking on the phone...The light on the front porch clicking on and off while sitting in a car with a boy friend ( meaning...come in the house).

sharing a bedroom...Sneaking clothes from Betty Jean's closet...

Going on Dates...sharing clothes...sharing dreams...singing in the kitchen...

Going to Proms..Fixing our hair..putting on make-up..spinning on pot lids in the living room.

Calling boy friends for one another..Roller skating on Mrs Farmer's Hill.

Brother Williams..Berney Points Baptist Church...Bus, 3 West End..

Across the Alley Girlfriends... Football Games & Yelling until we were hoarse..

Tossing eggs in a circle..Crying together when we lost a love...driving lessons...

Alabama Football Games...Sliding in the mud in the front yard...

Digging Fox Holes in the back Yard...Prom gowns...Wedding gowns...

Sister's Weeks....Christmas' at home...Going to Montgomery...Lemons..

Lee School..West End & Fairfield High Schools....West End Theatre.

Panama City..The Big 10...West End Lions..5 Points West..The Fire Tower..

Green Springs Park... The Church Yard...Joe's Store...Cherry Cokes...

John, Ricky and Ray....

Dwight, Jack, Tommy, Johnny & Dan....Carol, Judy, Joy.

So many wonderful memories, Peggy... I will keep all of them safe for you!

I love you Today, Peggy...I miss you!

Mary Louise

LOST~~~~~~~~

(LOST:  adj. ruined; destroyed; not to be found; missing; no longer held, seen or heard, having wandered astray; wasted).

Peggy is not the only one who is lost in this journey called Alzheimer's disease.

Our whole family feels lost.

We are all lost as we try to find our way through the darkness of this disease.

I had Encephalitis once. It is an inflammation of the brain usually caused by the bite of a flea or mosquito. I was lost for almost a year and fought my way back from that brain virus. I fought my way back because I knew that... I was lost.

I remember a day, several months after I returned home from the hospital.  I took chicken breasts out of the refrigerator to fix for my family. It was a task that I had done many times. I laid the chicken on a plate and I couldn't remember what to do with it. I just stared at it and tried to remember what to do. I was lost and afraid because I knew that I couldn't remember how to prepare the chicken.

Another incident happened when I drove to a familiar shopping center. After I had finished shopping and returned to my car, I  couldn't remember how to get home. It was another frightening experience and another time when I felt completely lost.

The difference in my lost and Peggy's lost is that I Knew that I was lost...Peggy doesn't remember...Lost!

Some of my memories were lost forever because of Encephalitis but that is OK because I don't worry about a memory that I can't recall.

That is a comfort because I understand that Peggy doesn't worry about her lost memory. She can't worry about memories that are no longer in her brain.

To this day, I have never forgotten what it felt like to be lost and to know that I was lost. 

I think that lost is a lonely word. It is a lonely word that loses it's meaning to an Alzheimer's patient but is huge  word to the ones who are still try to find... the Peggy that we knew.

Peggy is and will continue to be lost but she has forgotten to be afraid like I was when I had Encephalitis.

We are the ones who are frightened as we watch Peggy disappear because ...

We Remember.... while she has forgotten.

If you ever find yourself in a place where you are lost and you know that you are lost...

Be thankful....

Because you can find your way back home if you remember.

Peggy is lost, really lost and she doesn't remember that she is lost. She has no way of finding her way back home. She has no way to ask for help or directions. She has no way to be O K again because she has forgotten. She is lost and has forgotten to remember what lost means. 

When we experience a situation that turns our world upside down it can make us afraid and we can feel lost.

No matter what we face or how lost we feel, if we are aware that we are lost, we can ask for help and find our way through the darkness of any situation.

Alzheimer's disease has taken that privilege away from Peggy. She is lost but doesn't know it and she has no way to ask for help to find her way back home.

To remember is to know that help is always there.

We just have to ask for help and the darkness in our lives can turn into light.

We are empowered because.... We remember.

Peggy's power has been taken away because she cannot remember.

She cannot remember that she is lost.

But we remember and we all keep trying to find her every day.

It is good to remember what it feels like to be lost and to know that feeling temporarily lost does not mean that we can never find our way home.

We can find our way home again if....... We can Remember.

I Love You Today, Peggy!

Mary Louise

SLEEP

Peggy's voice sounded very small this morning and she was whispering her responses to me. 

 I felt helpless and tried to get her to tell me what was wrong but she couldn't. I asked her if she wanted to tell me something and she said, yes. I asked her what she wanted to tell me and she said, I don't know.

I told her that I wanted to help her and she said, I know.

Can I do anything to help you and her reply was... No.

I told her that I would do anything to help her and she said, I know.

I asked her if she was alright and she said, No.

It is as if her mind is going to sleep but she is trying hard to stay awake.

Alzheimer's is putting her brain to sleep and there is nothing that I can do or say that will help her stay awake.

The call was frustrating and I could hear in her soft whisper that she wanted me to do something to help her.

All I could do this morning was tell her that I loved her today and that I would call her tomorrow. She said.....good.

Peggy's mind is being put to sleep. Her eyes are open but her brain is becoming dormant.

I wonder what a day and night would be like with Alzheimer's disease? I wonder if Peggy has dreams at night or is the night as dark and quiet as the day?

Either way....Peggy's brain is going to sleep and there is nothing that I can do to help her stay awake but call her and wisper that I love her as she slips further into sleep.

SLEEP........by Eric Whitacre ( liberties taken)

The evening hangs beneath the moon. A silver thread on darkened dune.

With closing eyes and resting head... Peggy knows that sleep is coming soon.

Upon her pillow, safe in bed a thousand pictures fill her head.

She cannot sleep, her mind's a-flight and yet her limbs seem made of lead.

If there are noises in the night, A frightening shadow, flickering light.....

Then, She surrenders onto sleep. Where clouds of dreams give second sight.

What dreams may come both dark and deep of flying wings and soaring leap.

As she surrender onto sleep....

As she surrender onto sleep....

As she surrender onto sleep...

SLEEP...

            SLEEP...

                           SLEE....

                                          SLE.....

                                                       SL...........

                                                                        S...............

I Love You Today, Peggy and I will stay close as you continue to fall asleep.....

Mary Louise

 

THE POWER IS BEING TURNED OFF IN PEGGY'S MIND

My sisters, Betty Jean and Barbara visited with Peggy on Saturday.

They called me to tell me about the day. They said that Peggy didn't seem to know who they were.

Betty Jean said that Peggy smiled when she saw her. Barbara said that Peggy became stiff when she hugged her and froze up when she tried to talk with her.

They were not sure why there was such a difference.

They also said that Peggy tried to join the conversation while they were talking by nodding her head and using yes and O K.  She is still trying hard and hoping that no one sees that she is different.

I wonder what she thought when she saw her sisters?  Sisters that have been a part of her life since she was born.                         I guess we will never know.

It brings to mind the saying "the lights are on but no one is home".

The power source that lit Peggy's mind and body is being turned off, one brain line circuit at a time.

There are times when the power that runs to my home is interrupted and the house will go dark.

It is a frustrating feeling as I look for candles and flash lights to light my way through the darkness of my house.

The normal things that I do every day are interrupted.  I cannot plug anything into an outlet and have it work.

The television is black, the kitchen appliances won't work and anything that takes power from the lines that run my house are useless.

Sometimes, the power will try to come back on and there will be a flicker of light for a second and then the house will go dark again.

I am aware, when the power is absent,  how very quiet the house becomes. There is no humming from appliances or sounds from radios or televisions. There is only quiet.

This is what I think having Alzheimer's disease would be like on a daily basis.

The power that runs to the brain is interrupted. There is in a sense, a power black out, an interruption of power to run the brain and to run the body.

There are times when there is a power surge and the lights in Peggy's brain will flicker with recognition. It does not last and the power is shut down again leaving darkness and quietness in her brain.

Alzheimer's disease interrupts the power that runs to the brain and the power lines that connect the brain lie jumbled on the ground. 

It is not our fault when the power that runs our home is shut down and it is not Peggy's fault that the power that runs her brain is broken and tangled, lying on the ground.

Peggy's power source is Alzheimer's disease now and it provides and shuts down the power that runs her brain. It also shuts down the brain circuits at will.

To live with Alzheimer's disease is to live with a faulty power company. A power company that will not send trucks to restore the power to her brain when the power is interrupted.

To watch my sister live with Alzheimer's disease is like standing on the outside of her house in the freezing cold, knowing that the power to her brain is being shut down. Standing there in her darkness and living with the knowledge that I cannot bring candles or flash lights into her brain to light her way. I can only watch as the light that was Peggy goes dark.

To watch my sister's life go dark from Alzheimer's disease is knowing that I cannot find my way through her darkness to brightened her mind.

To watch my sister disappear from Alzheimer's disease is watching the lights in her brain flicker and go out one at a time.

In real life, we can purchase a generator to light our homes when the power goes off.

In the life of an Alzheimer's patient...

Generators are not permitted.

So, I watch Peggy's lights flicker and die and I can appreciate the lights while they are still flickering. Never knowing when the lights will go out for good.

I am thankful that I can still see the flickering lights as I continue to watch Peggy disappear.

I know that the day is fast approaching when her lights inside of her brain will go dark and the light that was Peggy will be a memory.

Alzheimer's is winning and shutting down the power to Peggy's brain but...

Until the day that her light goes out for good....

I will keep my fashlight and candles handy...Just in case she has a power surge and remembers who I am one day when I call and say, Hey, Peggy...This is Mary Louise and she says....I Know! 

I Love You Today, Peggy!

Mary Louise

I'LL HELP YOU CRY

I heard a song last night that touched a place in my heart.

It was sung by Larnelle Harris and the name of the song is "I'll Help You Cry."

It was so beautiful and I felt that the words were written for me.

I cannot find the song so that I can write the words for you but the song said,

I can't do much to change things but........I'll help you cry.

This is exactly what all of you are doing by reading my words and commenting on my journal entries concerning Peggy.

You are all helping my cry and for that...

Thank You!

I am crying because my life with Peggy is coming to an end and I am smiling because.....

It Happened.

My tears are bathing my soul of grief as I continue to....

Watch My Sister...Disappear.

I Love You Today, Peggy!

Mary Louise

THE OUTSIDE AND THE INSIDE

Have you ever seen the delightful characters at Disney World

or noticed the mascots at ball games?

 As I watch them, it is easy to forget that what is on the outside is not what is on the inside.

They become real and I accept them by their outward appearance. It is easy to forget that there are people inside of the costume.

It is the people inside that make the character come to life. When the outer costume is taken off, it will lie lifeless on the floor. It is unable to walk and react on it's own. It can only come to life if there is someone on the inside of the costume that can enable the character to come to life.

This is what Alzheimer's disease does to a person. What you see on the outside is not what is on the inside.

Peggy looks much the same on the outside but there is little left of the Peggy that I knew on the inside.

The inside of Peggy has been taken over by Alzheimer's disease.  Alzheimer's disease does her walking, her thinking and her reasoning and is in control of all of her actions.

 She still looks like the Peggy that I knew but she is being matulipated from the inside.

Alzheimer's has taken over the inside of my sister. Alzheimer's has taken over her mind and is in total control of what she thinks, what she does and how she acts every day.

Alzheimer's is the only way that Peggy can come to life now. It is inside of her and has pushed the Peggy that I knew out.

When I look into Peggy's eyes, I no longer see her looking back at me.

I see the eyes of Alzheimer's.

I see the coldness of a monster that has taken over the person that was once my sister.

I miss the warmth that I used to see in Peggy's eyes. I miss her humor and her quick wit.

Peggy is no longer inside of her body. Alzheimer's disease moved in and Peggy is gone forever.

The next time that you see a character dressed as a cartoon or a mascot at a ball game, remember Alzheimer's and remember Peggy.

A person is on the inside of the costume making it dance, skip and flip or whatever it is doing.

 It is not really....real. It is not what it seems.

What is on the outside is not necessarily what is on the inside.

I Love You Today, Peggy!

I miss the person that you were on the inside.

Mary Louise

WHAT'S IN A NAME?

MARY     Gender: Feminine
Usage: English, Biblical
Pronounced: MER-ee

LOUISE Gender: Feminine
Usage: French, English
Pronounced: loo-EEZ

Names serve several purposes. Most importantly they help distinguish us from one another. Imagine how difficult it would be to refer to people if we did not use names. Instead of saying Bob one would have to say something like the short red-headed man who lives down the street. Some names carry information about our roots, such as family or clan name. Given names, what westerners call first names, are generally bestowed at some point after the birth of the child.

I think that there is nothing sweeter than the sound of a person calling you by your given name.

If you are called by name, it means that the person speaking to you remembers who you are.

Peggy has not said my name in such a long time. Even when I would say, Peggy, this is Mary Louise. Do you know who you are talking with?

She would answer, No.

Alzheimer's disease plays  mind games with the person who has the disease and with the people who love them.

Yesterday, out of the blue, Peggy said my name.

I asked her if she knew who she was talking with and she said; yes, Mary Louise.

I was pleased because the sound of Peggy saying my name was a gift. A gift that may or may not come again.

For some unexplained reason, Alzheimer's loosened it's hold on Peggy's mind yesterday and she was talking in 3 and 4 word sentences. She was able to carry on a  limited conversation.

Yesterday, I was able to talk with my sister and she was able to call me by my name.

I heard "home"  one more time because Peggy said my name.

What is in a name????

All the memories of a life time.

All of the memories of Peggy calling me by name echoed through my mind.

Our names not only tell the world who we are but our names hold special memories.

Yesterday, Peggy said she remembered who I was because she said; Mary Louise.

I smiled when she said it because at the same time, I remembered hearing the little girl Peggy say my name.

I remembered her little voice from our past saying....

 Woo ese...Woo ese   Where are you?

I am right here, Peggy.

I will always be here for you because that's what sisters do.

Amy Li said that having a sister is like having a best friend that you can't get rid of. You know that whatever you do, wherever you go, they'll still be there.

Woo ese and Peggy

I Love You Today, Peggy!

Mary Louise

 

 

 

FINDING THE GOOD....IN GOODBYE

I talked with Peggy this morning and when I started to say goodbye to her, I just couldn't get the word out.

Instead of saying goodbye, I hesitated and blurted out, Peggy, I love you!

She replied, I love you too.

That would have been a good thing if I thought that she knew who she was saying I love you..... too.

There have been many goodbyes in my life but this is the hardest, longest goodbye that I have ever made.

I think that from now on, I will just say "Bye" to her because I can find no good.............

In this goodbye to my sister.

I Love You Today, Peggy!

Mary Louise

OAK TREE OR WILLOW TREE?

I have not been able to write this past week.

All of my words and thoughts concerning Peggy were frozen in my mind. Frozen as solid as a rock refusing to melt and run to my fingers.

It was as if my head and heart needed a break from thinking and writing.

Someone asked me one time if I could be a tree, which tree would I choose.

I chose a oak tree because of the strength,  endurance and size of the massive branches.

I have been a oak tree this past week. I was refusing to bend, to admit my weakness and to admit that Peggy is indeed, a lot worse.

After much soul searching and mind searching, I have decided that I need to be a willow tree where Peggy is concerned.

I tried and wanted to be a Oak tree but the wind of change in her was pulling at the great roots of my tree. Roots that did not go deep enough into the soil of my being to keep me upright and strong.

Now, I will learn what it is like to be a Willow tree. I will let my branches dance in the wind  when I receive news of her condition.

I must bend with the news, I must sway with the breezes of the changes in my sister.

My sister's, Betty Jean and Barbara will be visiting with Peggy on March 19th. I will stay close by phone and I send my love to each of them as they spend the day with our sister.

A sister that we all  remember and love

even as we ........

Watch Peggy disappear from our lives.

I Love You Today, Peggy!

Mary Louise

AND THE OSCAR GOES TO....

I missed Peggy on Sunday night.

There were two national broadcasts that we watched together across the miles. One telecast was "Miss America" and the other was "The Oscars".

Our Oscar night ritual would play out like this... we would dress in  silk pajamas, pour a glass of wine or soda into our prettiest glasses.  The telephone was always by our side for those important consultations during the show.

We would call one another during the telecast and talk about the beautiful people on the red carpet, the gowns the ladies chose and our choice for the top awards.

We were both happy when the Oscar powers that be switched from saying..And the winner is...to... and the Oscar goes to!

I know that our way of watching the Oscar's or Miss America might sound silly to many people. Peggy and I realized that our ritual really didn't matter in the great scheme of things. But it was a fun way to share laughter and thoughts across the miles on a special evening.

This past Sunday night, I put on my best silk pajamas, poured a glass of wine and watched the Oscars.

I remembered all the years of sharing special Sunday night Oscar telecasts with Peggy and I smiled.

I'm glad that we shared some silly fun together.  I missed knowing the Peggy was as close as a phone call as I watched the show on Sunday night. I missed the sharing of our opinions on the movies and winners who received the coveted gold statue.

At the end of the show on Sunday night, when all the Oscars were given out and all the beautiful people were leaving the grand theater....I decided to make a acceptance speech of my own.

I raised my glass and thanked Peggy...

I stood before a packed living room. A packed living room full of memories of past Oscar telecasts, midnight calls and laughter.

I stood there in my silk pajamas, with my imagined Oscar and said through my tears....

There are so many people that I want to thank tonight for this honor.

I would like to thank my parents for bringing Peggy into my life.

I would like to thank my other Sisters and my Brother for their continued support.

I would like to thank Peggy's husband and daughter's for their dedication to her and their love for her.

I would like to thank each of my children for their love as I continue to write this movie about Peggy.

and last but not least..

I would like to thank my husband for walking this journey with me.  I would like to thank him for his love and care as I struggle with my part in a movie that continues to unfold in my life.

And finally.....

I would to thank Peggy, my sister, my forever friend for all the memories of growing up together. I would also like to thank her for the support and care that I have felt through our lives.

I also want to thank her for the part that she has played in the movie of my life.

And finally....

I would like to thank her for sharing silly Oscar nights in silk pajamas in front of the television and on the phone.

If an Oscar could be given for a sister and friend...Peggy would have been given a award tonight.

The movie of Peggy's life is slowly coming to an end. The film has broken and slaps the reel with a repeated click as the image of Peggy fades from the silver screen. Her image is being replaced by a flickering light and I only see flashes of the Peggy that I used to know as she continues to fade from the giant screen called life.....

Thank you, Peggy for giving me a small part in your movie. 

A movie called...............

Watching My Sister.....Disappear.

One of the wonderful things about having a part in Peggy's life movie is that...

I can always watch it in my memory reruns...wearing silk pajamas.

I Love You Today, Peggy!

Mary Louise